Report on Lung Cancer in Australia

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REPORT ON LUNG CANCER IN AUSTRALIA
LITERATURE REVIEW AND CONSULTATION ON
FACTORS IMPACTING ON LUNG CANCER OUTCOMES
THIS PROJECT IS AN INITIATIVE OF
CANCER AUSTRALIA'S NATIONAL LUNG CANCER PROGRAM
FUNDED BY THE AUSTRALIAN GOVERNMENT.
THE REPORT WAS PREPARED BY CURTIN UNIVERSITY.
Report on Lung Cancer in Australia. Literature review and consultation
on factors impacting on lung cancer outcomes
ISBN: 978-1-74241-375-4
Online ISBN: 978-1-74241-376-1
Publications Number: D0161
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© Commonwealth of Australia 2011
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Literature review and national consultation on factors impacting on lung cancer outcomes
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Project Team
Curtin University Project Team
Professor Moyez Jiwa
Professor Patricia Davidson
Ms Sarah McGrath
Dr Phillip Newton
Dr Michelle DiGiacomo
Dr Wendy Chan She Ping Delfos
Ms Louise Hadfield
Professor Alexandra McManus
Professor Sandra Thompson
Collaborators
Professor Michael Dooley
Dr Georgia Halkett
Professor Ian Hammond
Professor Mark Harris
Dr Shane Pascoe
Dr Martin Phillips
Mr John Stubbs
Professor Robin Watts
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Contents
Project Team ...................................................................................................... ii
Abbreviations .................................................................................................. viii
Glossary ............................................................................................................ ix
Executive Summary .......................................................................................... xii
Patient factors .............................................................................................. xii
Provider factors ........................................................................................... xiii
System factors ............................................................................................ xiii
1. Context ........................................................................................................... 1
2. Objectives ....................................................................................................... 2
3. Implications ................................................................................................... 3
3.1 Patient .................................................................................................... 3
3.2 Provider .................................................................................................. 4
3.3 Systems issues ........................................................................................ 4
3.4 Priority areas to decrease variations in lung cancer management in Australia .. 5
3.5 Initiatives in the short, medium and longer term .......................................... 5
4. Approach ........................................................................................................ 7
4.1 Literature review ...................................................................................... 7
4.2 Consultation phase ................................................................................... 7
4.2.1 Expert Consultations ...................................................................... 8
4.2.2 Consultation Round 1 ..................................................................... 8
4.2.3 Consultation Round 2 ..................................................................... 8
5. Results ........................................................................................................... 9
5.1 Burden of disease..................................................................................... 9
5.2 Guidelines ............................................................................................. 10
5.3 Practice ................................................................................................. 10
5.4 Research ............................................................................................... 11
5.5 Findings of Consultation Round 1 and Consultation Round 2 ........................ 12
5.5.1 Waiting times and access to treatments ......................................... 12
5.5.2 Access to care ............................................................................. 13
5.6 Priority areas for Guidance Material .......................................................... 17
5.6.1 Clinical guidance material ............................................................. 17
5.7 National studies ..................................................................................... 17
5.7.1 Patient factors ............................................................................. 17
5.7.2 Provider factors ........................................................................... 17
5.7.3 Systems issues ............................................................................ 17
5.8 International studies ............................................................................... 18
5.8.1 Patient factors ............................................................................. 18
5.8.2 Provider factors ........................................................................... 18
5.8.3 System issues ............................................................................. 18
5.9 Data quality ........................................................................................... 18
5.10 Diagnostic and treatment data ............................................................... 19
5.11 Aboriginal Australians/other Australians and urban/rural comparisons ......... 19
5.11.1 Priority areas for guidance material .............................................. 21
5.11.2 Patient, provider and systems issues ............................................ 21
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5.12 Summary of review of evidence and consultation methods .........................
5.13 Recommendations for guidance material and further research ....................
5.13.1 Clinical guidance material ............................................................
5.13.2 Research ...................................................................................
5.14 Conclusions .........................................................................................
21
21
22
22
22
References........................................................................................................ 24
Appendix 1: Literature Review Search Strategies ............................................. 31
Databases searched ..................................................................................... 31
Inclusion/Exclusion ...................................................................................... 31
Appendix 2: Existing Clinical Guidelines ........................................................... 32
Appendix 3: Australian Data ............................................................................. 36
Incidence .................................................................................................... 36
Mortality ..................................................................................................... 38
Survival ...................................................................................................... 39
Stage at diagnosis ....................................................................................... 39
Lung cancer in the States and Territories ........................................................ 40
Appendix 4: Survey 1 and Survey 2 .................................................................. 41
Lung Cancer in Australia: your chance to influence policy and a research agenda 41
1. Thank you for participating in Cancer Australia's Lung Cancer Survey ..... 41
2. Some information about you ............................................................. 42
3. Awareness and emphasis on lung cancer in Australia ............................ 44
4. Investigation for lung cancer ............................................................. 44
5. Referral for investigation, diagnosis and management of lung cancer...... 46
6. Treatment and management of lung cancer ......................................... 47
7. Outcomes of lung cancer in Australia .................................................. 48
8. Thank you ....................................................................................... 50
Cancer Australia .......................................................................................... 51
1. Thank you for participating in Cancer Australia's Lung Cancer Second
Survey ............................................................................................... 51
2. Some information about you ............................................................. 52
3. Improving diagnosis of lung cancer .................................................... 54
4. Improving diagnosis of lung cancer .................................................... 55
5. Improving diagnosis of lung cancer .................................................... 56
6. Improving diagnosis of lung cancer .................................................... 56
7. Improving diagnosis of lung cancer .................................................... 56
8. Health professionals at the time of diagnosis ....................................... 58
9. Health professionals at the time of diagnosis ....................................... 58
10. Health professionals at the time of diagnosis ..................................... 59
11. Improving the monitoring of individuals at high risk ............................ 59
12. Improving the treatment of lung cancer ............................................ 59
13. Improving the treatment of lung cancer ............................................ 63
14. Improving the treatment of lung cancer ............................................ 63
15. Priority areas for improving lung cancer management in Australia ........ 64
16 Thank you ...................................................................................... 65
Appendix 5: Consultation Round 1 Results ....................................................... 66
Section 1: Some information about you .......................................................... 66
Section 2: Awareness and emphasis on lung cancer in Australia ........................ 68
Question 2.1: Please rate your opinion on the following statements. .......... 68
Section 3: Investigation for lung cancer .......................................................... 70
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Question 3.1: ...................................................................................... 70
Question 3.2: What is the average waiting time to access these Services /
Personnel in your practice setting? ......................................................... 73
Section 4: Referral for investigation, diagnosis and management ....................... 78
Question 4.1: Identify your level of agreement with the following 7
statements.......................................................................................... 78
Section 5: Treatment and management of lung cancer ..................................... 80
Question 5.1: What factors influence Lung Cancer treatment and management
in Australia? ........................................................................................ 80
Section 6: Outcomes of lung cancer in Australia .............................................. 81
Question 6.1: Which factors impact on the outcomes of Lung Cancer
management in Australia?..................................................................... 81
Question 6.2: Please list three factors that would improve lung cancer
management in Australia ...................................................................... 83
Appendix 6: Consultation Round 2 Results ....................................................... 94
Survey 2: Results Summary .......................................................................... 94
Section 1: Some information about you .................................................. 94
Section 2: Improving diagnosis of lung cancer ......................................... 96
Section 3: Investigation for lung cancer ................................................. 102
Section 4: Improving diagnosis of lung cancer ........................................ 103
Section 5: Improving diagnosis of lung cancer ........................................ 105
Section 6: Improving diagnosis of lung cancer ........................................ 106
Section 7: Health professionals at the time of diagnosis ........................... 108
Section 8: Health professionals at the time of diagnosis ........................... 111
Section 9: Health professionals at the time of diagnosis ........................... 113
Section 10: Improving monitoring of individuals at high risk..................... 115
Section 12: Improving treatment of lung cancer ..................................... 123
Section 13: Improving the treatment of lung cancer ................................ 125
Appendix 7: Thematic Analysis from Expert Participants ................................ 130
Appendix 8: References .................................................................................. 132
List of Figures
Figure 1: Factors impacting on diagnosis ................................................................ 15
Figure 2: Participants that should be included in the multidisciplinary team ................ 16
Figure 3: Information to be included in guidance material ......................................... 16
Figure A1: Trends in incidence rates for lung, bronchus and trachea (ICD10 C33-C34),
Australia, 1982-2006 ........................................................................................... 37
Figure A2: Average annual lung cancer incidence by State and Territory, 2001-2005 ... 37
Figure A5: Trends in death rates for lung, bronchus and trachea (ICD10 C33-C34),
Australia, 1968-2007 ........................................................................................... 38
Figure 2.1: Views on improving care 2.1 Open-ended Comments: ............................ 69
Figure 3.1: Availability of diagnostic investigation and testing 3.1 Open-ended
Comments: ......................................................................................................... 72
Figure 4.1: Diagnosis, management and treatment 4.1 Open-ended Comments: ........ 79
Figure 6.1: Factors potentially impacting outcomes .................................................. 82
Figure 3.1: Perceived variations in diagnostics / staging practices in clinical area ........ 102
Figure 6.1: Perceived probability of initiatives to improve timely diagnosis, treatment and
outcomes of lung cancer ...................................................................................... 106
Figure 6.2: Where information would be best targeted ............................................ 108
Figure 7.1: Do you access an MDT at diagnosis ...................................................... 109
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Figure 7.2: Type of health professional should be part of the MDT at time of diagnosis 110
Figure 8.1: Variations in access to MDTs ................................................................ 112
Figure 9.1: Reasons for variation in MDT access ..................................................... 114
Figure 10.1: Are clear protocols for monitoring high risk individuals available in your
setting? ............................................................................................................. 115
Figure 10.2 Benefits of developing guidance materials for monitoring high risk patients
........................................................................................................................ 116
Figure 11.1: Factors influencing the effective treatment of lung cancer...................... 117
Figure 11.2: Practice / setting experience of access to MDT for treatment.................. 118
Figure 11.3: Perceived importance for information to be included in clinical guidance
material ............................................................................................................ 120
Figure 11.4: Health professionals best targeted for treatment related guidance material
........................................................................................................................ 121
Figure 11.5: Patient outcomes improved by guidance material on MDT benefit in lung
cancer treatment ................................................................................................ 122
Figure 12.1: Do MDT access difficulties impact on lung cancer outcomes? .................. 123
Figure 12.2: MDT included health professionals to plan and monitor treatment ........... 124
Figure 13.1: Reasons for variation in MDT access for treatment ................................ 126
Figure 14.1: Perceived area of clinical guidelines greatest impact ............................. 127
List of Tables
Table 1: Strategies to decrease variation in lung cancer outcomes ............................... 5
Table 2: Views on referral for investigation, diagnosis and management of lung cancer 12
Table 3: Participants' views on clinical environment ................................................. 13
Table 4: Relative survival by region, lung cancer diagnoses in 1997-2004 .................. 21
Table A1: Guidance Materials ................................................................................ 32
Table A3: Average annual incidence of lung cancer, 2001-2005 (Lung, bronchus &
trachea (ICD-10 C33-C34)) .................................................................................. 37
Table A4: Age standardised lung cancer incidence rates (Lung, bronchus & trachea (ICD10 C33-C34)). ..................................................................................................... 38
Table A6: Aged standardised mortality rate (Lung, bronchus & trachea (ICD-10 C33C34)) ................................................................................................................. 39
Table A7: Trends in 5 year survival, diagnoses 1982-1986 to 1998-2004, (Lung,
bronchus & trachea (ICD-10 C33-C34)) .................................................................. 39
Question 1.1: Please mark the professional description for your role .......................... 66
Question 1.2: In which state or territory do you work principally? .............................. 67
Question 1.3: In what sector do you work primarily?................................................ 67
Question 1.4: Do you provide services in an outreach clinic from a metropolitan service?
......................................................................................................................... 68
2.1 Statistical results ........................................................................................... 68
3.1 Statistical results ........................................................................................... 71
Bronchoscopy and lung biopsy .............................................................................. 73
Computerised axial (CT) ....................................................................................... 74
Ultrasound guided lung biopsy .............................................................................. 74
Biomarker testing (eg. EGFR) ................................................................................ 74
Cytology analysis................................................................................................. 75
Positron Emission Tomography (PET) ..................................................................... 75
Chest X-ray ........................................................................................................ 75
Multi disciplinary care team ................................................................................... 75
Thoracic surgeon ................................................................................................. 76
Respiratory physician ........................................................................................... 76
Medical oncologist................................................................................................ 76
Radiotherapist ..................................................................................................... 77
Table 4.1: Statistical results .................................................................................. 78
Table 5.1: Statistical results .................................................................................. 80
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Table 6.1: Statistical results .................................................................................. 81
Table 1.1: Participant Demographics: Professional Description .................................. 94
Table 1.2: Participant Demographics: State ............................................................ 95
Table 1.3: Population Demographics: Region .......................................................... 95
Table 1.4: Population Demographics: Sector ........................................................... 96
Table 2.1: Perceived VARIATIONS in diagnostic / staging practices in clinical area ....... 96
Table 2.2: Do you observe DELAYS in diagnosis/staging of Lung Cancer? ................... 98
Table 2.3: Evidence based use diagnostic/staging interventions contribution to
VARIATION ........................................................................................................ 100
Table 3.1: Statistical results ................................................................................. 102
Table 4.1: Is there variation in APPROPRIATE and TIMELY REFERRAL? ...................... 103
Table 5.1: Do referral variations contribute to outcome variations ............................ 105
Table 6.1: Statistical results ................................................................................. 106
Table 6.2: Statistical results ................................................................................. 107
Table 7.1: Statistical results ................................................................................. 108
Table 7.2: Statistical results ................................................................................. 109
Table 8.1: Statistical results ................................................................................. 111
Table 9.1: Statistical results ................................................................................. 113
Table 10.1: Statistical results ............................................................................... 115
Table 11.1: Statistical results ............................................................................... 116
Table 11.2: Statistical results ............................................................................... 118
Table 11.3: Statistical results ............................................................................... 119
Table 11.4: Statistical results ............................................................................... 120
Table 11.5: Statistical results ............................................................................... 121
Table 12.1: Statistical results ............................................................................... 123
Table 12.2: Statistical results ............................................................................... 123
Table 13.1: Statistical results ............................................................................... 125
Table 14.1: ........................................................................................................ 127
14.2. Priorities: .................................................................................................. 128
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Abbreviations
Abbreviation
Description
ABS
Australian Bureau of Statistics
ACT
Australian Capital Territory
AIHW
Australian Institute of Health and Welfare
CHD
Coronary heart disease
CHF
Chronic heart failure
COPD
Chronic obstructive pulmonary disease
EBUS
Endobronchial ultrasound
EPs
Expert participants
GP
General Practitioner
MDT
Multidisciplinary Team
NHMRC
National Health and Medical Research Council
NSW
New South Wales
NT
Northern Territory
Qld
Queensland
SES
Socioeconomic status
SA
South Australia
SPs
Survey Participants
Tas
Tasmania
UK
United Kingdom
USA
United States of America
Vic
Victoria
WA
Western Australia
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Glossary
Term
Definition
Advanced lung cancer
Cancer that has metastasised or is unlikely to be curable
Biopsy
A procedure to remove cells or tissues from the body for
testing and examination under a microscope
Bronchoscopy
An examination of the inside of the windpipe, the bronchi,
and/or the lungs using a lighted tube. The tube is inserted
through the patient's nose or mouth. Bronchoscopy may be
used to find cancer or as part of some treatments to deliver
therapeutic agents
Chronic obstructive pulmonary A lung disease characterised by chronic obstruction of lung
disease (COPD)
airflow that interferes with normal breathing and is not fully
reversible
Clinical trial
A research study in which patients volunteer to test new ways
of screening, preventing, diagnosing, or treating a disease
Clinical network
Process for planning, coordination, delivery and evaluation of
care in a defined clinical setting or geographical location
Co-morbidity
Two or more health problems at the same time
Consultations Round 1
The first survey distributed via a secure online platform to
identify experts' opinions on the causes of variations in lung
cancer care in Australia.
Consultation Round 2
The second survey distributed via a secure online platform to
identify guideline content and strategies to decrease variations
in lung cancer care
Computerised tomography
(CT) scan
A technique for constructing pictures from cross-sections of
the body, by x-raying the body from many different angles
Cultural competency
Cultural competence in health care describes the ability of
systems to provide care to patients with diverse values,
beliefs and behaviours, including tailoring delivery to meet
patients' social, cultural, and linguistic needs
Disability-adjusted life years
(DALY)
A measure used in burden of disease and injury estimates,
which combines the years of life lost due to premature death
(YLL) and the equivalent 'healthy' years of life lost due to
disability or illness (YLD). One DALY represents one lost year
of 'healthy' life.
Endobronchial ultrasound
(EBUS)
An invasive procedure in which physicians use ultrasound
devices inside the airways and the lung for exploration of the
structures of airway walls, the surrounding mediastinum, and
the lungs
Expert Consultations
Interviews that were conducted with experts in cancer care
and consumers
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Term
Definition
Expert Participants (EPs)
Those that participated in the Expert Consultations
Gender
Refers to the socially constructed roles, behaviour, activities
and attributes that a particular society considers appropriate
for men and women. The distinct roles and behaviour may
give rise to gender inequalities
Health Literacy
The knowledge and skills required to understand and use
information relating to health issues.
Local Government Area
A term used in Australia (particularly by the Australian Bureau
of Statistics) to refer to areas controlled by each individual
Local Government
Mesothelioma
Pleural mesothelioma is a cancer of the membranes of the
lung. The commonest cause of mesothelioma is exposure to
asbestos. This project does not cover mesothelioma
Magnetic Resonance Imaging
(MRI)
A type of body scan that uses a magnet linked to a computer
to make detailed pictures of areas inside the body. An MRI can
be used to find cancer
Non-small cell lung cancer
One of the two main groups of lung cancers. This group
includes squamous cell carcinoma, adenocarcinoma, large cell
carcinoma and bronchiolo-alveolar cell carcinoma
Oncologist
A doctor who specialises in studying and treating cancer
Positron Emission Tomography In a PET scan, the patient is given radioactive glucose (sugar)
(PET) scan
through a vein. A scanner then tracks the glucose in the body.
The scanner's pictures can be used to find cancer, since
cancer cells tend to use more sugar than other cells
Primary cancer
The first or original cancer
Prognosis
The expected course of a disease and the chances of recovery
Qualitative Thematic Analysis
Thematic analysis is a method for identifying, analysing and
reporting patterns within qualitative material. This process
allows clear identification of prominent themes, and provides
an organised and structured way of dealing with the narrative
data.
Radiation
The emission of energy in waves or particles. Often used to
treat cancer cells
Radiation oncologist
A doctor with specialist training in treating cancer patients
using radiation
Risk Assessment
Determination of quantitative or qualitative risk related to a
situation or a recognised threat
Screening
Checking for disease or precursors of a disease when there
are no symptoms. Since screening may find diseases at an
early stage, there may be a better chance of curing the
disease
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Term
Definition
Small cell lung cancer
A type of lung cancer made up of small, round cells. Small cell
lung cancer is less common than non-small cell lung cancer
and often grows more quickly. The name is often shortened to
SCLC. It is strongly associated with cigarette smoking
Socioeconomic status (SES)
The social standing of an individual or group in terms of their
income, education, and occupation. An individual's income,
education, and occupational status are often closely
interrelated
Stage
A descriptor (usually numbers 1-4) of the size of the cancer
and how much it has spread
Survey Participants (SPs)
Those that participated in Consultation Round 1 and
Consultation Round 2
Thoracic surgeon
A doctor who specialises in chest and lung surgery
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Executive Summary
The Australian Institute of Health and Welfare (AIHW) has reported that lung cancer
incidence will increase by an average of 190 cases per year from 2006-2010, reaching a
projected total of 10,004 cases by 2010. Lung cancer accounts for over 9% of all cancer
cases and 19% of cancer deaths in Australia. In 2006 there were 9563 cases and 7397
deaths due to lung cancer in Australia and only 12% of patients survived 5 years. It is
the second leading cause of all deaths in men and the fifth highest cause of all deaths
amongst women in Australia. In addition, there has been an increase in incidence and
mortality rates among women. There is evidence of a poorer prognosis for those from
rural and remote communities, lower socioeconomic areas and Aboriginal and Torres
Strait Islander communities.
This project deployed a multi-methods approach including: 1) a review of published and
unpublished literature including government reports; 2) interviews with expert clinicians
and consumers (n = 34); and 3) an online survey of health professionals and consumers.
The first wave of the online survey (Consultation Round 1) received 137 responses with a
completion rate of 74.7%. Consultation Round2 received 150 responses with a
completion rate of 73.3%. The sampling method achieved representation from every
state and territory and across both public and private health sectors. This review has
identified variations in management prior to the definitive treatment, although nationwide data to confirm these observations are not available and this conclusion is based
primarily on expert opinion and selected studies. Experts conclude that once a correct
diagnosis is made and lung specialists are engaged, there is relative consistency in
management. However, the patient trajectory prior to entry into the health care system
is highly variable. Many of the factors resulting in poor outcomes are a function of patient
circumstances and/or understanding and range from late presentation due to a failure to
appreciate the urgent nature of symptoms and/or a reluctance to travel long distances to
specialist centres. This report incorporates themes from the literature and interviews with
experts and a small number of consumers as well as providing a snapshot of the opinions
of a broad range of health professionals. The report will inform future Lung Cancer
Program initiatives. The sample size overall and the higher proportion of responses from
specialist providers and a relatively small number from primary care professionals should
be taken into account when interpreting the results.
Patient factors
A range of factors contribute to outcome variations. As in most diseases socioeconomic
factors exert a strong influence. This is more pronounced in lung cancer where smoking
rates are higher in lower socioeconomic groups and among Aboriginal and Torres Strait
Islanders. Smoking is an increasingly stigmatised habit and the strong association with
lung cancer contributes to patient delays in accessing health care services. Lung cancer is
more common in older people, many of whom have other chronic conditions. Cough and
dyspnoea, symptoms commonly associated with smoking related conditions, such as
chronic obstructive pulmonary disease (COPD), coronary heart disease (CHD) and chronic
heart failure (CHF) are more likely to be attributed to these conditions than to lung
cancer.
Expert consultation identified that the time of diagnosis is one of uncertainty for patients
and there is less support available to those with lung cancer compared with other cancer
groups. This may result in poorer outcomes. All phases of the project identified strong
support for the role of the MDT. The need for the input of an expert MDT often requires
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patients and their families to travel long distances to specialist centres in order to access
experts who work within a MDT. The literature and expert consultation also indicate that
some individuals may be reluctant to undergo treatment because of fear of adverse
effects of chemotherapy and radiotherapy. In addition, financial concerns may be a
barrier to individuals seeking appropriate treatment.
Provider factors
As in most professional groups, specialisation is increasing and there is a need to address
this factor in professional development and workforce planning. More favourable
outcomes are achieved by specialists with a particular interest in lung cancer and
therefore, exploring models to improve access is important. Consultations indicated that
increasing specialisation in diagnostic testing and tumour profiling mean that
professionals need to maintain currency in these skills. Furthermore, experts suggested
that a greater emphasis on lung research from basic to translational research would
create incentives and impetus for health professionals to specialise in lung cancer
management.
Experts stated that some health professionals may not be aware of the benefits of lung
cancer treatment and as a consequence, may be reluctant to refer patients for specialist
treatment. Data demonstrated the need to access specialist advice to support clinical
decision making. Cancer experts emphasised the value of the MDT in improving health
outcomes. However, it was generally considered that there is variability in the
composition and role of these MDTs and that a lack of incentives in the private sector
limited participation. Systems and personnel that promote coordination, particularly lung
cancer nurses and care coordinators, were generally seen as favourable and useful in
ensuring timely treatment.
Experts who were consulted supported initiatives to increase the awareness of risk
factors for lung cancer in primary care, enhance timely and appropriate diagnosis across
all specialities, and update clinical guidelines, with implementation strategies and
mechanisms for monitoring outcomes.
The literature identified a need for health professionals to be aware of their own values
and beliefs and the impact these may have on their clinical decisions.
System factors
Throughout the consultations, coordination of care through an MDT was underscored as
being important to decreasing variation in lung cancer outcomes. Health professionals
working in public and private care settings and lung cancer care provided across settings
were noted to be challenges to participation in MDTs. Providing care across health care
systems and providers is a challenge noted across many conditions in Australia and is
one of the foci of the National Health and Hospital Reform agenda. Importantly, this
study identified that, outside research settings, there are no integrated and standardised
mechanisms of data management to monitor process and outcome measures in lung
cancer.
Experts recommended negotiation between professional groups and policy makers to
develop benchmarks and to monitor procedural volumes and outcomes. Updated clinical
guidelines, including incentives for participation were also recommended.
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1. Context
Lung cancer in Australia is the leading cause of death due to cancer and is the second
leading cause of all deaths in men and the fifth highest cause of all deaths amongst
women. In 2006 there were 9563 cases and 7397 deaths due to lung cancer in Australia
and only 12% of patients survived 5 years.[1, 2] Although incidence and mortality rates
of lung cancer are declining in men, there has been an increase in rates in women.[3, 4]
Except for short-term survival after a diagnosis of small cell lung cancer, the prognosis
for patients with lung cancer has not greatly improved.[5] Higher rates of lung cancer in
Aboriginal and Torres Strait Islanders and those from socioeconomically deprived groups
mean that prevention and therapeutic strategies need to be targeted and tailored to
those with the highest need.[6] As the population ages it is likely that the incidence of
lung cancer will rise among older people.[7] Lung cancer in the elderly, as at all ages,
may occur in those who have never smoked, currently smoke or were previous smokers
and in those exposed to second hand smoke.[8, 9]
In response to the increasing disease burden, there have been improvements and
innovations in diagnosis, management and models of care delivery for lung cancer.[1012] The increase in complexity has implications for professional training and for the way
in which health care services are organised, funded and delivered in primary, secondary
and tertiary care. A major obstacle in achieving improvements in outcomes for lung
cancer is that patients often present late when disease is advanced.[13] The absence of
an effective screening tool is one of the factors challenging earlier diagnosis.[14]
Although low-dose spiral computed tomography (CT) has proven to be effective in the
early detection of lung cancer, the role of regular CT screening to reduce lung cancer
mortality in heavy smokers has yet to be demonstrated and concerns remain about
radiation exposure through repeated scanning.[15] Numerous ongoing large-scale
randomised trials are under way in high-risk individuals to determine whether CT and
other novel approaches to screening improve survival.[14,16] The cost effectiveness of
screening tests, should they be demonstrated to improve survival, will also need to be
considered.[17] Therefore, in the short term, it is likely that the greatest improvements
in health outcomes for lung cancer will be leveraged through obtaining an earlier
diagnosis.
This report incorporates themes from the literature, interviews with clinical leaders and
experts and a small number of consumers, and the results of two surveys sent to a
broader range of health professionals. The sample size overall and the higher proportion
of responses from specialist providers and a relatively small number from primary care
professionals should be taken into account when interpreting the results.
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2. Objectives
The objectives of the Lung Cancer in Australia: Literature review and consultation on
factors impacting on lung cancer outcomes, hereafter referred to as 'study' are:
1.
To identify gaps in the optimal management of lung cancer by conducting a
review of the evidence and through consultation and research into the
investigation, referral, treatment and care of people with symptoms and signs
that may indicate lung cancer or who have lung cancer;
2.
Identify reasons for variations in outcomes;
3.
Through a process of expert consultation, identify priority areas for guidance
material to improve health outcomes.
Based upon a review of published and grey literature, consultation with experts and
research undertaken for this project, it is apparent there are variations in lung cancer
management and outcomes in Australia. Experts who participated in this project suggest
that once a correct diagnosis is made, and lung specialists engaged, there is less
variability in care. However, the patient trajectory prior to the diagnosis and treatment of
lung cancer is highly variable and many of the factors impacting upon health care
outcomes are a function of patient circumstances and/or understanding and range from
late presentation to reluctance to travel long distances to specialist centres. Further, it
has been identified that inefficiencies in the health care system, such as waiting for tests,
can result in delays.
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3. Implications
The factors associated with the diagnosis and referral processes for lung cancer, priority
areas for clinical guidelines and the implications of the study findings are summarised
below. Data supporting these conclusions are reported further in this report and in the
appendices.
3.1 Patient
Consumer issues in lung cancer care are complex and are linked to physical, social,
psychological and sociodemographic characteristics.[18, 19] An important factor to
consider in lung cancer is that patients are frequently elderly with multiple co-morbid
conditions.[20, 21] The high symptom burden associated with COPD, CHF and functional
decline and physiological changes in ageing may mean that patients fail to recognise the
significance of symptoms. It has been identified that health care systems are not always
well configured to meet the needs of individuals with chronic and complex diseases.[22]
The literature emphasises that lung cancer is a highly stigmatised condition, primarily
because of the association with smoking.[23] Available information suggests that
embarrassment and shame experienced by individuals who fail to stop smoking are
important reasons why individuals do not seek medical care for symptoms such as cough
or shortness of breath. Issues relating to stigma are of significance in analysing
variations in lung cancer management particularly in Aboriginal people.[24] The shock
and disbelief associated with a diagnosis of lung cancer mirror reactions to bad news
delivered in other life threatening illnesses.[25] Therefore ensuring consumers have
access to appropriate and timely information and support is important. Interventions that
empower patients to seek help earlier for symptoms may promote more timely diagnosis
in individuals with lung cancer. Assistance in navigating the system has been identified in
the literature and from consultation with experts as an important concern.[26, 27] The
increasing importance of factors such as lower socioeconomic status and impaired health
literacy on influencing decisions to undergo treatment are important considerations in
developing and evaluating health care services.[28]
Recommendations to address consumer concerns:

Target high risk groups to increase the awareness of lung cancer, such as
Aboriginal communities and culturally and linguistically diverse groups where
rates of smoking are higher.

Provide consumers with information outlining a realistic picture of lung cancer
care and the importance of accessing specialist care and MDTs (for example it
may be necessary to travel to receive specialist care).

Where possible, provide access to care coordinators or lung cancer nurses to
assist the patient in navigating the health care system.

Develop and test models of intervention that empower consumers at high risk to
monitor their health status for changes in symptoms and provide an action plan
for when changes are noted.

Inform professionals of the need to be aware of the stigma associated with lung
cancer and smoking when discussing these with patients
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
Provide information that is culturally appropriate and considers issues such as
health literacy.
3.2 Provider
A range of providers is necessary to improve lung cancer diagnosis and management.
Within the specialist domain, expertise in respiratory medicine, oncology, radiology,
radiotherapy, nursing and allied health are crucial. The general practitioner plays a
crucial role as the gatekeeper to specialist services and early diagnosis.[29] The
Australian government is currently undertaking reform initiatives in the primary care
setting to support general practitioners to manage chronic conditions.[28]
Recommendations to address provider issues:

Provide access to evidence based guidelines, supported by research, to facilitate
diagnosis and treatment allocation in lung cancer care.

For clinical guidelines to be supported by implementation strategies and processes
for monitoring quality of outcomes.

To have information sources identifying specialist lung cancer providers and
services.

To increase the awareness of lung cancer in general practice and provide
information regarding evidence based treatment guidelines.

To promote expertise and interest in lung cancer among health professional
groups.
3.3 Systems issues
The Australian health care system is in a phase of dynamic health care reform. The study
has identified a number of issues related to outcomes for lung cancer that may be
encompassed within a reform agenda.[30, 31]
Suggested foci at a systems level:

Continue to support system wide strategies to decrease smoking.

Facilitate guideline development for lung cancer care with professional groups,
non-government organisations and consumers.

Support integrated mechanisms of data management and monitoring that are
linked to clinical governance strategies.

Provide incentives and decrease barriers for health care professionals to
participate in MDTs.

Create links between health care jurisdictions to facilitate coordination of care,
monitoring of outcomes and integration of health and social services.
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3.4 Priority areas to decrease variations in lung cancer
management in Australia
In the second phase of the consultation survey, experts were asked to identify strategies
to improve lung cancer care. These are listed in Table 1 ranked by number of responses.
Table 1: Strategies to decrease variation in lung cancer outcomes
Ranking
Responses
1.
Educational initiatives for general practitioners with strategies to increase the awareness and
recognition of symptoms (72)
2.
Referral and access to MDTs to assist in diagnosis, staging and treatment (65)
3.
Evidence based guidance to promote timely investigation and diagnosis of lung cancer (52)
4.
Strategies to increase public awareness of lung cancer, diagnostic strategies and available
therapies (51)
5.
Recommendations to assist clinicians in monitoring patients with ongoing symptoms when
investigations do not initially confirm lung cancer (37)
6.
Guidelines for MDTs specific to lung cancer (36)
7.
Strategies to improve communication across the public and private sectors (21)
8.
Information targeted at consumers and health care professionals on the benefits of
chemotherapy and radiotherapy for managing symptoms and improving quality of life (20)
9.
Monitoring of quality indicators, such as time from diagnosis to treatment (16)
10.
Identification of incentives for the private sector to participate in MDTs (15)
11.
Promotion of lung cancer specialists in surgery and oncology (14)
12.
Guidelines on the indications for surgery in lung cancer (9)
13.
Access to information identifying the location of lung cancer specialists (8)
14.
Algorithms to calculate co-morbidity risk for all types of lung cancer treatments (6)
3.5 Initiatives in the short, medium and longer term
The strong association between the incidence of lung cancer, smoking and social
determinants means that addressing the variation in lung cancer outcomes is a complex
and multifaceted process.[1] Already there are initiatives being undertaken by Federal
and State Governments in Australia to achieve a decrease in tobacco usage. These
initiatives are critical to decreasing the burden of lung cancer in the longer term.
Downstream, where patients are at high risk of lung cancer, the following factors need to
be addressed in the short and medium term:

Increase awareness of lung cancer in general practice.

Target factors that result in patients with probable lung cancer accessing specialist
care for diagnosis, tumour staging and treatment.

Promote strategies to facilitate consumers and health professionals' awareness of
the risk of lung cancer and evidence based treatment.
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
Implement processes to ensure coordination of care to maximise the most
efficient use of resources, such as clinical networks.

Review clinical guidelines to identify evidence—based treatment strategies and
guidelines for MDTs, tailored to the Australian health care system, recognising the
importance of the general practitioner in identifying patients at high risk in
primary care.

Adopt data collection mechanisms to identify potential variations in lung cancer
management and outcomes and identify foci for interventions.

Incorporate benchmarking measures, such as time from referral to diagnosis, as
part of clinical guideline development.

Target and tailor interventions to address lung cancer in high risk populations,
particularly Aboriginal populations, and those in low socioeconomic groups.

Increase funding for basic, clinical, translational and outcome lung cancer
research.
In the longer term, a coordinated approach between government, professional
organisations, non-government organisations and consumers is needed to address the
burden of lung cancer in Australia.[29] These processes will need to focus on addressing
social determinants of health and ensuring equitable access to health care and greater
coordination across the health care system.[32]
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4. Approach
This study was conducted through undertaking a literature review and a three step
consultation process as indicated in the diagram below.
Findings from the literature review and three streams of consultation are synthesised
throughout the report. For clarification, throughout the report, those that participated in
the Expert Consultations are to be discussed as Expert Participants (EPs) and those that
participated in Consultations Round 1 and 2 are to be discussed as Survey Participants
(SPs). Qualitative data is provided in Appendices.
4.1 Literature review
Given the broad range of issues covered by this project, a wide variety of studies were
reviewed including; quantitative, qualitative, mixed method and descriptive studies,
literature reviews and government reports (Appendix 1). In particular, existing clinical
guidelines were reviewed for relevance to the study (Appendix 2). The studies retrieved
during the literature search were examined for relevance against the scope of the
project. With the exception of a systematic review of MDTs, the majority of studies
reviewing treatment patterns included analysis of administrative data.
4.2 Consultation phase
There were three streams to the consultation phase: interviews with health professionals
and consumers and two surveys sent to a broad range of health professionals. These two
surveys (round 1 and 2) involved a modified Delphi process undertaken using two
different sets of questions and a secure online platform.
The participants were recruited by snowball sampling to ensure broad coverage of health
professionals and national coverage using professional networks and a commercial
distribution network that sent the survey to 1500 people. The surveys were sent to the
same people but it is not known whether different individuals responded to the two
surveys as participants were not identifiable. Questions were designed to elicit level of
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|7
agreement to statements. The majority of questions were framed in a Likert score
framework with higher scores identifying a higher level of agreement.
4.2.1 Expert Consultations
Consultations were conducted with 34 experts—six respiratory physicians, four medical
oncologists, two public health physicians, four palliative care specialists, three
consumers, one radiologist, four general practitioners, one surgeon, two care
coordinators, one dietician, three Aboriginal Health Care Workers and three individuals
working within cancer policy implementation. Participants were identified based upon
expertise, availability and clinical leadership roles. The length of interviews varied from
10 minutes to 45 minutes. Detailed notes were taken from each consultation and
analysed using qualitative thematic analysis.[33, 34] Themes were organised into
system, patient and provider factors as these have been identified as integral to driving
health care reform.[35] Verbatim quotes to illustrate these themes are provided in
Appendix 7.
4.2.2 Consultation Round 1
Consultation Round 1 received 154 responses to the survey with a completion rate of
74.7% (137 respondents were included in the analysis). Detailed sociodemographic data
are provided in Appendices 5 and 6. Not all respondents completed all questions.
Correction for missing data was not undertaken as part of the analysis. Sixty-five per
cent of the respondents were from the acute care or specialist sector and 22% from
primary care.
4.2.3 Consultation Round 2
Consultation Round 2 elicited strategies to improve lung cancer care and received 150
responses with a completion rate of 73.3%. Seventy percent were from the acute care or
specialist sector and 17% from primary care.
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5. Results
5.1 Burden of disease
Globally, lung cancer is the leading cause of cancer death, accounting for 1.3 million
deaths per year.[36, 37] Deaths are increasing in the developing world as a consequence
of the promotion and uptake of tobacco use. In Australia, lung cancer remains a
significant and growing challenge. Lung cancer is the leading cause of death due to
cancer and is the second leading cause of all deaths in men and the fifth highest in
women.[38] Among females, incidence is projected to increase by 38% to 4,001 cases by
2011 and in males by 17% to 6,301 cases by 2011.[39] This increase is primarily
attributable to past high smoking rates. Of note for 2010, World Tobacco Day had a
gendered theme for the first time underscoring the increase in smoking rates in women.
For many people with lung cancer (approximately 80%), their disease is inoperable
because it has been diagnosed at an advanced stage.[38] Of those diagnosed with lung
cancer, 35% will be alive after one year and only 8% at 10 years.[40] Many disparities in
health outcomes are attributable to patient, provider and systems issues, some of which
can be addressed by increasing awareness. In lung cancer, there is increasing recognition
of the role of genetics and epigenetic factors in identifying higher risk populations.
However, in lung cancer, there are some specific issues which contribute to adverse
outcomes. These include:

The absence of a valid and reliable screening test for lung cancer[41]

The strong association of smoking with lung cancer and associated stigma and
shame which may indirectly influence outcomes when people consider themselves
blameworthy for their predicament[42]

Late presentation [43]

Co-morbid conditions particularly COPD and CHD[44]

A nihilistic view of lung cancer among some clinicians and patients[45]

The low prevalence of lung cancer in general practice limiting experience and
knowledge of local networks and best practice

Limited access to or awareness of MDTs

Lack of integration and coordination across data management systems

Delays in diagnosis, staging and treatment

Lack of coordination of treatment across public and private sectors

Lack of awareness of treatment of lung cancer and the potential for survival

Many professional groups contributing to improving outcomes (e.g. general
practice; surgery; respiratory medicine; medical oncology; radiation oncology;
radiology). This can also challenge guideline development
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
Increasing numbers of older people (current and previous smokers) developing
lung cancer as the population ages[46]

Costs associated with lung cancer care[47]

The cultural diversity of Australia and high rates of smoking in some population
groups.[29]
Internationally, in addition to advances in biomedical treatment, many of the
improvements in lung cancer care have resulted from increasing awareness, developing
clinical guidelines and implementation strategies and the fostering of clinical leadership,
networks and resources. Improvements in coordination of clinical care and
communication between health professionals are not unique to lung cancer and could be
addressed by recently announced national health reform initiatives.[48, 49]
5.2 Guidelines
Several guidelines encompass an evidence based approach to lung cancer care in
Australia. They include the Clinical Practice Guidelines for the Prevention, Diagnosis and
Management of Lung Cancer 2004 and the Assessment and Management of Lung Cancer
Evidence based guidelines: A Guide for General Practitioners 2005, both produced or
supported by The Cancer Council Australia and approved by the National Health and
Medical Research Council; and the Smoking Cessation Guidelines for Australian General
Practice: Practice Handbook 2004. Currently, there are no recommended treatment
timelines for lung cancer in Australia. Internationally, there are a range of guidelines,
varying in the degree of prescription. See Appendix 2 for a list of international lung
cancer guidelines.
5.3 Practice
The small number of individuals with lung cancer presenting to an individual practitioner
in primary care mean that health professionals are often less attuned to the likelihood of
lung cancer. In fact, several GPs in this study said that they did not see lung cancer in
their practice. However, one general practitioner working in an Aboriginal Medical Service
commented that there should be an increased emphasis on considering the possibility of
lung cancer in chronic care programs and Adult Health Checks. Concerns relating to
radiation exposure and the risks associated with biopsies may challenge appropriate and
timely diagnosis. In addition, when cancer is suspected and awaiting definitive diagnosis,
delays can occur. One medical oncologist commented: "Well by the time the patient gets
to the GP, the chest X-Ray gets reported, the patient goes back to the GP then goes to
the respiratory physician, who orders more tests, waits for the PET scan, then waits for a
review appointment and then has a biopsy scheduled—weeks and sometimes months
march on (EP)." Another medical oncologist commented: "I even have one patient who
had three admissions to the Emergency Department with shortness of breath, abnormal
findings were noted on the chest X-Ray but they still didn't get to the right specialist and
this is in a capital city (EP)." Consultations have revealed difficulties with access to timely
and appropriate treatment. Ideally, a strengthening of a coordinator role may achieve
efficiencies and better outcomes. An expert participant said that lung cancer was the
'poor relation' and the model of breast cancer with community engagement, awareness,
research and innovation was something to aspire to. The lack of interest in some
specialties was also commented on particularly in respiratory medicine—"there is much
more emphasis on sleep (medicine) in advanced training than lung cancer" (EP).
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5.4 Research
Lung cancer research in Australia receives less public funding than other cancers.[50] No
data were obtained on the amount of private funding for lung cancer research. In
addition, in the last 20 years, the AIHW has not produced a publication on lung cancer;
however it has produced many on specific cancers including breast, cervical, ovarian,
bowel and skin cancer. An expert participant commented that increasing the emphasis on
basic research will have a flow on effect on applied and health system research.
Although the study focused on the process of diagnosis and management, expert
consultation reinforced the public health approach to decreasing smoking and increasing
the awareness of the signs and symptoms of lung cancer amongst the general public and
primary health providers. An important observation of the research, and also of concern
to experts, is the absence of standardised reporting systems to monitor lung cancer
management and outcomes. The majority of respondents identified the need for
improved diagnostic and technical solutions to improve care. A strong theme from the
expert consultations was that addressing the improvement of process issues, particularly
the time of identification of a suspicious lesion to definitive diagnosis and treatment, may
leverage significant improvements in outcomes. Expert participants (n=8) found that in
their experience, delays in receiving treatment of up to several months could occur,
particularly in remote locations. These delays are of concern in a condition with such a
poor prognosis.
Process management and quality improvement may facilitate improvements and
decrease variations in care.[41] Delays were not confined to regional and remote
centres. Three experts felt that in outer metropolitan regions similar delays were
occurring. The reasons for perceived delays are complex and multifaceted. One Expert
Participant said. "It is who makes the decision that makes the difference". Similar issues
were raised in the online surveys. Overwhelmingly, MDTs emerged as a significant
element of the solution to coordination and appropriate diagnosis and staging. Implicit in
the identification of the MDT was the recognition of the need to cater specifically for lung
cancer patients and to identify appropriate providers and services. One medical
oncologist interviewed had organised their clinic so that urgent cases could be readily
accommodated and state-based tumour groups facilitated networks and referrals.
The role of the GP in monitoring individuals at high risk, facilitating the correct diagnosis
and supporting the patient and their family during treatment and symptom management
was emphasised. Engaging the GP, as gatekeeper to specialist services, is an important
factor in ensuring timely diagnosis and access to appropriate treatment. Referral and
refinement of care pathways once referred for specialist care and promotion of
communication, coordination and integration across the private and public sector, have
emerged from this review as factors to decrease variability in treatment and
improvement in outcomes.
Expert participants spoke of the barriers leading to late presentation. The barriers were
thought to be multifactorial, particularly in the Aboriginal population. There are many
issues that result in Aboriginal Australians presenting late and, as a result, having a poor
prognosis with a very small proportion receiving treatment. Three experts considered
that the Aboriginal population under-reported their morbidity related to smoking and
COPD. In addition, the expert participants suggested that lung cancer is not always seen
as a treatable health issue within the Aboriginal community and amongst primary
healthcare professionals.
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The issue of stigma arose throughout the consultations, particularly with the consumer
representatives. A consumer who has never smoked remarked that smoking status was
always the first question asked by health professionals. Although this is understandable
and part of best practice, perhaps health professionals could approach such matters with
greater sensitivity.[51] For those who have smoked or who currently smoke, issues of
guilt and shame impact upon the decision to seek healthcare. For the non-smoker, there
was the additional distress of believing the diagnosis was unfair. Health professionals'
must therefore take this into consideration, particularly when dealing with vulnerable
groups.
Consumers also described that the time of diagnosis was the most distressing period, as
they were faced with making many decisions as well as coping with the emotional impact
of the diagnosis. The three consumers interviewed found that at diagnosis there was little
support and little information provided. They found it challenging to navigate the
complexities of the health care system. This issue of limited access to information was
not only raised by consumers but also health professionals. Expert participants
considered that options and treatments are not always accurately conveyed to the
patient. Experts also suggested that the patient's perceptions of treatments, such as
chemotherapy and radiotherapy may impact on an individual's reticence to undergo
therapy. It was considered that patients are concerned about the morbidity associated
with the treatments, particularly as the disease is known to have a poor prognosis.
However, in spite of these factors being identified, it was acknowledged that patients
making these choices were in a minority. "Very few people when faced with the facts
refuse treatment "(Surgeon EP), "Dad always said he wouldn't go through chemo after
watching my mother go through it, but when he was diagnosed, even though his
prognosis was poor, he went ahead with radiotherapy and chemotherapy (Consumer EP).
5.5 Findings of Consultation Round 1 and Consultation
Round 2
5.5.1 Waiting times and access to treatments
In the expert consultations, concern was expressed regarding waiting times and access
to treatments. It was therefore considered important to explore this issue in the survey.
Consultation Round 1 revealed that of those Survey Participants that responded to the
question, 30% did not have access to biomarkers such as epidermal growth factor
receptor (EGFR) and 12% did not have access to PET scans. However, waiting times for
investigations recorded in Survey 1 were generally consistent with recommended
international benchmarks (see Appendix 5). Qualitative data demonstrated better access
to services via the private sector as a factor in facilitating timely treatment and also the
opportunistic aspect of accessing optimal networks.
Respondents were asked about statements on barriers and facilitators that were
identified in the literature and during preliminary consultations. Mean scores shown in
Table 2 indicate that the poor prognosis had a minimal influence on referral for
treatment. Emerging from interviews was the sense that patients wanted treatment, but
sometimes costs associated with travel were a deterrent to accessing it.
Table 2: Views on referral for investigation, diagnosis and management of lung
cancer
Question asked: Over the next seven statements we are interested in identifying your
level of agreement with a series of statements. Each statement will be marked 1 to 10.
Literature review and national consultation on factors impacting on lung cancer outcomes
| 12
One (1) denotes that you strongly disagree with the statement while 10 shows that you
strongly agree with the statement.
Questions
Mean score
(standard
deviation)
No. of responses
to question
There is good access to diagnostic services in my practice setting
8.00 (2.15)
113
In my clinical setting there is access to a multidisciplinary care team to
decide treatment options
7.68 (2.41)
110
High levels of comorbidities among patients makes it challenging to
manage patients with lung cancer
7.30 (2.10)
110
There are clear guidelines for diagnosis and management of lung cancer
in the oncology setting
7.24 (2.13)
110
There are clear guidelines for diagnosis and management of lung cancer
in general practice
5.48 (2.41)
109
High levels of comorbidities make me less likely to pursue aggressive
treatment
5.40 (2.76)
110
Patients are reluctant to proceed with lung cancer treatment because of
the fear of the side effects of treatment
4.89 (2.43)
110
Distance impacts on my ability to access services for my patients
4.23 (3.08)
110
Overall the prognosis for lung cancer is poor and this influences my
readiness to refer and initiate treatment
3.35 (2.36)
110
5.5.2 Access to care
The lowest mean scores impacting on the access to services were transport and
residential facilities. In interviews and consumer consultations travel to specialist centres
was discussed frequently as a barrier to treatment. Balancing this perception is the
importance of communicating to consumers the need to travel to access specialist
treatment. Providing transportation, housing and support services were identified as
important to ensure optimal management. The increased costs associated with travel and
the capacity to obtain better access through the private system were identified in health
professional and consumer consultations. These comments show the influence of socioeconomic status and other factors such as distance in accessing care and explain to some
extent the observed survival differences.[40] In both consultation rounds, strong support
for MDTs was demonstrated. The MDTs were seen to be critical for accessing expert
opinion and optimal treatment decisions (Table 3).
Table 3: Participants' views on clinical environment
Question asked: Over the next series of questions we are interested in identifying your
level of agreement with a series of statements. Each statement will be marked 1 to 10.
One (1) denotes that you strongly disagree with the statement while 10 shows that you
strongly agree with the statement.
Questions
Mean score
(standard
deviation)
No. of responses
to question
Multidisciplinary care teams are integral to improving lung cancer care
8.69 (1.98)
107
The coordination of lung cancer services in my setting is adequate to
provide timely, evidence based therapies
7.29 (2.19)
107
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Questions
Mean score
(standard
deviation)
No. of responses
to question
There is adequate resources in my clinical practice setting to provide care
according to clinical guidelines and treatment recommendations
6.91 (2.67)
106
In my clinical practice setting we routinely review lung cancer cases to
critically discuss and evaluate management
6.11 (3.32)
104
Travelling to tertiary centres for treatment influences patients and their
families motivations to access treatment
6.07 (2.45)
107
In my clinical practice setting there are clinical guidelines for screening,
diagnosis and management of lung cancer
5.98 (3.03)
104
I am readily able to access data to allow me to monitor clinical outcomes for 5.77 (2.99)
patients with lung cancer
102
Waiting times for tests such as PET scans influence the timely access to
treatment
5.75 (2.83)
102
Lack of coordination across multiple providers adds to unnecessary delays in 5.57 (2.61)
patient treatment
107
In my practice there are clear protocols for the management of symptomatic 5.23 (2.92)
patients with normal chest X-rays
104
Lack of coordination of care impacts on the diagnosis and referral for the
management of lung cancer
4.98 (2.63)
106
The stigma associated with lung cancer impacts on individuals' motivation to 4.79 (2.66)
access services and treatments
107
Many health professionals fail to appreciate the need for urgent referral and
management of lung cancer
4.74 (2.85)
108
Health care professionals have a bleak view of the prognosis of lung cancer
and are reticent to refer for definitive treatment
4.17 (2.38)
109
There is limited expertise for the management of lung cancer in my clinical
practice setting
2.94 (2.39)
106
Following analysis of the data from Consultation Round 1 and after consultation with
Cancer Australia, the second survey was designed to obtain consensus on where
guidance material would have the greatest impact on improving outcomes. In
Consultation Round 2, 45% of respondents stated that they did not perceive there to be
variations in the use of staging and diagnostic procedures. Whereas 51% described that
there were delays in the diagnosis and staging of lung cancer. Over 30 of 150 Survey
participants provided explanations of variation in the free text fields (see Appendix 6).
Almost half (49%) of the participants agreed or strongly agreed that variations in the
evidence-based use of diagnostic and staging investigations of lung cancer contribute to
variations in outcomes, and an additional 26% somewhat agreed. When asked about
factors impacting on the accurate and timely diagnosis of lung cancer, patient-related
factors such as delay in seeking treatment and distances needed to travel for treatment
were seen as issues impacting on care (Figure 1).
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Figure 1: Factors impacting on diagnosis
(1 = Strong disagreement, 10 = Strong Agreement)
Issues related to systems and processes were reinforced many times with Expert
Participants. One surgeon commented, "If they get to my clinic it is all OK, I know the
right people with the expertise and experience— it is a one stop shop". Half of the
participants (51%) saw there was a variation in appropriate and timely referral for
diagnostic and staging investigations in their practice environment. Of those that
answered (48%), overwhelmingly 93% saw that these variations contributed to adverse
outcomes, although 78 participants (52%) did not answer this question suggesting that
this is a challenging concept and perhaps challenging to prove in individual clinical
settings. The majority of participants (59%) did not have clear protocols for the
monitoring of patients with respiratory symptoms who are not diagnosed with lung
cancer on initial presentation and 61% of participants stated that guidance material to
monitor patients with a high risk of lung cancer would be beneficial.
Over half of participants (53% at staging and diagnosis; 58% at treatment) reported
being able to access an MDT. This was reflected in the Expert Consultations. Figure 2
presents opinions on who should participate in an MDT. Although the involvement of GPs
was considered to be optimal, practical considerations to participation were cited as
potential barriers to involvement. Expert Participants reported the need to explore issues,
such as video conferencing, to ensure access to expert opinion especially in relation to
complex cases.
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Figure 2: Participants that should be included in the multidisciplinary team
Just under half of participants (42%) had observed variations in access to MDTs. The
time taken to participate in these meetings and the location of specialists across the
public and private sectors were seen as the greatest barriers. Expert consultation and
survey results identified that the interface between the public and private sector was the
greatest challenge in configuring an MDT for treatment and planning.
Figure 3: Information to be included in guidance material
(1 = Strong disagreement, 10 = Strong Agreement)
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5.6 Priority areas for Guidance Material
5.6.1 Clinical guidance material
In the Expert Consultations, Expert Participants stated that although guidelines existed,
there was little emphasis on risk assessment facilitating an early diagnosis. When asked
to identify where clinical guidance materials would have the greatest impact, all areas
listed received strong support, particularly investigations leading to early diagnosis,
guidelines for diagnosis and staging and outcomes for measuring the quality of lung
cancer care. Figure 3 identifies areas to target for clinical guideline development.
5.7 National studies
5.7.1 Patient factors
Achieving earlier presentation is critical, therefore it is important to consider individuals'
knowledge, attitudes, beliefs and health seeking behaviours. It is important to note that
smoking cessation does not mean that the risk of lung cancer does not remain.[25, 52]
Therefore it is important that there is ongoing surveillance to monitor symptoms in
former smokers. Identifying strategies that increase support to patients and decrease the
uncertainty associated with diagnosis have been identified as potentially useful.[23, 26]
Addressing barriers in high risk populations, such as Aboriginal populations, is recognised
as important.[53-55]
5.7.2 Provider factors
There are limited Australian data addressing specific provider factors impacting on
diagnosis, referral and treatment including thresholds for referral, follow-up after normal
CXR if symptomatic, knowledge of MDTs and beliefs about the value of cancer specific
treatment of lung cancer. The consultation phases have elucidated some of these factors,
such as perceptions of nihilism.
5.7.3 Systems issues
Data are available showing that in some instances, there is less than optimal access to
treatment and that reorganisation of the health care system can afford benefits.[56-58]
For example, radiotherapy is an important aspect of lung cancer treatment. A series of
studies undertaken by Vinod in NSW describes less than optimal use of radiotherapy,
optimal utilisation rate being between 45% and 68% at initial diagnosis.[55] The
Queensland Integrated Lung Cancer Outcomes Project (QILCOP) uses a data collection
system based on data elements from the Australian National Cancer Control Initiative
(NCCI) common clinical data set for lung cancer.[51] Jiwa et al reviewed 950 lung cancer
patients registered on the cancer registry database from April 2006 to March 2007. [13]
Minimal improvements in lung cancer outcomes were noted from previously published
studies. Challenges due to long distances were also identified.[59]
Literature review and national consultation on factors impacting on lung cancer outcomes
| 17
5.8 International studies
5.8.1 Patient factors
International studies reveal that delays in seeking health care impact on appropriate and
timely diagnosis. The stigma and shame associated with smoking has been identified as a
factor contributing to delays.[60] Approximately two thirds of patients with NSCLC are ≥
65 years old. Surveillance, Epidemiology, and End Results data[61] suggest that the
percentage of patients with lung cancer who are > 70 years old is close to 50% in US
studies, yet elderly patients are generally underrepresented in clinical trials. Participation
of elderly patients with advanced lung cancer in national clinical trials has ranged from
15% in the early 1990s to 29% in more recent studies.[62]
5.8.2 Provider factors
Surgeons who specialise in lung cancer surgery appear to achieve better outcomes.[63,
64] Of patients who did not receive chemotherapy, 36% were never assessed by a
physician who provides chemotherapy. Patients living in certain areas, those diagnosed in
more recent years, and those who received care in a teaching hospital were all more
likely to see a cancer specialist. These factors were unrelated to subsequent treatment
decisions, however. Conversely, age and comorbidity did not have a significant effect on
whether a patient was seen by an oncologist, but they were associated with the likelihood
of subsequently receiving chemotherapy. Nonmedical factors are important determinants
of whether a lung cancer patient is seen by a physician who provides chemotherapy.
After seeing such a physician, treatment decisions seem to be mostly explained by
appropriate medical factors. Racial and socioeconomic disparities still exist both at
diagnosis and treatment phases. As therapeutic options expand, referring physicians
need to ensure that patients are given the opportunity to consider all treatment
options.[65] A survey undertaken in New Zealand identified that specialist groups varied
in their choices of treatment for NSCLC and international recommendations were not
always followed.[65]
5.8.3 System issues
Racial and ethnic disparities in accessing treatment have been consistently noted. [66,
67] However, studies in other areas, such as acute myocardial infarction, show that
these differentials can be addressed by focusing on organizational performance. [68, 69]
What is evident is that developing clinical practice guidelines, augmented by
implementation and monitoring strategies can afford benefits. [70] For example, a
recently published article from the UK has shown that improvements can be made by
implementing quality assurance processes and benchmarking exercises. [71]
5.9 Data quality
Compared to other countries, the quality of population-based Australian cancer data is
good, however differences in timeliness across jurisdictions may affect the availability of
data at both local and national levels. Without collation of national data, populationbased registries have limited applicability beyond public health surveillance and
research.[72] The lung cancer data set under development is expected to include more
detailed information such as staging at diagnosis, histological sub-type, treatment, time
to recurrence and outcomes other than survival. This will provide more specific
information on treatment outcomes and allow more targeted research to be undertaken.
Literature review and national consultation on factors impacting on lung cancer outcomes
| 18
Clinical registry models exist in all states, but vary between states. Western and South
Australia have hospital-based registries, New South Wales has a pilot clinical registry
program, Queensland has a web-based data system, and Victoria has introduced
legislative provision for the central collection of National Cancer Control Initiative (NCCI)
Clinical Cancer Core Data Set items in its population-based registry.[13, 53-55]
At present the data relating to incidence, mortality and survival across gender, age,
geographical location, Aboriginal and non-Aboriginal populations, socioeconomic status
and histological type are included in state data sets, but are not always available from
Cancer registries. However, at a national level such stratification of lung cancer data
rarely exists. Whilst data on incidence and mortality is complete, data collected during
the course of the disease are not publically available in reports or publications. Thus,
data on differences across varying groups in outcomes, treatment offered, percentage of
patients histologically confirmed, and treatment ultimately obtained, are lacking and
have not been included in state and national publications.
5.10 Diagnostic and treatment data
With the exception of isolated research studies in Australia there is no consistent
information on the percentage of patients with histologically confirmed lung cancer who
were offered or received active treatment.[68] Including this in existing data systems
may leverage benefits.[73]
5.11 Aboriginal Australians/other Australians and
urban/rural comparisons
Aboriginal incidence and mortality data exhibit a pattern that is different to that of the
non-Aboriginal population. Lung cancer incidence was significantly higher in the
Aboriginal population than in the non-Aboriginal population in the 50-64 year age groups
in the Northern Territory, Western Australia and South Australia and was the most
common Aboriginal cancer in all three jurisdictions.[74] Across all three jurisdictions,
Aboriginal populations had higher rates of smoking than the non-Aboriginal population
and thus lung cancer is an important comparative indicator of health between these
populations.[74]
Lung cancer is the most common cancer amongst Aboriginal Australians and accounts for
the highest number of cancer deaths (27%).[75] Aboriginal Australians are 2.5 times
more likely to die within five years of a cancer diagnosis than non-Aboriginal
Australians.[2] A number of inter-related factors contribute to this pattern including
death from co-morbidities, high exposure to risk factors, a lower cancer detection rate
linked to higher co-morbidities, and lower number of deaths attributed to lung cancers
for Aboriginal persons aged 60-70 years. There is minimal information available on
survival rates for Aboriginal Australians.[74] While the high mortality rate can be linked
to a high incidence, the review revealed other explanations such as spiritual and cultural
beliefs, barriers to diagnosis, management and treatment such as distance, low
socioeconomic status and language. As mentioned above, the quality of the Aboriginal
data are not consistent. Therefore this inconsistency must be taken into consideration
when examining statistical data.
Further, lower detection and early deaths may eliminate people who would have
developed the disease later and those where the cancer has a long latency period. Other
Literature review and national consultation on factors impacting on lung cancer outcomes
| 19
possible factors include under-investigation by health practitioners of the Aboriginal
population over 60 years.[74]
Overall, the literature shows clear disparities in diagnosis and treatment across a number
of measures and aspects. Aboriginal Australians were more likely to receive delayed or
incomplete treatment, had lower admission rates and an overall later diagnosis of lung
cancer. Aboriginal Australians were also less likely to use private medical services, to be
recommended for curative treatment and to have treatment interstate. Furthermore,
there is generally low participation in cancer screening programs by Aboriginal
Australians.[18, 28, 76-93]
Rural and remote living has a well documented negative correlation with access and
outcomes for patients diagnosed with lung cancer.[76] Pre-diagnostic barriers include:
lack of knowledge of risk;[18] reluctance to seek health care; late presentation;[28, 89]
and high rates of comorbidities.[76]
Recommendations to improve rural/remote access and health knowledge include:
increased dissemination of cancer prevention knowledge and practices [78, 89, 90] to
improve patient knowledge of risk and encouragement of positive health seeking
behaviours. Post-diagnosis barriers include: distance to 'local' GP;[18, 82, 91] limitations
to treatment options due to late stage diagnosis and/or comorbidity;[80, 89] individual
socio-economic status (SES) and/or private health insurance status;[77, 91, 92]
shortages of healthcare providers available rurally;[83] currency of treatments and
facilities;[86, 90] and limited access to psychological/bereavement services.[88]
With only 18.4, 13.4, 4.7 outer regional, remote, and very remote allied health
professionals, respectively, per 10,000 capita,[18, 84] an increase in rural/remote health
professionals is recognised as necessary to improve services for lung cancer rural/remote
patients, however the availability of a MDT is suggested to be most beneficial for
improving patient outcomes.[91] A suggested technique was the use of telemedicine,[78,
80] which has the potential to attenuate the effects of distance, socioeconomic
differentials, health professional shortages, and barriers to early diagnosis. Poorer
outcomes for rural lung cancer patients is well documented in the literature,[78, 79] with
lung cancer said to be responsible for 12% of the excess new cases of cancer in all
regional areas (excess is defined here as the difference between the number of observed
new cases and the number of new cases expected if Major Cities age-specific rates were
applied to the population in each area). [94] Barriers faced by those living in rural and
remote areas include: distance to care;[18, 91] longer waiting times;[92] and poor
coordination of follow up processes with specialists.[28, 91] All of these impact on patient
treatment and compliance.[86] Some benefits of an awareness of these factors include:
continuity of care from primary to palliative, and increasing the awareness of issues
facing rural communities.[91] Mortality rates are highest in patients living remotely,[79]
with lung cancer being the second highest cause of premature death in men [82, 83]
with a low five year survival rate.[85] Lung cancer is the third highest avoidable
mortality,[85, 87] with rates found to be higher in rural areas compared to metropolitan
areas, and higher still in remote Local Government Areas.[40]
Table 4 shows the difference in one year and five year survival for lung cancer in five
regional categories between 1997 and 2004. There were differences in survival between
major cities and outer regional areas for both one year and five year survival. Differences
in relative survival were even more pronounced between major cities and remote and
very remote areas for both one year and five year survival.[40]
Literature review and national consultation on factors impacting on lung cancer outcomes
| 20
Table 4: Relative survival by region, lung cancer diagnoses in 1997-2004
Year
Major cities (%)
95% CI
Inner region (%)
95% CI
Outer region (%)
95% CI
Remote and very remote
(%)
95% CI
One year
36.5 (36.1-37.0)
34.2 (33.4-34.9)
31.2 (30.1-32.3)
27.6 (25.2-30.1)
Five year
12.4(12.1-12.8)
11.3(10.7-11.8)
8.7(8.0-9.4)
9.9(8.2-11.7)
Source: Australian Institute of Health and Welfare, Cancer Australia and Australasian Association of Cancer
Registries. Cancer Survival and Prevalence in Australia: Cancers diagnosed 1982-2004. Cancer Series, 2008
[72]
5.11.1 Priority areas for guidance material
In the interviews, participants stated that although guidelines existed, there was limited
emphasis on the investigations leading to an early diagnosis. One GP suggested that
strategies for monitoring patients at high risk were not apparent and in undertaking case
finding for chronic conditions that they were 'not really thinking about lung cancer' (EP
GP) and noted that this was something that they would be more aware of in future
consultations.
5.11.2 Patient, provider and systems issues
Based upon expert consultations, specialists identified that comorbidites and age were
factors considered in appraising the risks associated with treatment, although all general
practitioners interviewed indicated that they would refer to a specialist if a lesion was
identified. Expert participants disclosed that some health professionals were not aware of
best practice lung cancer management and did not know that symptoms could be
relieved by radiotherapy and chemotherapy. Generally, it was considered that the most
common reason for patients deciding not to pursue treatment was the need to travel long
distances for treatment and the associated costs and burden to family members. In
general, follow up protocols for people at risk of lung cancer who have ongoing
symptoms but normal chest X-Rays were not identified as being available.
5.12 Summary of review of evidence and consultation
methods
The different methods used as part of this review have allowed a multifaceted view of the
issues impacting on variations in lung cancer care. The sampling method, using an online
survey, has allowed for a scoping of national issues, across the public and private sector,
and identified recommendations for policy, practice and research. Recommendations are
made within the scope of Cancer Australia's leadership role in cancer control.
5.13 Recommendations for guidance material and further
research
Several informants thought that increasing resources would decrease variations in
outcomes. The benefits could range from increasing community engagement to increased
investment in treatments and better coordination of care. The absence of the capacity to
monitor data from diagnosis to survival outcomes is seen as a challenge to optimal
management of lung cancer in Australia.[95]
Literature review and national consultation on factors impacting on lung cancer outcomes
| 21
5.13.1 Clinical guidance material
Based on the consultations, the review of existing Australian data, and the literature
review, clinical guidance material would support improvements in lung cancer outcomes.
Guidance material could include:

Evidence-based guidelines for risk assessment, diagnosis and treatment of lung
cancer

Recommendations for monitoring people with symptoms and at high risk of lung
cancer in general practice

Strategies to enhance the recognition of patients who warrant a chest X-ray or
referral for definitive diagnosis

Models of care delivery which would decrease variations in lung cancer treatment
and how these would best be implemented

Information regarding the composition of MDTs and mechanisms of access

A metric for evaluating the quality of lung cancer care to facilitate benchmarking.
Health professionals could be prompted to consider lung cancer in people with other
chronic medical conditions, in view of the strong association between lung cancer and
conditions such as COPD, CHF and CHD. This may increase the number of people who are
diagnosed at an earlier stage.[96]
5.13.2 Research
Expert participants identified bench top research, the development of more sensitive
tumour markers and more effective treatments as having greater scope to raise the
profile of lung cancer research. In the absence of a screening test, methods of risk
assessment, monitoring and follow-up are critical.
Many of the strategies to decrease variations in lung cancer treatment identified in this
research relate to workforce issues, access to information and clinical expertise and the
passage of patients through the health care system. Further investments in the following
may improve outcomes:

Mechanisms to promote best practice clinical decision making in primary care

Self-management strategies for individuals at high risk of lung cancer

Evaluation of clinical networks (method of delivery, coordination and evaluating
care in a defined geographical setting) in facilitating treatment

Assessments of workforce requirements in lung cancer care.
5.14 Conclusions
This study has identified that, in the opinion of experts, the most significant factors
contributing to adverse outcomes in lung cancer in Australia are late presentation and
delays in entering specialist care. Other barriers identified include distance from tertiary
Literature review and national consultation on factors impacting on lung cancer outcomes
| 22
care settings and the interface between the public and private sector. Strategies to
monitor individuals at high risk of lung cancer and streamlining processes to facilitate
efficient and timely referral for diagnosis, staging and treatment are likely to achieve
benefits. Providing information to patients and their families about what to expect when
diagnosed with lung cancer and supporting patients during the period of diagnosis and
treatment may promote adherence to treatment recommendations and diminish distress.
Literature review and national consultation on factors impacting on lung cancer outcomes
| 23
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[73] Condon JR, Barnes T, Armstrong BK, Selva-Nayagam S, Elwood JM. Stage at
diagnosis and cancer survival for Indigenous Australians in the Northern Territory.
Medical Journal of Australia. 2005;182(6):277-80.
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[74] Threlfall TJ, Thompson JR, Western Australian Cancer Registry, Department of
Health Western Australia. Cancer incidence and mortality in Western Australia, 2005.
Perth: Department of Health, Western Australia 2007.
[75] Condon JR, Armstrong BK, Barnes T, Zhao Y. Cancer incidence and survival for
indigenous Australians in the Northern Territory. Australian & New Zealand Journal of
Public Health. 2005 Apr;29(2):123-8.
[76] Hancock L, Sanson-Fisher R, Redman S, Reid A, Tripodi T. Knowledge of cancer risk
reduction practices in rural towns of New South Wales. Australian and New Zealand
Journal of Public Health. 1996;20(5):529-37.
[77] Australian Institute of Health and Welfare. Health in rural and remote Australia.
Canberra: AIHW; 1998.
[78] Campbell NC, Elliott AM, Sharp L, Ritchie LD, Cassidy J, Little J. Rural and urban
differences in stage at diagnosis of colorectal and lung cancers. British Journal of Cancer.
2001;84(7):910.
[79] Mathers CD, Vos ET, Stevenson CE, Begg SJ. The burden of disease and injury in
Australia. Bulletin of the World Health Organization. 2001;79:1076-84.
[80] Hall S, Holman CD, Sheiner H, Hendrie D. The influence of socio-economic and
locational disadvantage on survival after a diagnosis of lung or breast cancer in Western
Australia. Journal of Health Services Research & Policy. 2004 10/02/;9:S2:10-6.
[81] Hall S, Holman CDJ, Sheiner H. The influence of socio-economic and locational
disadvantage on patterns of surgical care for lung cancer in Western Australia 19822001. Australian Health Review. 2004 05;27(2):68-79.
[82] Jong KE. Remoteness of residence and survival from cancer in New South Wales.
Medical Journal of Australia. 2004;180(12):618.
[83] Jong KE. Rural inequalities in cancer care and outcome. Medical Journal of Australia.
2005;182(1):13-4.
[84] Conron M, Phuah S, Steinfort D, Dabscheck E, Wright G, Hart D. Analysis of
multidisciplinary lung cancer practice. Internal Medicine Journal. 2007;37(1):18-25.
[85] Piers LS, Carson NJ, Brown K, Ansari Z. Avoidable mortality in Victoria between
1979 and 2001. Australian and New Zealand Journal of Public Health. 2007;31 (1):5-12.
[86] White K. Rural palliative care: exploration of the pivotal role of primary healthcare
providers. Cancer forum. 2007;31(1):22.
[87] Daly J, Lumley J. The role of a public health journal in securing the health of the
public. Australian and New Zealand Journal of Public Health. 2008;32(1):3-4.
[88] Keane S, Smith TN, Lincoln M, Wagner SR, Lowe SE. The rural allied health
workforce study (RAHWS): background, rationale and questionnaire development. Rural
and remote health. 2008;8(4):1132.
[89] Yu XQ. Assessing the impact of socio-economic status on cancer survival in New
South Wales, Australia 1996-2001. Cancer Causes & Control. 2008;19(10):1383.
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[90] Lee SF, O'Connor MM, Chapman Y, Hamilton V, Francis K. A very public death: dying
of mesothelioma and asbestos-related lung cancer (M/ARLC) in the Latrobe Valley,
Victoria, Australia. Rural & Remote Health. 2009 07;9(3):13p.
[91] Sabesan S, Piliouras P. Disparity in cancer survival between urban and rural
patients—how can clinicians help reduce it? Rural & Remote Health. 2009;9:1146.
[92] Wakerman J, Humphreys J, Wells R, Kuipers P, Jones J, Entwistle P, et al. Features
of effective primary health care models in rural and remote Australia: a case-study
analysis. Medical Journal of Australia. 2009; 191 (2):88-91.
[93] Drury VBP, Inma CP. Exploring Patient Experiences of Cancer Services in Regional
Australia. SO—Cancer Nursing January/February 2010;33(1):E25-E31. 2010.
[94] Australian Institute of Health and Welfare. Rural, regional and remote health:
indicators of health status and determinants of health. Canberra: AIHW; 2008.
[95] Hayman NE, White NE, Spurling GK. Improving Indigenous patients' access to
mainstream health services: the Inala experience. Medical Journal of Australia.
2009;190(10):604-6.
[96] Deeks JJ. Systematic reviews in health care: Systematic reviews of evaluations of
diagnostic and screening tests. British Medical Journal. 2001;323(7305):157.
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Appendix 1: Literature Review Search Strategies
A range of strategies was incorporated to ensure all relevant and applicable data was
obtained. Over a five month period both published and unpublished literature were
reviewed.

Database searches using key words. All searches were documented by date, key
words and database(s) searched.

Journal hand searching for example in journals such as Lung Cancer and Lung and
Chest.

Internet and website hand searching was performed to obtain national and
international guidelines, reports and statistics from both government and nongovernment agencies, organisations and institutes. For example searching State
and Territory cancer registries and Cancer Councils, Australian Institute of Health
and Welfare (AIHW), USA National Cancer Institute (NCI), UK National Institute
for Health and Clinical Excellence (NICE) and National Cancer Statistics Clearing
House.

Hand searched registries such as the Peter MacCallum Cancer Centre Publication
Registry and the Cochrane Library.

Strategies to obtain grey literature included emailing key informants and asking
experts during consultations to obtain any unpublished reports, data and/or
papers.
Databases searched
The databases searched included; ABI / Inform, AMED, Australian Indigenous
HealthInfoNet, CINAHL, Cochrane Library, DRUG, Embase, Google Scholar, PsycInfo,
Medline/PubMed, Web of Knowledge (searches in Web of Knowledge includes coverage of
Current Contents Connect, Global Health, Medline, Science Citation Index, Social
Sciences Index and the Web of Science), SCOPUS, RURAL, APAIS-ATSIS, AMED, Proquest
and Health Insite.
Inclusion/Exclusion
This project included studies from January 1995 to June 2010. Given the broad range of
issues covered by this project a wide variety of studies were reviewed, including;
quantitative, qualitative, descriptive, literature reviews and mixed methods. The studies
retrieved during the literature search were reviewed for relevance against the scope of
the review. For areas where few studies have been conducted published expert opinions
were examined. Studies and data on mesothelioma were excluded from this review.
Literature review and national consultation on factors impacting on lung cancer outcomes
| 31
Appendix 2: Existing Clinical Guidelines
Table A1: Guidance Materials
Guidance Material
Organisation
Country
Year
Assessment and Management of Lung Cancer Evidence based
guidelines: A guide for General Practice
The Cancer Council of
Australia
Australia
2005
Clinical Practice Guidelines for the Prevention, Diagnosis and
Management of Lung Cancer
The Cancer Council of
Australia
Australia
2004
Smoking Cessation: Guidelines for Australian General Practice
The Cancer Council of
Australia
Australia
2004
First Line Systemic Chemotherapy in the Treatment of Advanced
Non-Small Cell Lung Cancer
Cancer Care Ontario
Canada
2010
18-Fluorodeoxyglucose Positron Emission Tomography in the
Diagnosis and Staging of Lung Cancer
Cancer Care Ontario
Canada
2007
Postoperative Adjuvant Chemotherapy in Completely Resected
Non-Small Cell Lung Cancer: Guidance for Nurses
Cancer Care Ontario
Canada
2007
Chemotherapy for Relapsed Small Cell Lung Cancer
Cancer Care Ontario
Canada
2006
Management of Unresected Stage III Non-Small Cell Lung Cancer Cancer Care Ontario
Canada
2006
Postoperative Adjuvant Chemotherapy, with or without
Radiotherapy, in Completely Resected Non-Small Cell Lung
Cancer
Cancer Care Ontario
Canada
2006
Second line or Subsequent Systemic Therapy for Recurrent or
Progressive Non-Small Cell Lung Cancer
Cancer Care Ontario
Canada
2006
Use of the Epidermal Growth Factor Receptor Inhibitors, Gefitinib
(Iressa) and Erlotinib (Tarceva), in the Treatment of Non-Small
Cell Lung Cancer
Cancer Care Ontario
Canada
2006
Postoperative Adjuvant Radiation Therapy in Stage II or IIIA
Completely Resected Non-Small Cell Lung Cancer
Cancer Care Ontario
Canada
2005
The Role of High Dose Rate Brachytherapy in the Palliation of
Patients with Non-Small Cell Lung Cancer
Cancer Care Ontario
Canada
2005
The Role of Photodynamic Therapy (PDT) in Patients with NonSmall Cell Lung Cancer
Cancer Care Ontario
Canada
2005
Prophylactic Cranial Irradiation in Small Cell Lung Cancer
Cancer Care Ontario
Canada
2003
The Role of Combination Chemotherapy in the Initial Management Cancer Care Ontario
of Limited-Stage Small Cell Lung Cancer
Canada
2003
The Role of Thoracic Radiotherapy as an Adjunct to Standard
Chemotherapy in Limited-Stage Small Cell Lung Cancer
Cancer Care Ontario
Canada
2003
Altered Fractionation of Radical Radiation Therapy in the
Management of Unresectable Non-Small Cell Lung Cancer
Cancer Care Ontario
Canada
2002
Use of Preoperative Chemotherapy with or without Postoperative
Radiotherapy in Technically Resectable Stage IIIA Non-Small Cell
Lung Cancer
Cancer Care Ontario
Canada
2002
Non-small cell lung cancer: ESMO Clinical Recommendations for
diagnosis, treatment and follow-up
European Society for Medical Europe
Oncology (ESMO)
2009
Literature review and national consultation on factors impacting on lung cancer outcomes
| 32
Guidance Material
Organisation
Small cell lung cancer: ESMO Clinical Recommendations for
diagnosis, treatment and follow-up
European Society for Medical Europe
Oncology (ESMO)
2009
Standards, options and recommendations (SOR) for the
French National Federation
France
perioperative treatment of patients with resectable non-small cell of Cancer Centers (FNCLCC)
lung cancer
2007
Management of patients with lung cancer. A national clinical
guideline
Scottish Intercollegiate
Guidelines Network
Scotland
2005
Pemetrexed for the first-line treatment of non-small cell lung
cancer (TA181)
National Institute for Health
and Clinical Excellence
(NICE)
United
Kingdom
2009
Control of pain in adults with cancer (106)
Scottish Intercollegiate
Guidelines Network (SIGN)
United
Kingdom
2008
Erlotinib for the treatment of non-small cell lung cancer
National Institute for Health
and Clinical Excellence
(NICE)
United
Kingdom
2008
Pemetrexed for the treatment of non-small cell lung cancer
(TA124)
National Institute for Health
and Clinical Excellence
(NICE)
United
Kingdom
2007
Lung Cancer; The diagnosis and treatment of lung cancer
National Institute for Health
and Clinical Excellence
(NICE)
United
Kingdom
2005
Referral guidelines for suspected cancer in adults and children
National Collaborating
Centre for Primary Care
United
Kingdom
2005
American Society of Clinical Oncology Clinical Practice Guideline
Update on Chemotherapy for Stage IV Non-Small Cell Lung
Cancer
American Society of Clinical
Oncology
United
States
2009
Lung Cancer 2009 Treatment Guidelines
Providence Health &
Services, Portland, Oregan
United
States
2009
NCCN Clinical Practice Guidelines in Oncology Non-Small Cell
Lung Cancer
National Comprehensive
Cancer Network (NCCN)
United
States
2009
ACR Appropriateness Criteria nonsurgical treatment for non-small American College of
cell lung cancer: poor performance status or palliative intent
Radiology
United
States
2008
Clinical Practice Guideline Update: Use of Chemotherapy and
Radiation Therapy Protectants
American Society of Clinical
Oncology
United
States
2008
Guidelines for Treatment of Cancer: Small Cell Lung Cancer
National Comprehensive
Cancer Network (NCCN)
United
States
2008
Guidelines for Treatment of Cancer: Non-Small Cell Lung Cancer
National Comprehensive
Cancer Network (NCCN)
United
States
2008
Bronchial intraepithelial neoplasia/early central airways lung
American College of Chest
cancer: ACCP evidence-based clinical practice guidelines (2nd Ed) Physicians (ACCP)
United
States
2007
Bronchioloalveolar lung cancer: ACCP evidence-based clinical
practice guidelines (2nd Ed)
American College of Chest
Physicians (ACCP)
United
States
2007
Chronic cough due to lung tumors: ACCP evidence-based clinical
practice guidelines (2nd Ed)
American College of Chest
Physicians (ACCP)
United
States
2007
Complementary therapies and integrative oncology in lung
American College of Chest
cancer: ACCP evidence-based clinical practice guidelines (2nd Ed) Physicians (ACCP)
United
States
2007
Literature review and national consultation on factors impacting on lung cancer outcomes
Country
Year
| 33
Guidance Material
Organisation
Country
Year
Diagnosis and Management of Lung Cancer: ACCP EvidenceBased Clinical Practice Guidelines (2nd Ed)
American College of Chest
Physicians (ACCP)
United
States
2007
Diagnostic surgical pathology in lung cancer: ACCP evidencebased clinical practice guidelines (2nd Ed)
American College of Chest
Physicians (ACCP)
United
States
2007
Evaluation of patients with pulmonary nodules: when is it lung
cancer?: ACCP evidence-based clinical practice guidelines (2nd
Ed)
American College of Chest
Physicians (ACCP)
United
States
2007
Follow-up and surveillance of the lung cancer patient following
curative-intent therapy: ACCP evidence-based clinical practice
guideline (2nd Ed)
American College of Chest
Physicians (ACCP)
United
States
2007
Initial diagnosis of lung cancer: ACCP evidence-based clinical
practice guidelines (2nd Ed)
American College of Chest
Physicians (ACCP)
United
States
2007
Initial evaluation of the patient with lung cancer: symptoms,
signs, laboratory tests, and paraneoplastic syndromes: ACCP
evidenced-based clinical practice guidelines
American College of Chest
Physicians (ACCP)
United
States
2007
Invasive mediastinal staging of lung cancer: ACCP evidencebased clinical practice guidelines (2nd Ed)
American College of Chest
Physicians (ACCP)
United
States
2007
Lung cancer chemoprevention: ACCP evidence-based clinical
practice guidelines (2nd Ed)
American College of Chest
Physicians (ACCP)
United
States
2007
Management of small cell lung cancer: ACCP evidence-based
clinical practice guidelines (2nd Ed)
American College of Chest
Physicians (ACCP)
United
States
2007
Palliative care consultation, quality-of-life measurements, and
bereavement for end-of-life care in patients with lung cancer:
ACCP evidence-based clinical practice guidelines (2nd Ed)
American College of Chest
Physicians (ACCP)
United
States
2007
Palliative Care in Lung Cancer
American College of Chest
Physicians (ACCP)
United
States
2007
Screening for lung cancer: ACCP evidence-based clinical practice
guidelines (2nd Ed)
American College of Chest
Physicians (ACCP)
United
States
2007
Special treatment issues in lung cancer: ACCP evidence-based
clinical practice guidelines (2nd Ed)
American College of Chest
Physicians (ACCP)
United
States
2007
The noninvasive staging of non-small cell lung cancer: ACCP
evidenced-based clinical practice guidelines (2nd Ed)
American College of Chest
Physicians (ACCP)
United
States
2007
The physiologic evaluation of patients with lung cancer being
American College of Chest
considered for resectional surgery: ACCP evidenced-based clinical Physicians (ACCP)
practice guidelines (2nd Ed)
United
States
2007
Treatment of non-small cell lung cancer stage I and stage II:
ACCP evidence-based clinical practice guidelines (2nd Ed)
American College of Chest
Physicians (ACCP)
United
States
2007
Treatment of non-small cell lung cancer stage IV: ACCP evidence- American College of Chest
based clinical practice guidelines (2nd Ed)
Physicians (ACCP)
United
States
2007
Treatment of non-small cell lung cancer, stage IIIB: ACCP
evidence-based clinical practice guidelines (2nd Ed)
American College of Chest
Physicians (ACCP)
United
States
2007
Treatment of non-small cell lung cancer-stage IIIA: ACCP
evidence-based clinical practice guidelines (2nd Ed)
American College of Chest
Physicians (ACCP)
United
States
2007
ACR Appropriateness Criteria induction and adjuvant therapy for
N2 non-small cell lung cancer
American College of
Radiology
United
States
2006
ACR Appropriateness Criteria nonsurgical, aggressive therapy for
non-small cell lung cancer
American College of
Radiology
United
States
2006
Literature review and national consultation on factors impacting on lung cancer outcomes
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Guidance Material
Organisation
Country
Year
ACR Appropriateness Criteria postoperative adjuvant therapy in
non-small cell lung cancer
American College of
Radiology
United
States
2006
Literature review and national consultation on factors impacting on lung cancer outcomes
| 35
Appendix 3: Australian Data
In Australia, there are only two census points where cancer data collection is mandatory,
at diagnosis and at death.[1] Minimal data therefore exists on the duration of symptoms
before diagnosis, monitoring of stage at diagnosis, treatment waiting times, quality of life
after treatment, intermediate and long-term toxicities, and effects of new treatments and
technologies.[1]
This review identifies key trends based on the publicly available data from National and
State Reports and Cancer Registries.
In reviewing the lung cancer incidence and mortality rates it is useful to remember the
generally poor survival of lung cancer patients which means that whilst the incidence rate
is generally high prevalence may be significantly lower, and that there may also be a
convergence of the incidence and mortality rates in the data.
Incidence
In 2005 in Australia there were 9,182 new cases of lung cancer diagnosed. This
accounted for 10.2% of all new cancers for males and 7.8% of all cancers for
females.[2]1 After allowing for differences in age, males were twice as likely than females
to be diagnosed with lung cancer and twice as likely to die from it. Lung cancer is ranked
fourth for males and females in cancer incidence and lung cancer was the most common
cause of mortality from cancer in Australia overall and in males and females separately.
A key trend is the changes in rates across gender. Incidence and mortality rates are
declining in males but increasing in females. These trends are represented in Figure A1.
Figure A2, Table A3 and Table A4 demonstrates lung cancer incidence by State and
Territory.
1
Excluding non-melanocytic skin cancer.
Literature review and national consultation on factors impacting on lung cancer outcomes
| 36
Figure A1: Trends in incidence rates for lung, bronchus and trachea (ICD10 C33C34), Australia, 1982-2006
Source: AIHW Australian Cancer Incidence and Mortality (ACIM) books.
Note: Age-standardised to the Australian Standard Population 2001.
Figure A2: Average annual lung cancer incidence by State and Territory, 20012005
Source: Australian Institute of Health and Welfare. Cancer in Australia: an overview, 2008. Canberra:
Australian Institute of Health and Welfare, 2007[2] using data from National Cancer Statistics Clearing House,
AIHW.
Table A3: Average annual incidence of lung cancer, 2001-2005 (Lung, bronchus
& trachea (ICD-10 C33-C34))
State
NSW
Vic
Qld
WA
SA
Tas
ACT
NT Aust
Males
1858
1382
1085
537
473
169
50
37 5591
Females
1055
798
581
303
275
102
32
16 3161
Persons
2913
2180
1667
840
748
271
81
53 8752
Literature review and national consultation on factors impacting on lung cancer outcomes
| 37
Source: Australian Institute of Health and Welfare. Cancer in Australia: an overview, 2008. Canberra:
Australian Institute of Health and Welfare, 2007[2] using data from National Cancer Statistics Clearing House,
AIHW.
ICD10 International Classification of Diseases, 10th Edition. C33-34 classification for malignant neoplasms, of
trachea, bronchus and lung.
Table A4: Age standardised lung cancer incidence rates (Lung, bronchus &
trachea (ICD-10 C33-C34)).
State
NSW
Vic
Qld
WA
SA
Tas
ACT
NT Aust
Males
58.5
60.1
62.9
64.9
59.6
69.8
44.1
74.2 60.6
Females
28.1
28.5
29.8
31.0
28.6
35.7
22.4
31.2 28.9
Persons
41.6
42.4
45.0
46.1
42.0
50.5
31.8
53.6 43.0
Source: Australian Institute of Health and Welfare. Cancer in Australia: an overview, 2008. Canberra:
Australian Institute of Health and Welfare, 2007[2] using data from National Cancer Statistics Clearing House,
AIHW.
ICD10 International Classification of Diseases, 10th Edition. C33-34 classification for malignant neoplasms, of
trachea, bronchus and lung.
Mortality
Of the 7,427 lung cancer deaths in Australia in 2005, 63.4% were males and 36.5% were
females.[2] Lung cancer deaths accounted for 21.4% of all male cancer deaths and 15.9
per cent of all female cancer deaths in 2005,2 in addition lung cancer was the leading
cancer death for both sexes.[2] Clear gender differences exist within lung cancer
mortality. Mortality rates are consistently higher for males than females, except for
females 40-44 years who have a higher rate than males in the same age group.[3]
Figure A5 and Table A6 represent the improvements in mortality rates amongst men;
however this has not been seen within the female population.
Figure A5: Trends in death rates for lung, bronchus and trachea (ICD10 C33C34), Australia, 1968-2007
Source: AIHW Australian Cancer Incidence and Mortality (ACIM) books.
Note: Age-standardised to the Australian Standard Population 2001.
2
Excluding non-melanocytic skin cancer.
Literature review and national consultation on factors impacting on lung cancer outcomes
| 38
Table A6: Aged standardised mortality rate (Lung, bronchus & trachea (ICD-10
C33-C34))
Group
1996
1998
2000
2002
2004
2006
Males
63.4
59.3
54.7
53.3
50.3
47.4
Females
22.1
20.7
22.2
23.5
22.2
22.7
Persons
40.0
37.5
36.4
36.6
34.6
36.6
Source: AIHW. GRIM (General Record of Incidence and Mortality): Lung Cancer (ICD-10 C33, 34). Canberra:
AIHW, 2008[4]
ICD10 International Classification of Diseases, 10th Edition. C33-34 classification for malignant neoplasms, of
trachea, bronchus and lung.
Survival
In 1998-2004 lung cancer was one of the cancers with the lowest five-year relative
survival at a level of only 12%.[5]3 As indicated in Table A7 five-year survival was higher
for females than males.[5]
Table A7: Trends in 5 year survival, diagnoses 1982-1986 to 1998-2004, (Lung,
bronchus & trachea (ICD-10 C33-C34))
Group
1982-1986(%)
1987-1991(%)
1992-1997(%)
1998-2004 (%)
Men
7.9
9.1
9.7
10.7
Women
10.5
10.8
12.6
14.0
Persons
8.5
9.5
10.6
11.8
Source: Australian Institute of Health and Welfare, Cancer Australia and Australasian Association of Cancer
Registries. Cancer Survival and Prevalence in Australia: Cancers diagnosed 1982-2004. Cancer Series, 2008[5]
ICD10 International Classification of Diseases, 10th Edition. C33-34 classification for malignant neoplasms, of
trachea, bronchus and lung.
Five-year relative survival from lung cancers diagnosed in 1997-2004 was higher for
persons in major cities (12.4%) compared with inner regional areas (11.3%), outer
regional areas (8.7%) and remove/very remote areas (9.9%).[5] Not surprisingly the
same pattern is seen for one year relative survival over the same period; major cities
(36.5%), inner regional areas (34.2%), outer regional areas (31.2%) and remove/very
remote areas (27.6%).[5] Lung cancer survival can also be affected by socioeconomic
status, five-year relative survival from lung cancers diagnosed in 2000-2004 were
significantly higher for persons living in areas belonging to the least disadvantaged
socioeconomic status quintile (14% in the fifth quintile) compared with the three most
disadvantaged quintiles (11% in the first, second and third quintiles).[5] The first quintile
corresponds to areas with the lowest socioeconomic status and the fifth quintile
corresponds to the highest.
Stage at diagnosis
There is little publicly available information on the stage of lung cancer at diagnosis. Of
those diagnosed with lung cancer in NSW 44% (1,128 people) had localised lung cancer
3
Excluding non-melanocytic skin cancer.
Literature review and national consultation on factors impacting on lung cancer outcomes
| 39
at diagnosis, 23% (592 people) had regional spread at diagnosis, 12% (322 people) had
distant metastases and 21% (520 people) had unknown spread at diagnosis.[6]
Lung cancer in the States and Territories
Similar lung cancer trends are witnessed within all jurisdictions. Lung cancer is the
leading cause of cancer mortality within all states with incidence and mortality rates
higher within the male population.[3,7-12] However in the ACT and South Australia lung
cancer is the second most common cancer death (following breast cancer) amongst
women.[13-15] All states have also experienced a decrease in incidence and mortality
rates amongst men, however an increase or little movement amongst women.[3,711,13,15,16]
Literature review and national consultation on factors impacting on lung cancer outcomes
| 40
Appendix 4: Survey 1 and Survey 2
Lung Cancer in Australia: your chance to influence policy
and a research agenda
1. Thank you for participating in Cancer Australia's Lung Cancer
Survey
This survey seeks your opinions as to the factors impacting on the timely diagnosis and
effective treatment of lung cancer in Australia. This project is being undertaken by Curtin
University, funded by Cancer Australia. The information obtained from this process will
inform future policies and initiatives
You are being invited to participate because of your recognised expertise in either policy,
clinical practice, research or consumer issues Following this survey key recommendations
will be made and we will ask you again for your views and opinions.
Your participation will enable us to make recommendations for lung cancer diagnosis and
treatment, and develop appropriate responses to the challenge of delayed cancer
diagnosis and or treatment.
* 1. Participant Consent Statement
Ethics approval no. RD07-10
I am making a decision to voluntarily participate in the research project named
above. By ticking the box below I indicate that I have read and understood the
'Participant Information Sheet' provided.
I understand that:
1.
Participation involves completing an on-line questionnaire which will take
approximately 10-15 minutes to complete
2.
I can withdraw from the study at any time by contacting
Professor Moyez Jiwa on [email protected]
My withdrawal will not in any way effect my relationship with the
Investigators, Curtin University and Cancer Australia.
3.
If you have any concerns about the way in which this research is being
conducted, you may contact the Manager, Research Ethics at Curtin
University of Technology on (08)92662784 quoting Curtin University of
Technology Ethics Approval Number RD07-10.
4.
The research study is strictly confidential and no information about me
will be used in any way that reveals my identity
I agree to participate in this study
Literature review and national consultation on factors impacting on lung cancer outcomes
| 41
2. Some information about you
1. Please mark the professional description for your role

consumer

policy/management

research

general practitioner

palliative care physician

respiratory physician

general physician

general radiologist

thoracic surgical registrar

medical oncologist

radiation oncologist

general surgeon

thoracic surgeon

cardiothoracic surgeon

advanced trainee respiratory medicine

advanced trainee medical oncologist

advanced trainee general physician

advanced trainee radiation oncology

advanced trainee general surgery

advanced trainee cardiothoracic surgery

advanced trainee palliative care

advanced trainee general practice

registered nurse (hospital)

registered nurse (general practice)

social worker
Literature review and national consultation on factors impacting on lung cancer outcomes
| 42

dietitian

radiation therapist

occupational therapist

psychologist

care coordinator

Other (please specify)
2. In which state or territory do you work principally?

Australian Capital Territory

New South Wales

Northern Territory

Queensland

South Australia

Tasmania

Victoria

Western Australia
3. What is the postcode of the facility in which you work principally?
4. In what sector do you work primarily?

Public practice

Private practice

Private hospital

Public hospital
Other (please specify)
5. Do you provide services in an outreach clinic from a metropolitan service?

Yes

No
Literature review and national consultation on factors impacting on lung cancer outcomes
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3. Awareness and emphasis on lung cancer in Australia
This section seeks your views on the awareness of lung cancer management in Australia
and the visibility in the policy and research agenda. The anchor points for these
questions are 1 to 10. One (1) denotes a low level while 10 is a very high level.
1. Please rate your opinion on the following statements. There is also a section
provide comments relating to this item.
Statement
1
very
low
2
3
4
5
avera
ge
6
7
8
9
10
very
high
The probability with
which lung cancer
appears as a
possible diagnosis
for symptomatic
patients
—
—
—
—
—
—
—
—
—
—
Ability to obtain
access to evidence
based guidelines
and resources to
diagnose, manage
and treat lung
cancer
—
—
—
—
—
—
—
—
—
—
Ability to access
expert opinion to
help me manage
patients with lung
cancer
—
—
—
—
—
—
—
—
—
—
Ability to have
access to
multidisciplinary
teams to assist in
planning far lung
cancer management
—
—
—
—
—
—
—
—
—
—
Please feel free to provide comments relating to these questions
4. Investigation for lung cancer
This section seeks your views on the barriers to investigating an actual or potential
diagnosis of lung cancer and the staging of disease in Australia
1. Please provide your view on the level to which you are able to obtain access
to diagnostic investigation and tests in your practice setting. You may not be
directly responsible for ordering these tests but the level of access will impact
on your capacity to manage lung cancer.
Tests
chest X-Ray
1 (low
level
of
access
)
2
3
4
5
s
7
3
9
10
(very
high
level
of
acces
s)
N/A
—
—
—
—
—
—
—
—
—
—
—
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Tests
1 (low
level
of
access
)
2
3
4
5
s
7
3
9
10
(very
high
level
of
acces
s)
N/A
computerised axial
tomography
—
—
—
—
—
—
—
—
—
—
—
positron emission
tomography (PET)
—
—
—
—
—
—
—
—
—
—
—
biomarkers such as
epidermal growth
factor receptor
(EGFR)
—
—
—
—
—
—
—
—
—
—
—
bronchoscopy and
lung biopsy
—
—
—
—
—
—
—
—
—
—
—
ultrasound guided
lung biopsy
—
—
—
—
—
—
—
—
—
—
—
cytology analysis
—
—
—
—
—
—
—
—
—
—
—
Please provide any comments relating to access to diagnostic tests
2. What is the average waiting time to access these services/personnel in your
practice setting?
Tests
not
available
less than 1
week
2 to 3
weeks
3 to 4
weeks
5 to 6
weeks
more than
6 weeks
chest X-Ray
—
—
—
—
—
—
multidisciplinary
care team
—
—
—
—
—
—
computerised axial
tormography
—
—
—
—
—
—
positron emission
tomography (PET)
—
—
—
—
—
—
biomarkers such as
epidermal growth
factor receptor
(EGFR)
—
—
—
—
—
—
bronchoscopy and
lung biopsy
—
—
—
—
—
—
ultrasound guided
lung biopsy
—
—
—
—
—
—
cytology analysis
—
—
—
—
—
—
thoracic surgeon
—
—
—
—
—
—
medical oncologist
—
—
—
—
—
—
radiotherapist
—
—
—
—
—
—
respiratory physician
—
—
—
—
—
—
Literature review and national consultation on factors impacting on lung cancer outcomes
| 45
Please feel free to provide additional comments regarding waiting times
5. Referral for investigation, diagnosis and management of lung
cancer
This section seeks your views on the issues impacting on the referral for the diagnosis
and management of lung cancer in Australia
1. Over the next seven statement we are interested in identifying your level of
agreement with a series of statements. Each statement will be marked 1 to 10.
One (1) denotes that you strongly disagree with the statement while 10 shows
that you strongly agree with the statement.
Statement
1
stron
gly
disag
ree
2
3
4
5
6
7
8
9
10
stron
gly
agree
There are clear
guidelines for
diagnosis and
management of
lung cancer in
general practice
—
—
—
—
—
—
—
—
—
—
There are clear
guidelines for
diagnosis and
management of
lung cancer in the
oncology setting
—
—
—
—
—
—
—
—
—
—
In my clinical
setting there is
access to a
multidisciplinary
care team to decide
treatment options
—
—
—
—
—
—
—
—
—
—
Patients are
reluctant to proceed
with lung cancer
treatment because
of the fear of the
side effects of
treatment
—
—
—
—
—
—
—
—
—
—
Overall the
prognosis for lung
cancer is poor and
this influences my
readiness to refer
and initiate
treatment
—
—
—
—
—
—
—
—
—
—
There is good
access to diagnostic
services in my
practice setting
—
—
—
—
—
—
—
—
—
—
Distance impacts on
my ability to access
services for my
patients
—
—
—
—
—
—
—
—
—
—
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Statement
1
stron
gly
disag
ree
2
3
4
5
6
7
8
9
10
stron
gly
agree
High levels of
comorbidities
among patients
makes it challenging
to manage patients
with lung cancer
—
—
—
—
—
—
—
—
—
—
High levels of
comorbidities make
me less likely to
pursue aggressive
treatment
—
—
—
—
—
—
—
—
—
—
Please provide any comments relating to investigation, diagnosis and management of
lung cancer
6. Treatment and management of lung cancer
This section seeks your views on factors influencing lung cancer treatment and
management in Australia
1. We are interested in identifying your level of agreement with a series of
statements. Each statement will be marked 1 to 10. One (1) denotes that you
strongly disagree with the statement while 10 shows that you strongly agree
with the statement.
Statement
1
stron
gly
disag
ree
2
3
4
5
6
7
8
9
10
stron
gly
agree
I have ready access
to radiotherapy
services
—
—
—
—
—
—
—
—
—
—
I have ready access
to expert thoracic
surgical services
—
—
—
—
—
—
—
—
—
—
I have ready access
to chemotherapy
services
—
—
—
—
—
—
—
—
—
—
I have ready access
to allied health
services, such as
dietitians and
occupational
therapists
—
—
—
—
—
—
—
—
—
—
I have ready access
to a
multidisciplinary
team to assist with
managing my
patients
—
—
—
—
—
—
—
—
—
—
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Statement
1
stron
gly
disag
ree
2
3
4
5
6
7
8
9
10
stron
gly
agree
I have ready access
to psychological
services to assist
with patient and
family management
—
—
—
—
—
—
—
—
—
—
I have ready access
to transport
services for my
patients
—
—
—
—
—
—
—
—
—
—
I have ready access
to residential
services for my
patients when they
have to travel for
treatment
—
—
—
—
—
—
—
—
—
—
Please feel free to make comments relating to the statements above
7. Outcomes of lung cancer in Australia
This section seeks your views on factors impacting on the outcomes of lung cancer
management in Australia
1. Over the next series of questions we are interested in identifying your level of
agreement with a series of statements. Each statement will be marked 1 to 10.
One (1) denotes that you strongly disagree with the statement while 10 shows
that you strongly agree with the statement.
Statement
1
stron
gly
disag
ree
2
3
4
5
6
7
8
9
10
stron
gly
agree
In my practice there
are clear protocols
for the management
of symptomatic
patients with
normal chest X-rays
—
—
—
—
—
—
—
—
—
—
In my clinical
practice setting
there are clinical
guidelines for
screening, diagnosis
and management of
lung cancer
—
—
—
—
—
—
—
—
—
—
Health care
professionals have a
bleak view of the
prognosis of lung
cancer and are
reticent to refer for
definitive treatment
—
—
—
—
—
—
—
—
—
—
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Statement
1
stron
gly
disag
ree
2
3
4
5
6
7
8
9
10
stron
gly
agree
Lack of coordination
of care impacts on
the diagnosis and
referral for the
management of
lung cancer
—
—
—
—
—
—
—
—
—
—
Waiting times for
tests such as PET
scans influence the
timely access to
treatment
—
—
—
—
—
—
—
—
—
—
Travelling to tertiary
centres for
treatment
influences patients
and their families
motivations to
access treatment
—
—
—
—
—
—
—
—
—
—
Multi disciplinary
care teams are
integral to
improving lung
cancer care
—
—
—
—
—
—
—
—
—
—
The stigma
associated with lung
cancer impacts on
individuals'
motivation to access
services and
treatments
—
—
—
—
—
—
—
—
—
—
Many health
professionals fail to
appreciate the need
for urgent referral
and management of
lung cancer
—
—
—
—
—
—
—
—
—
—
The coordination of
lung cancer services
in my setting is
adequate to provide
timely, evidence
based therapies
—
—
—
—
—
—
—
—
—
—
lack of coordination
across multiple
providers adds to
unnecessary delays
in
—
—
—
—
—
—
—
—
—
—
There is limited
expertise for the
management of
lung cancer in my
clinical practice
setting
—
—
—
—
—
—
—
—
—
—
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| 49
Statement
1
stron
gly
disag
ree
2
3
4
5
6
7
8
9
10
stron
gly
agree
There is adequate
resources in my
clinical practice
setting to provide
care according to
clinical guidelines
and treatment
recommendations
—
—
—
—
—
—
—
—
—
—
1 am readily able to
access data to allow
me to monitor
clinical outcomes for
patients with lung
cancer
—
—
—
—
—
—
—
—
—
—
In my clinical
practice setting we
routinely review
lung cancer cases to
critically discuss and
evaluate
management
—
—
—
—
—
—
—
—
—
—
Please feel free to make additional comments relating to factors impacting on lung cancer
outcomes
2. Please list three factors that would improve lung cancer management in
Australia.
8. Thank you
Thank you for taking the time to do this survey - if you would like to provide more
information please email Sarah McGrath on [email protected] who will organise
an interview time.
Literature review and national consultation on factors impacting on lung cancer outcomes
| 50
Cancer Australia
1. Thank you for participating in Cancer Australia's Lung Cancer
Second Survey
WELCOME TO CANCER AUSTRALIA'S SECOND SURVEY
You may recognise items from the previous survey. This survey is designed to achieve
consensus on issues that may impact on diagnosis and treatment of lung cancer
This research has been commissioned by Cancer Australia and is being undertaken by
Curtin University of Technology.
The primary aim of this research is to identify where variations in practice occur and how
they can be best addressed by the development of clinical guidance material. A
secondary aim of this study is that it may inform policy in the future.
You are being invited to participate because of your experience in either clinical practice,
research, policy or consumer issues.
Your participation will enable us to make recommendations for lung cancer diagnosis and
treatment, and develop appropriate responses to the challenge of delayed lung cancer
diagnosis and/or treatment.
* 1. Ethics approval no. RD07-10
I am making a decision to voluntarily participate in the research project named
above. By ticking the box below, I indicate that I have read and understood the
'Participant Information Sheet' provided.
I understand that:
1.
Participation involves completing an on-line questionnaire which will take
approximately 10-15 minutes to complete.
2.
I can withdraw from the study at any time by contacting
Professor Moyez Jiwa on [email protected]
My withdrawal will not in any way effect my relationship with the
Investigators, Curtin University or Cancer Australia.
3.
If I have any concerns about the way in which this research is being
conducted, I may contact the Manager, Research Ethics at Curtin
University of Technology on (08) 92662784 quoting the Curtin University
of Technology Ethics Approval Number. RD07-10.
4.
The research study is strictly confidential and no information about me
will be used in any way that reveals my identity.
I agree to participate in this study
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| 51
2. Some information about you
1. Please mark the capacity/position in which you are answering questions in
this survey

Aboriginal Health Worker

advanced trainee cardiothoracic surgery

advanced trainee general physician

advanced trainee general practice

advanced trainee general surgery

advanced trainee medical oncologist

advanced trainee palliative care

advanced trainee radiation oncology

advanced trainee respiratory medicine

cardiothoracic surgeon

care coordinator

consumer

dietitian

general physician

general practitioner

general radiologist

general surgeon

medical oncologist

occupational therapist

palliative care physician

pharmacist

physiotherapist

policy/management officer

psychologist

radiation oncologist
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
radiation therapist

registered nurse (general practice)

registered nurse (hospital)

researcher

respiratory physician

social worker

thoracic surgeon

thoracic surgical registrar

Other (please specify)
2. In which state or territory do you work principally?

Australian Capital Territory

New South Wales

Northern Territory

Queensland

South Australia

Tasmania

Victoria

Western Australia
3. What is the postcode of the facility in which you work/represent principally?
4. If you do not want to provide your postcode, would you classify the region in
which you work/represent as?

metropolitan

regional

rural

remote
5. In what sector do you work primarily?

Public practice

Private practice
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
Private hospital

Public hospital

Academic/Research setting

Policy

Not Applicable
3. Improving diagnosis of lung cancer
Obtaining a timely diagnosis is important in maximising the outcomes for individuals
diagnosed with lung cancer.
Based on the results from our first survey and consultations, early diagnosis has been
recognised as a priority in lung cancer management. These results have identified that
potential variations may exist in diagnostic and staging processes.
Therefore, the questions below seek to provide us with further information regarding
variation in diagnosis and staging
1. Do you perceive VARIATIONS for diagnostic/staging practices in the clinical
area in which you work or represent?

Yes

No
Comment
2. In your practice setting in which you work or represent, do you observe
DELAYS in diagnosis/staging of lung cancer?

Yes

No
Comment
3. Please provide your view on the following statement.
Variations in the evidence based use of diagnostic and staging investigations of
lung cancer contributes to variations in outcomes.

Strongly disagree

Disagree

Somewhat agree

Agree

Strongly Agree
Literature review and national consultation on factors impacting on lung cancer outcomes
| 54
Please feel free to elaborate on your view
4. Improving diagnosis of lung cancer
1. Please indicate your level of agreement with the influence of the following
factors on the accurate and timely DIAGNOSIS of lung cancer.
Factor
1
stron
gly
disag
ree
2
3
4
5
6
7
8
9
10
stron
gly
agree
Patient's delay in
seeking treatment
for symptoms
—
—
—
—
—
—
—
—
—
—
Patient's reluctance
to have diagnostic
tests
—
—
—
—
—
—
—
—
—
—
Lack of recognition
by health
professionals of the
potential of a
diagnosis of lung
cancer
—
—
—
—
—
—
—
—
—
—
A perception of the
futility of treatment
by health
professionals
—
—
—
—
—
—
—
—
—
—
A perception of the
futility of treatment
by patients
—
—
—
—
—
—
—
—
—
—
Lack of access to
guidelines and
resources to assist
in choosing
diagnostic tests for
lung cancer and
—
—
—
—
—
—
—
—
—
—
pathways to access
specialist care
—
—
—
—
—
—
—
—
—
—
Failure to monitor
and follow-up
people at risk of
lung cancer who
have ongoing
symptoms but nonspecific changes on
chest-X Rays
—
—
—
—
—
—
—
—
—
—
Long distances to
travel to obtain
specialist services
—
—
—
—
—
—
—
—
—
—
Delays in making
decisions about
treatment
—
—
—
—
—
—
—
—
—
—
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| 55
Factor
1
stron
gly
disag
ree
2
3
4
5
6
7
8
9
10
stron
gly
agree
Inability to access a
multidisciplinary
team to assess
tumour location,
stage and
resectability
—
—
—
—
—
—
—
—
—
—
Patient
comorbidities
influence the
decision to
undertake
diagnostic tests
—
—
—
—
—
—
—
—
—
—
Other (please specify)
5. Improving diagnosis of lung cancer
* 1. Is there variation in APPROPRIATE and TIMELY REFERRAL for diagnostic
and staging investigations in your area of experience?

Yes

No
Comments
6. Improving diagnosis of lung cancer
1. Do you think these variations in APPROPRIATE and TIMELY REFERRAL
contribute to variations in outcomes?

Yes

No
Please feel free to provide comments
7. Improving diagnosis of lung cancer
1. In your opinion will the following initiatives improve the timely DIAGNOSIS
and STAGING of lung cancer and improve outcomes?
Initiatives
Updated clinical
practice guidelines
1
stron
gly
disag
ree
2
3
4
5
6
7
8
9
10
stron
gly
agree
—
—
—
—
—
—
—
—
—
—
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Initiatives
1
stron
gly
disag
ree
2
3
4
5
6
7
8
9
10
stron
gly
agree
Targeted
education/awarenes
s programs for
patients
—
—
—
—
—
—
—
—
—
—
Targeted education
programs/awarenes
s for health
professionals
—
—
—
—
—
—
—
—
—
—
Improved access to
multidisciplinary
teams
—
—
—
—
—
—
—
—
—
—
Greater access to
specialist lung
cancer networks
—
—
—
—
—
—
—
—
—
—
A list of available
personnel,
diagnostic services
in my local area
—
—
—
—
—
—
—
—
—
—
Information
regarding
prognosis, risk
assessment and
suitability for
surgery
—
—
—
—
—
—
—
—
—
—
Information for
patients and their
family regarding
diagnostic
procedures
—
—
—
—
—
—
—
—
—
—
Please provide additional potential solutions
2. If clinical guidance material were to be developed to reduce variation in
DIAGNOSTIC and STAGING of lung cancer, where would this information be
best targeted? Multiple responses are possible.

anaesthetists

cardiothoracic surgeons

consumer material

general physicians

general practitioners

medical oncologists

nursing and allied health
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
palliative care physicians

radiation oncologists

radiologists

respiratory physicians

thoracic surgeons
Please suggest other target audiences.
8. Health professionals at the time of diagnosis
1. At the time of DIAGNOSIS and STAGING in your experience do you access a
multidisciplinary team of specialists, for example radiologist, surgeon,
radiotherapist and oncologist?

Yes

No

This question does not apply to me.
2. Do you consider that the following health professionals should be part of the
multidisciplinary team at the time of DIAGNOSIS?
Health professionals
Yes
No
care coordinator/lung cancer nurse
—
—
general practitioner
—
—
medical oncologist
—
—
palliative care physician
—
—
radiation oncologist
—
—
respiratory physician
—
—
surgeon
—
—
Other (please specify)
9. Health professionals at the time of diagnosis
* 1. In your practice setting/experience do you witness VARIATIONS in ACCESS
to multidisciplinary teams?

Yes

No
Comments
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| 58
10. Health professionals at the time of diagnosis
1. What are some of the reasons for this variation in access to a
multidisciplinary team at the time of DIAGNOSIS? (multiple responses are
possible)

I am not convinced of the benefit of a multidisciplinary team

The incentive to participate in a multidisciplinary team is not sufficient

There is no multidisciplinary team in my area

I am unaware of how to access a multidisciplinary team

The distance to travel limits me accessing a multidisciplinary team

The location of specialists across public and private sectors challenges the conduct
of multidisciplinary team meetings

The time involved limits me participating in a multidisciplinary team
Please provide comments regarding access to a multidisciplinary care team
11. Improving the monitoring of individuals at high risk
Individuals who have ongoing respiratory symptoms and risk factors are at higher risk.
Some of the risk factors for lung cancer are: older age, smoking history, exposure to
asbestos, pulmonary function, and family history. If the patient has symptoms that may
indicate lung cancer please provide responses to the following two questions
1. In your setting do you have clear protocols for the monitoring of patients
with respiratory symptoms who are not diagnosed with lung cancer on initial
presentation?

Yes

No
2. In your opinion, do you think guidance material to monitor patients with a
high risk for lung cancer would be beneficial?

Yes

No
12. Improving the treatment of lung cancer
Our initial survey and consultations has suggested variation in treatment patterns for
lung cancer. We are interested in obtaining your views based upon your experience.
1. From your experience please indicate your level of agreement of the
influence of the following factors on the effective TREATMENT of lung cancer
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Factors
1
stron
gly
disag
ree
2
3
4
5
6
7
8
9
10
stron
gly
agree
A perception of the
futility of treatment
from the
perspective of
patients
—
—
—
—
—
—
—
—
—
—
A perception of the
futility of treatment
from the
perspective of
health professionals
—
—
—
—
—
—
—
—
—
—
Lack of access to
guidelines and
resources for
managing lung
cancer and
pathways to access
specialist care
—
—
—
—
—
—
—
—
—
—
Failure to monitor
and follow-up
people at risk of
lung cancer who
have ongoing
symptoms
—
—
—
—
—
—
—
—
—
—
Delays in surgical
interventions
—
—
—
—
—
—
—
—
—
—
Delays in medical
oncology
interventions
—
—
—
—
—
—
—
—
—
—
Delays in
radiotherapy
interventions
—
—
—
—
—
—
—
—
—
—
Long distances to
travel to obtain
specialist services
—
—
—
—
—
—
—
—
—
—
Inability to access a
multidisciplinary
team to discuss
management
options
—
—
—
—
—
—
—
—
—
—
Reluctance of
patients and their
families to travel to
specialist centres
for treatment
—
—
—
—
—
—
—
—
—
—
Variations in
palliative care
—
—
—
—
—
—
—
—
—
—
Variations in
surgical treatment
—
—
—
—
—
—
—
—
—
—
Variations in
oncological
treatment
—
—
—
—
—
—
—
—
—
—
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Factors
Variations in
radiotherapy
1
stron
gly
disag
ree
2
3
4
5
6
7
8
9
10
stron
gly
agree
—
—
—
—
—
—
—
—
—
—
Please provide other factors impacting or management
2. In your practice setting/experience, do you have access to a multidisciplinary
team for the TREATMENT of lung cancer?

Yes

No
3. To what level do you think the following information should be included in
clinical guidance material. The lower the number on the scale the lower level of
your agreement.
Information
1
stron
gly
disag
ree
2
3
4
5
6
7
8
9
10
stron
gly
agree
Identification of
specific patient
populations at high
risk e.g. patients
with ongoing
symptoms and non
specific test results
—
—
—
—
—
—
—
—
—
—
Strategies for
monitoring patients
with ongoing
symptoms and non
specific test results
—
—
—
—
—
—
—
—
—
—
Information
regarding managing
comorbidities
—
—
—
—
—
—
—
—
—
—
Information in
determining
prognosis
—
—
—
—
—
—
—
—
—
—
Guidance in
determining
suitability for
surgery and
operative risk
—
—
—
—
—
—
—
—
—
—
Evidence based
recommendations
for diagnosis
—
—
—
—
—
—
—
—
—
—
[Evidence based
strategies for
treatment
—
—
—
—
—
—
—
—
—
—
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Information
1
stron
gly
disag
ree
2
3
4
5
6
7
8
9
10
stron
gly
agree
Evidence based
strategies for
palliation
—
—
—
—
—
—
—
—
—
—
Provision of time
window targets for
issues such as time
from diagnosis to
treatment
—
—
—
—
—
—
—
—
—
—
Adjunctive symptom
management
strategies
—
—
—
—
—
—
—
—
—
—
4. If clinical guidance material were to be developed for the TREATMENT of lung
cancer to whom would this information be best targeted? Multiple responses
are possible

general practitioners

respiratory physicians

general physicians

anaesthetists

radiologists

medical oncologists

radiation oncologists

thoracic surgeons

cardiothoracic surgeons

consumers

nursing and allied health professionals
Please suggest other target audiences.
5. Would guidance material around the evidence on the benefit of
multidisciplinary teams in lung cancer TREATMENT be helpful in improving
patient outcomes?

Yes

No
Please provide comments
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13. Improving the treatment of lung cancer
1. In your opinion are difficulties accessing multidisciplinary teams impacting
on outcomes of lung cancer?

Yes

No
2. Do you consider the following health professionals should be part of the
multidisciplinary team to plan and monitor TREATMENT
Health professionals
Yes
No
allied health professionals
—
—
care coordinator/lung cancer
nurse
—
—
general practitioner
—
—
medical oncologist
—
—
palliative care physician
—
—
radiation oncologist
—
—
respiratory physician
—
—
surgeon
—
—
Other (please specify)
14. Improving the treatment of lung cancer
1. What are some of the reasons you do not access a multidisciplinary team for
the TREATMENT of lung cancer? (multiple responses are possible)

I am not convinced of the benefit of a multidisciplinary team

The incentive to participate in a multidisciplinary team is not sufficient

There is no multidisciplinary team in my area

I am unaware of how to access a multidisciplinary team

The distance to travel limits me accessing a multidisciplinary team

The location of specialists across public and private sectors challenges the conduct
of multidisciplinary team meetings

The time involved limits me participating in a multidisciplinary team
Please provide comments regarding access to a multidisciplinary care team
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15. Priority areas for improving lung cancer management in
Australia
This section seeks to identify strategies for reducing the variation in practice.
1. If clinical guidance material were to be developed where do you consider that
this would have the greatest impact? Please rate your answer from 1 to 10,
with 1 suggesting a low impact and 10a high impact.
Impacts
1
stron
gly
disag
ree
2
3
4
5
6
7
8
9
10
stron
gly
agree
Investigations
leading to early
diagnosis
—
—
—
—
—
—
—
—
—
—
Guidelines for the
diagnosis and
staging of lung
cancer
—
—
—
—
—
—
—
—
—
—
Strategies for the
treatment of lung
cancer
—
—
—
—
—
—
—
—
—
—
Guidelines for the
composition of
multidisciplinary
teams at diagnosis
—
—
—
—
—
—
—
—
—
—
Guidelines for the
composition of
multidisciplinary
teams for treatment
—
—
—
—
—
—
—
—
—
—
Outcomes for
measuring the
quality of lung
cancer care
—
—
—
—
—
—
—
—
—
—
2. In your opinion, what factors are likely to have the greatest reduction in
practice variation in lung cancer treatment in Australia?
Strategies to decrease variation in lung cancer treatment

Priority 1:

Priority 2:

Priority 3:

Priority 4:

Priority 5:
Please provide additional recommendations/comments relating to decreasing treatment
variation
Literature review and national consultation on factors impacting on lung cancer outcomes
| 64
16 Thank you
Thank you for taking the time to complete this survey, if you would like to provide more
information, please email Sarah McGrath on [email protected] who will organise
an interview time.
Literature review and national consultation on factors impacting on lung cancer outcomes
| 65
Appendix 5: Consultation Round 1 Results
Section 1: Some information about you
Question 1.1: Please mark the professional description for your role
1.1 Participant Demographics: Professional Description
Frequency
Percent
Academic Nurse—Palliative care
1
0.74
Advanced trainee general practice
1
0.74
Basic trainee GP
1
0.74
Cardiothoracic surgeon
4
2.94
Care coordinator
1
0.74
Clinical nurse consultant respiratory
1
0.74
Consumer
3
2.21
Exercise physiologist
1
0.74
General practitioner
25
18.38
General practitioner registrar
1
0.74
General radiologist
12
8.82
General surgeon
4
2.94
GP psychotherapist
1
0.74
Medical oncologist
14
10.29
Medical oncologist and palliative medicine physician
1
0.74
Nurse consultant
1
0.74
Nurse manager
1
0.74
Occupational therapist
1
0.74
Palliative care physician
7
5.15
Physiotherapist
1
0.74
Physiotherapy
1
0.74
Policy/management
2
1.47
Project co-ordinator
1
0.74
Psychologist
1
0.74
Public health practitioner
1
0.74
Radiation oncologist
12
8.82
Reg nurse counsellor
1
0.74
Registered nurse (general practice)
1
0.74
Registered nurse (hospital)
4
2.94
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1.1 Participant Demographics: Professional Description
Frequency
Percent
Research
4
2.94
Respiratory physician
22
16.18
Thoracic surgeon
3
2.21
Tobacco treatment specialist
1
0.74
Total
136
100.00
Question 1.2: In which state or territory do you work principally?
1.2 Participant Demographics: State
Frequency
Percent
Australian Capital Territory
2
1.5
New South Wales
53
38.7
Northern Territory
1
.7
Queensland
24
17.5
South Australia
9
6.6
Tasmania
5
3.6
Victoria
25
18.2
Western Australia
18
13.1
Total
137
100.0
1.3 Participant Demographics: Primary Work Sector
Frequency
Percent
Community
1
.7
Not answered
1
.7
Other
7
5.1
Primary Health care
1
.7
Private hospital
4
2.9
Private practice
44
32.1
Public and private
1
.7
Public hospital
35
25.5
Public practice
41
29.9
Research
1
.7
Research Institute
1
.7
Total
137
100.0
Question 1.3: In what sector do you work primarily?
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Question 1.4: Do you provide services in an outreach clinic from a metropolitan
service?
1.4 Participant Demographics: Do you provide services in an
Outreach clinic from a metropolitan service?
Frequency
Percent
No
107
78.1
Not answered
2
1.5
Yes
28
20.4
Total
137
100.0
Section 2: Awareness and emphasis on lung cancer in
Australia
Question 2.1: Please rate your opinion on the following
statements.
There is also a section to provide comments relating to this item.
2.1 Statistical results
Factors
Probability of lung
cancer as
diagnosis
Evidence based
Expert opinion
guideline accessability accessability
Multi-disciplinary
team accessability
N - Valid
124
125
124
121
N - Missing
13
12
13
16
Mean
6.57
7.00
8.19
7.67
Median
7.00
8.00
9.00
8.00
Std. Deviation
2.296
2.366
1.910
2.417
Percentiles - 25
5.00
5.00
7.00
6.00
Percentiles - 50
7.00
8.00
9.00
8.00
Percentiles - 75
8.00
9.00
10.00
10.00
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Figure 2.1: Views on improving care
2.1 Open-ended Comments:
1.
Limited by rurality.
2.
Fewer guidelines in general available in Australia compared to practice in UK.
3.
The major problem is the identification rather than getting treatment once found.
4.
This reflects my clinical practice.
5.
Not involved in MultiD teams for lung cancer; don't manage lung cancer directly.
6.
The major problem is the identification rather than getting treatment once found.
7.
Access to multidisciplinary teams can be difficult, especially in the private sector
and in the future may also effect public facilities due to budget cuts.
8.
We work in rehabilitation for respiratory and cancer patients and have referrals for
both research and treatment of symptoms such as pain, dyspnoea and fatigue as
well as muscle wasting. Good support from nutrition and medical staff. All work
together to support the patients.
9.
As a radiologist the last 3 questions appear not relevant.
10.
As a patient, it seems only luck of who your GP may send you to for Respiratory
assistance. There are some Specialists who do not have good contact with MDT
and do not actively push their patients into, fighting for a better Quality of Life, no
matter how long people have to live.
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11.
Have ready access to tertiary referral centre.
12.
In order to access MDT care planning a consumer needs to be aware of the
importance of this approach—I suspect few consumers are aware how critical this
element of care will be to their clinical outcomes.
13.
The problem lies in insufficient resources to diagnose and stage lung cancer,
which impacts on all of the other areas, regardless of expert input and MDT
access.
14.
Regular teleconference with metropolitan centre.
15.
As my focus is lung cancer and I work in a very aware and research given group
my opinions are biased towards a good opinion.
16.
Lung cancer is a rare diagnosis in general practice. I don't have the need to
consult guidelines about it much at all.
17.
I cannot comment as I do not treat lung cancer patients, I am a research
psychologist.
18.
I am answering these questions with the region in which I practise, not generally
in Victoria, or Australia.
19.
While I have access to MDTs at my specialist centre, in smaller hospitals this is an
issue.
20.
We have a local tertiary hospital with good multidisciplinary support.
21.
Currently we have no thoracic surgeon in the public hospital, MDM only starting
this month and with no surgical input.
22.
Timeliness concerns for public patients access.
23.
I do not treat or manage lung cancer patient.
24.
These questions are hard to understand. The main issue is getting access to
timely diagnosis.
25.
I coordinate and chair the weekly thoracic oncology multidisciplinary meetings at
my hospital.
26.
Fewer guidelines in general available in Australia compared to practice in UK.
27.
The major problem is the identification rather than getting treatment once found.
Section 3: Investigation for lung cancer
Question 3.1:
Please provide your view on the level to which you are able to obtain access to diagnostic
investigation and tests in your practice setting. You may not be directly responsible for
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| 70
ordering these tests but the level of access will impact on your capacity to manage Lung
Cancer.
3.1 Statistical results
Factors
Chest
X-ray
Computerise Positron
d axial
Emission
tomography Tomograp
hy (PET)
Biomarkers Bronchonosco Ultrasound Cytolog
(eg.
py / lung
guided
y
Epidermal
biopsy
lung
analysis
Growth
Biopsy
Factor
Receptor—
EGFR)
N - Valid
118
117
111
100
113
110
113
N - Missing
19
20
26
37
24
27
24
Mean
9.78
9.31
6.72
5.54
8.34
7.54
9.01
Median
10.00
10.00
8.00
5.50
9.00
8.00
10.00
Std. Deviation
.629
1.477
2.893
3.112
2.111
2.725
1.639
Percentiles - 25
10.00
9.00
5.00
3.00
7.00
6.00
9.00
Percentiles - 50
10.00
10.00
8.00
5.50
9.00
8.00
10.00
Percentiles - 75
10.00
10.00
9.00
8.00
10.00
10.00
10.00
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Figure 3.1: Availability of diagnostic investigation and testing
3.1 Open-ended Comments:
1.
Lack of direct billing affects patient access.
2.
Access very much depends on the patients ability to travel to services not
available locally.
3.
Working in a large teaching hospital means the data base with all info is available
on line.
4.
Access to EGFR and other newer molecular testing (eg. MET, RAF, k-ras) is a
critical need in the public hospital system.
5.
I work in a teaching hospital with a lung multidisciplinary clinic. The hospital has
just installed anew PET scanner.
6.
These all depend on the Respiratory Specialists willingness to send people for
further investigation.
7.
Bronchoscopy and lung biopsy are limited by access frequency, then all
biopsy/sampling is subject to significant delay in reporting of pathology/cytology
results due to manpower resource insufficiency.
8.
Some delays with biopsy.
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9.
Cost to the patient is a major limitation to access to EGFR. There is no PET
scanner at my hospital and patients travel.
10.
Pet avail but slow.
11.
Access to bronchoscopy (10) and CT biopsy are different and access very
different. We rarely do US biopsy in the lung setting.
12.
Excellent access to tests available in the community. Very good access to the
others through private specialists, quite reasonable access to the rest through the
public system.
13.
I rarely work up patients for a new diagnosis so these answers relate to the
workup received by patients prior to referral for palliative care.
14.
CT scans have a long wait—2 months; once a lesion is found, there may be a
months wait for bronchoscopy and then the same for biopsy.
15.
Access to EBUS in public system is very limited.
16.
CT guided biopsy much more common than Ultrasound guided biopsy.
17.
No PET scan, we refer patients to Sydney, biomarkers only if paid for by the
company.
18.
Never heard of EGFR.
19.
I rely on specialists to arrange pet, egfr etc, presumably all Brisbane based, not in
our region anyway.
20.
Access to biomarkers is difficult due to costs associated with testing not
availability of test.
21.
I can get PET access but the delay and barriers are excessive.
22.
There is only one PET scanner available in the state.
Question 3.2: What is the average waiting time to access these
Services / Personnel in your practice setting?
Bronchoscopy and lung biopsy
Average Services Waiting Times:
Frequency
Percent
< 1 week
29
21.2
2 to 3 weeks
39
28.5
3 to 4 weeks
13
9.5
5 to 6 weeks
4
2.9
> 6 weeks
1
.7
Not answered
51
37.2
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Average Services Waiting Times:
Frequency
Percent
Total
137
100.0
Average Services Waiting Times:
Frequency
Percent
< 1 week
70
51.1
2 to 3 weeks
15
10.9
3 to 4 weeks
2
1.5
5 to 6 weeks
2
1.5
> 6 weeks
2
1.5
Not answered
46
33.6
Total
137
100.0
Average Services Waiting Times:
Frequency
Percent
< 1 week
32
23.4
2 to 3 weeks
33
24.1
3 to 4 weeks
12
8.8
5 to 6 weeks
3
2.2
Not answered
48
35.0
Not available
9
6.6
Total
137
100.0
Average Services Waiting Times:
Frequency
Percent
< 1 week
12
8.8
2 to 3 weeks
25
18.2
3 to 4 weeks
15
10.9
5 to 6 weeks
2
1.5
> 6 weeks
5
3.6
Not answered
53
38.7
Not available
25
18.2
Total
137
100.0
Computerised axial (CT)
Ultrasound guided lung biopsy
Biomarker testing (eg. EGFR)
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Cytology analysis
Average Services Waiting Times:
Frequency
Percent
< 1 week
65
47.4
2 to 3 weeks
17
12.4
3 to 4 weeks
4
2.9
5 to 6 weeks
2
1.5
> 6 weeks
1
.7
Not answered
47
34.3
Not available
1
.7
Total
137
100.0
Positron Emission Tomography (PET)
Average Services Waiting Times:
Frequency
Percent
< 1 week
15
10.9
2 to 3 weeks
42
30.7
3 to 4 weeks
16
11.7
5 to 6 weeks
3
2.2
> 6 weeks
2
1.5
Not answered
48
35.0
Not available
11
8.0
Total
137
100.0
Average Services Waiting Times:
Frequency
Percent
< 1 week
99
72.3
2 to 3 weeks
1
.7
5 to 6 weeks
1
.7
Not answered
36
26.3
Total
137
100.0
Average Personnel Waiting Times:
Frequency
Percent
< 1 week
43
31.4
2 to 3 weeks
31
22.6
3 to 4 weeks
6
4.4
Chest X-ray
Multi disciplinary care team
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Average Personnel Waiting Times:
Frequency
Percent
5 to 6 weeks
1
.7
> 6 weeks
2
1.5
Not answered
51
37.2
Not available
3
2.2
Total
137
100.0
Average Personnel Waiting Times:
Frequency
Percent
< 1 week
28
20.4
2 to 3 weeks
37
27.0
3 to 4 weeks
14
10.2
5 to 6 weeks
3
2.2
> 6 weeks
3
2.2
Not answered
50
36.5
Not available
2
1.5
Total
137
100.0
Average Personnel Waiting Times:
Frequency
Percent
< 1 week
43
31.4
2 to 3 weeks
30
21.9
3 to 4 weeks
9
6.6
5 to 6 weeks
6
4.4
> 6 weeks
4
2.9
Not answered
44
32.1
Not available
1
.7
Total
137
100.0
Average Personnel Waiting Times:
Frequency
Percent
< 1 week
38
27.7
2 to 3 weeks
24
17.5
3 to 4 weeks
15
10.9
5 to 6 weeks
5
3.6
Thoracic surgeon
Respiratory physician
Medical oncologist
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Average Personnel Waiting Times:
Frequency
Percent
> 6 weeks
3
2.2
Not answered
52
38.0
Total
137
100.0
Average Personnel Waiting Times:
Frequency
Percent
< 1 week
31
22.6
2 to 3 weeks
32
23.4
3 to 4 weeks
13
9.5
5 to 6 weeks
8
5.8
> 6 weeks
4
2.9
Not answered
49
35.8
Total
137
100.0
Radiotherapist
3.2 Open-ended Comments:
1.
I am a radiologist, so don't refer patients on.
2.
This access is facilitated by the weekly lung multidisciplinary clinic and the
telephone.
3.
When I was diagnosed I was able to get access to all these tests, except PET, but
the specialist I went to first, thought the Lump was not dangerous, I was 49, a
non-smoker and quite healthy, so we will wait 3 months then have another scan,
then another 3 months, I got a second opinion, the LUMP was cancerous, I had
Lung Cancer and he got it wrong. As you can see, I know people slip through the
cracks.
4.
Would not usually directly access PET and EGFR other than via specialist.
5.
Option of 1-2 weeks not given!
6.
The wait for lung biopsy is not as long as for bronchoscopy.
7.
No 1-2 weeks and see above re biopsy.
8.
All services/personnel left blank have a waiting time of 1-2 weeks.
9.
I am not sure if we have a multidisciplinary care team apart from Pall Care;
medical oncologist visits from Adelaide monthly and radiotherapy has just opened
so I don't know.
10.
These time frames are times to see the specialist but not times to start treatment
(surgical and Radiation Onc).
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11.
Don't know time for egfr, ct at Royal Adelaide > 3mths so I'd get it offsite in
week.
12.
All others less than 1 week.
13.
These are private wt times, turn weeks to months for public wait times.
14.
Computer doesn't permit similar answers to consecutive questions.
Section 4: Referral for investigation, diagnosis and
management
Question 4.1: Identify your level of agreement with the following 7
statements.
Table 4.1: Statistical results
Factors
Clear
guideline
s in
general
practice
Clear
guidelin
es in
oncolog
y
MultiPatient Poor
Good
Distanc
disciplinar relucta prognosi access to e
y team
nce
s
diagnosti impact
access
influenci c services s
ng
in
access
likelihoo practice
to
d of
service
referral
s
High
comorbidi
ty =
challengin
g patient
managem
ent
High
comorbi
dity =
less
aggressi
ve
treatme
nt
N - Valid
110
110
110
110
110
113
110
110
109
N - Missing
27
27
27
27
27
24
27
27
28
Mean
5.48
7.24
7.68
4.89
3.35
8.00
4.23
7.30
5.40
Median
5.00
8.00
8.00
5.00
2.00
9.00
3.00
8.00
5.00
Std. Deviation
2.411
2.133
2.411
2.432
2.360
2.151
3.085
2.101
2.763
Percentiles - 25
4.00
6.00
6.00
3.00
1.00
7.00
2.00
6.00
3.00
Percentiles - 50
5.00
8.00
8.00
5.00
2.00
9.00
3.00
8.00
5.00
Percentiles - 75
7.00
9.00
10.00
7.00
5.00
10.00
7.25
9.00
8.00
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Figure 4.1: Diagnosis, management and treatment
4.1 Open-ended Comments:
1.
Some questions not applicable to my area of practice.
2.
I have had Diabetes for 30+ years, it is not always the boxes you have to tick, to
make people fit. Sometimes it is talking to the person in front of you and seeing
how much they want to fight.
3.
This question needs an "I don't know" response option.
4.
Treatment/management is a patient decision, on advice from the care team, not
mine to decide aggressive or palliative etc.
5.
I do not manage lung cancer patients.
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Section 5: Treatment and management of lung cancer
Question 5.1: What factors influence Lung Cancer treatment and
management in Australia?
Table 5.1: Statistical results
Factors
Radiologis Thoracic Chemother Allied
t
aurgeon apy
health
services
MultiPsychologi Transport Residenti
disciplina st
al
ry team
services
N - Valid
110
110
109
108
107
109
108
104
N - Missing
27
27
28
29
30
28
29
33
Mean
7.77
7.65
8.15
7.44
7.79
6.34
5.30
4.60
Median
9.00
9.00
9.00
8.00
9.00
7.00
5.00
4.00
Std. Deviation
2.558
2.694
2.360
2.470
2.448
2.816
2.829
2.660
Percentiles - 25
6.00
6.00
7.00
6.00
7.00
4.00
3.00
2.00
Percentiles - 50
9.00
9.00
9.00
8.00
9.00
7.00
5.00
4.00
Percentiles - 75
10.00
10.00
10.00
10.00
10.00
9.00
7.75
7.00
Figure 5.1: Accessibility to specialists / services
5.1 Open-ended Comments:
1.
Public versus private affects access.
2.
This is from my metropolitan palliative care practice viewpoint.
3.
I would add physiotherapy here based on the evidence of the effectiveness of
exercise and management of cancer symptoms.
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4.
All of the above does seem to depend on the 'Pro-activity' of your GP & Specialist.
5.
Responses for this item depend on what you mean by ready access. I have access
to refer, but the waiting times for radiotherapy in particular are longer than I
would like and longer than what I think clinically acceptable.
6.
Access is there.. .but 2 hours away with access delays of several weeks.
7.
Questions left blank are not relevant to me as a radiologist.
8.
Feel access to palliative care services should be included.
9.
Access to medical oncology is hampered not by a lack of staff but by their ability
to make work for themselves, ie giving of futile or low efficacy treatment. Also
their over recruitment to industry trials .
10.
Last statement not applicable in my case.
11.
We have to refer to a private radiotherapy company at extra cost for the patients
or they have to travel each day for treatments.
12.
I do not treat these patients so do not have the access you ask about. In the days
when I did (five years ago in 3068) I found goo access to all the above.
13.
I would have trouble catering for the psychosocial needs of my patients if I did not
a thoracic cancer nurse consultant to assist.
Section 6: Outcomes of lung cancer in Australia
Question 6.1: Which factors impact on the outcomes of Lung
Cancer management in Australia?
Guide screen
HP bleak view
No cord
Wait times
Travel
MDT
Stigma
HP under appreciated
Coordination Services
Coordination service delay
Expertise
Resources
Access data
Review
N - Valid
104
104
109
106
102
107
107
107
108
107
107
106
106
102
104
N - Missing
33
33
28
31
35
30
30
30
29
30
30
31
31
35
33
Mean
5.23
5.98
4.17
4.98
5.75
6.07
8.69
4.79
4.74
7.29
5.57
2.94
6.91
5.77
6.11
Median
5.00
7.00
4.00
5.00
6.00
6.00
10.0
0
5.00
4.00
8.00
5.00
2.00
8.00
6.00
7.00
Factors
Clear protocols
Table 6.1: Statistical results
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No cord
Wait times
Travel
MDT
Stigma
HP under appreciated
Coordination Services
Coordination service delay
Expertise
Resources
Access data
2.62
6
2.82
6
2.45
2
1.98
8
2.66
0
2.84
6
2.19
4
2.61
0
2.39
0
2.67
4
2.98
8
3.318
Percentiles - 25
3.00
3.00
2.00
2.75
3.00
5.00
8.00
2.00
2.00
6.00
3.00
1.00
5.00
3.00
2.00
Percentiles - 50
5.00
7.00
4.00
5.00
6.00
6.00
10.0
0
5.00
4.00
8.00
5.00
2.00
8.00
6.00
7.00
Percentiles - 75
8.00
8.00
6.00
7.00
8.00
8.00
10.0
0
7.00
7.00
9.00
8.00
4.00
9.00
8.00
9.00
Factors
Figure 6.1: Factors potentially impacting outcomes
6.1 Open-ended Comment:
1.
Active follow up by GP.
2.
The stigma of Lung Cancer being a Cancer that people deserve effects so many
areas of Lung Cancer treatment.
3.
CT scans are printed on film, DICOM data cannot be imported into hospital PACS
system for accurate review at multimodality meeting. Patients are being irradiated
and because of politics the higher resolution digital images cannot be imported
into the tertiary hospital PACS for proper review at the MDT, as is standard of care
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Review
HP bleak view
2.37
9
Guide screen
2.917 3.03
4
Clear protocols
Std. Deviation
elsewhere in the world. The DICOM data for pet-ct scans are also often not
released, which limits comparison with other CT imaging. There are only political
motivations preventing this.
4.
Lung cancer nurses would assist in the timely management of these patients.
5.
Screening for lung cancer does not exist and is very much unproven.
6.
I work in a remote aboriginal community and patients are reluctant to travel for
cancer treatment.
7.
Access for my NSW public patients is poor whereas private very simple in relation
to obtaining surgery.
8.
The treatment of lung cancer is dictated by the multidisciplinary team, not the GP.
9.
We do have regular clinical meetings, near misses, topic reviews etc, not
restricted to lung cancer cases.
10.
We need to have a accessible database for lung cancer.
Question 6.2:
Please list three factors that would improve lung cancer
management in Australia
Priority 6.2.1: Open-ended Comments:
1.
Greater access to group clinical trials.
2.
Total ban on smoking.
3.
Screening.
4.
Multidisciplinary care in rural areas.
5.
Resources to allow adequate database initiation and ongoing management.
6.
Good pick-up and refer.
7.
Regionally based specialist services.
8.
Evidence based guidelines.
9.
Greater awareness of symptoms among patients.
10.
More PET scanners.
11.
Reduce smoking.
12.
Peer Review and Audit of Interpretation/Reporting of chest radiographs, by
radiologists, along with timely reporting (also need to look at evidence base
around requesting of chest radiographs).
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13.
Better coordination of care.
14.
Early diagnosis.
15.
Greater access to radiotherapy.
16.
Improved national treatment guidelines.
17.
Prevention—ban smoking.
18.
Access to molecular testing like EGFR, MET.
19.
Availability of CT/PET scanning.
20.
Trying to reduce the stigma, by changing all those Ads for quitting smoking, which
only make the stigma worse. Make people more aware of the disease itself, any
symptoms, etc etc. Take control of your body and listen to it.
21.
Better access to radiotherapy for metropolitan residents.
22.
GP awareness of guidelines for diagnosis and management.
23.
Improved availability of extended diagnostic service e.g. EBUS (funding issue).
24.
Open PACS integration between public and private radiology practices, including
rural sites.
25.
Increased pathology service provision.
26.
Co-ordination of services.
27.
Easy access to bronchoscopy/CT biopsy.
28.
Transport infrastructure.
29.
Lung cancer nurses.
30.
Better access to PET scans.
31.
EBUS available to each major centre/MDT group.
32.
Care coordination.
33.
Resourcing clinical care, treatment access and research in proportion to clinical
needs—that means redressing disproportionate resourcing of sexy cancers—breast
and prostate. To fail to take this action is to perpetuate a clear injustice.
34.
Screening patients with long history of smoking.
35.
Increased GP education about how to best detect lung cancer.
36.
Banning smoking!! :-)
37.
Ready access to multidisciplinary teams.
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38.
Education and Symptom Control.
39.
More Pet scanners.
40.
Better coordination of care across disciplines.
41.
A database and someone to administer it.
42.
Readily accessible guidelines.
43.
Access to multidisciplinary team.
44.
Patient awareness of early symptoms.
45.
Recognised time frames from referral to diagnosis and diagnosis to treatment.
46.
Quit-smoking assistance for family members of patients.
47.
Primary prevention—smoking ceasation.
48.
Recognition that surgery should be performed in less than a month in the public
arena.
49.
Multidisciplinary care.
50.
Better alert patients to symptomatology.
51.
Awareness/ outreach to GPs.
52.
Funding for more widespread Lung Cancer MDTs.
53.
Prevention; further decrease in smoking.
54.
Diagnostic improvements (PET).
55.
PET availability.
56.
Better access to specialist care for rural Australia.
57.
A multidisciplinary approach—in my area, there is one such clinic but the other
oncology service lacks one.
58.
Earlier diagnosis—however we lack a good screening strategy.
59.
Improve multidisciplinary team caring for lung cancer patients.
60.
Clear guidelines for treatment of each type.
61.
Early referral/diagnosis.
62.
Increase cigarette tax..
63.
Integration with palliative care services
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64.
Lung function.
65.
Independent ethics committee assessment of clinical trials with consumer
involvement, ie limiting the use of gov funded resources to supplement pharma
R+D.
66.
Quicker access to endoscopy ie within 1-2 days.
67.
Reducing the delay in diagnosis by.
68.
Early diagnosis.
69.
Better management of dyspnoea.
70.
Greater radiotherapy services.
71.
More radiation oncology units.
72.
Coordination between services.
73.
Earlier referral for diagnostic tests such as bronchoscopy to diagnose suspected
lung cancers.
74.
Improved access to PET services.
75.
More research for early detection.
76.
Access to all modalities of treatment in a hospital.
77.
Early referral.
78.
Better national data management to identify areas of under-referral or underperformance.
79.
Better coordinated care (multidisciplinary teams).
80.
Improved coordination among clinicians.
81.
Greater access to thoracic surgery.
82.
Multi disciplinary teams.
83.
Faster access to chest physicians/lung clinics.
84.
Shortening public health services access block/waits.
85.
Better access to investigative modalities, particularly PET scans.
86.
MDTs.
87.
Easier access to care team.
88.
Don't know.
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89.
Improve access to chemotherapy.
Priority 6.2.2: Open-ended Comments:
1.
Patient awareness.
2.
Stop people living into late middle/old age!
3.
New drugs.
4.
More oncologists in rural areas.
5.
Quick access to specific treatment.
6.
Improved transport in rural areas.
7.
Access to PET scans.
8.
Better coordination of care once patient referred.
9.
All suspected or proven lung cancer discussed at MDM.
10.
Improve regional rural based oncology services.
11.
Secure follow-up/test tracking arrangements of abnormal chest radiographs that
could indicate malignancy: Need policies and standards around test result
communication by radiologist (critical test result notification policy) and referrer;
IT systems; safety net provisions so that prompt clinical action occurs
(=important public health measures); patient involvement in process; Electronic
and personal health records.
12.
Equal or greater funding that other cancers.
13.
Early referral to management.
14.
Improved electronic/ on line access to patient files/ images.
15.
Allied heath to see patients as inpatients/outpatients/ and to provide specialist
community input.
16.
Faster access to PET scans.
17.
Higher awareness of pathologists to the ever growing importance of histological
subtype.
18.
Annual screening CXR in smokers.
19.
The money the government gets from cigarette taxes go into Lung Cancer
Research and treatment not into general revenue. More money for setting up
Support systems, as easy as putting a Lung Cancer Nurse Coordinator, in every
Oncology Department and Radiotherapy Centre. Have a clear report/list of all
support services available to people diagnosed with Lung Cancer.
20.
Better access to all anti cancer treatment for rural and remote residents.
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21.
Increased patient awareness of signs and symptoms that may indicate that
assessment is necessary.
22.
Improved access to lung cancer services from outreach and country areas.
23.
Co-registered DICOM pet-ct data should be provided with every scan on a CD,
without encryption or a viewer.
24.
Guidelines specifying goals for time to specialist assessment, diagnostic
procedures and definitive treatment.
25.
Multidisciplinary review.
26.
Lung cancer nurses.
27.
Timeliness to get treatment.
28.
Mobile multidisciplinary care teams to help in rural and remote areas.
29.
National commitment to reduce smoking in all age groups.
30.
Proper MDTs.
31.
Universal access to specialist lung cancer nurses.
32.
Increased timeliness of referral to bulk billing services.
33.
Better outreach services to rural areas.
34.
Improved access to diagnostic bronchoscopy—akin to open access endoscopy.
35.
Palliative Care Involvements.
36.
More EBUS for Dx and staging.
37.
Case manager/liaison nurse.
38.
More pt-centred clinical research.
39.
Multidisciplinary teams.
40.
More resources for allied health professionals.
41.
Faster availability of treatments when supporting evidence becomes available.
42.
More support with smoking cessation.
43.
Improved support services.
44.
Medicare item number for multidisciplinary team meeting in private practice—all
done at present in our own time without financial reward.
45.
Tax cigarettes at $30 packet.
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46.
Remove stigma applied to smokers.
47.
Awareness/outreach to resp physicians.
48.
Funding for better availability of radiology and pathology tests.
49.
Earlier diagnosis; good screening test.
50.
More gp education via local hospitals.
51.
Palliative care services.
52.
Multidisciplinary help throughout Australia.
53.
Timely referral to palliative care—most will not survive!
54.
Targeting high risk groups and geographic areas—often at the city fringe.
55.
Improve accessibility to oncologist and respiratory physicians.
56.
Education of diagnostic procedure gamuts.
57.
Regular updates for GPs/Resp Physicians.
58.
Better access to multidisciplinary clinics.
59.
Better symptom management.
60.
Bronchoscopy.
61.
Improved coord of services, eg wide use of nurse practitioners to aid patient
journey.
62.
Less delays for PET scanning.
63.
Access to a one stop referral point for a complete work up of a suspected lung
cancer.
64.
Rapid access to clinicians.
65.
Community availability of opioids to manage breathlessness.
66.
Increased support for MDM.
67.
Better accommodation options for patients/relatives near tertiary treatment
centres.
68.
Fast turnaround time for investigations.
69.
Referral of all lung cancer patients to denoted lung cancer specialists who see and
treat a minimum number of lung cancer patients per year (includes respiratory
physicians, surgeons, radiation and medical oncologists).
70.
More thoracic surgeons.
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71.
More training for health workers for preventive and early detection.
72.
Better communication between specialists.
73.
Timely investigations.
74.
Education of general physicians and general practitioners to refer all patients to a
lung cancer clinician.
75.
Better access for rural patients.
76.
Improved access to PET imaging.
77.
Easier access to PET.
78.
More PET scanners.
79.
Faster access to oncology teams.
80.
Better co-ord so more of the care CAN be done regionally.
81.
Better resources outside of tertiary referral centres.
82.
Availability of clinical guidelines.
83.
Easier bronchosocpy.
84.
Improve community based palliative care services.
85.
Screening of at risk groups.
86.
Multidisciplinary meetings.
87.
Thoracic surgeon availability for regional & remote areas.
88.
Research.
89.
Expansion of radiotherapy services.
Priority 6.2.3: Open-ended Comments:
1.
Better regional service provision.
2.
More regional cancer care centres.
3.
GP to be a good organiser to coordinate whole management.
4.
Early intervention programs.
5.
More knowledge re tests for Dx.
6.
Better communication at the interface with primary care.
7.
Research funding increase.
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8.
Improve ambulatory/community support to minimise treatment side effects.
9.
Improved and resourced involvement of the Radiologist in the MultiD team, with
better coordination/ teamwork/communication, and audit. National and
International standards.
10.
Greater awareness in community and by medical staff of the impact on nonsmokers.
11.
Smoking cessation clinics.
12.
More hospital beds.
13.
Improved lung cancer multidisciplinary teams.
14.
More coordinated interdisciplinary care.
15.
More access to trials of novel agents like MET inhibitors.
16.
GP and patient education about early symptoms. Also improve services such as
Quitline for the nicotine addicted.
17.
Make some ads about the people, who are being treated for Lung Cancer, the
ones that are on a Chemo drug that has few side effects, show people that the
treatment is not as bad as doing nothing. Show people it is not always terminal. It
is peoples attitude towards Lung Cancer, not just patients but all the other
Specialists, Nurses etc.
18.
Treatments that are effective in curing late presenting disease! I wish!!!
19.
Awareness by GPs of appropriate investigations.
20.
Funding for regional lung cancer centre.
21.
Greater facilities & staff in cancer centers / tertiary hospitals to cope with
increasing prevalence from an aging population.
22.
Health promotion.
23.
More positive approach by non cancer specialists.
24.
Care for the carers.
25.
Higher detection of asymptomatic early stage cancers.
26.
Interested medical oncologists and radiation oncologists.
27.
Coordination of management between community and hospitals.
28.
More streamlined referral into the tertiary system.
29.
Multidisciplinary approach.
30.
More radiotherapists and oncologists.
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31.
Earlier referral for palliative care involvement in Stage 4.
32.
Access to support groups.
33.
Family being able to travel with the patient and stay with them.
34.
Patient education.
35.
More radiotherapy time and PET scanners.
36.
Increased palliative care services.
37.
Greater research funding.
38.
Further reduce smoking.
39.
More dedicated thoracic surgical input.
40.
Updated practical lung cancer guidelines for diagnosis and management.
41.
Better anti-cancer systemic agents/drugs.
42.
More school education.
43.
Allied health esp psychology.
44.
Thinking carefully about treating anyone with a lot of co-morbidity.
45.
Improved Palliative Care Services.
46.
Raise the index of suspicions for lung cancers in primary care.
47.
Public education about outcomes in a realistic perspective.
48.
Access to diagnostic services.
49.
Increase training numbers of thoracic physicians and surgeons.
50.
Better patient and family support.
51.
Physio.
52.
Credentialing thoracic phys doing FOB, ie make sure all that do FOB can then
triage cancers to special units.
53.
Less delay in the public system for invasive biopsy.
54.
Improved access to allied and psychological support services.
55.
Consideration for rural patients in terms of costs for accommodation.
56.
Community based services to assist caregivers to manage care needs.
57.
More PET scanners.
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| 92
58.
More education of patients.
59.
The investigation report being followed up by more than GP (e.g physician).
60.
Presentation of all lung cancer patients at a multidisciplinary team meeting or
alternatively all cases where management recommended deviates from
guidelines.
61.
Improved education GPs.
62.
More research in treatment modalities for dif. types of lung cancer.
63.
Shorter waiting times to start chemotherapy.
64.
Lung case manager.
65.
Support for translational research infrastructure at high volume sites.
66.
Shorter waiting times.
67.
Improved access to thoracic surgeons.
68.
Better availability for beds in nursing homes.
69.
Better funding to support transport, accommodation, carers going tertiary etc.
70.
More research into screening and preventative measures.
71.
Better after hours community palliative care services.
72.
Easier access to palliative treatments.
73.
Improve access to PET scanners.
74.
Aggressive investigation of pulmonary nodules.
75.
Treatment with out delay.
76.
Follow up with case studies with GPs.
77.
Early diagnosis.
78.
Expansion in the number of cancer nurses and MDT coordinators.
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Appendix 6: Consultation Round 2 Results
Survey 2: Results Summary
Section 1: Some information about you
Question 1.1:
Please mark the capacity/position in which you are answering questions in the
survey
Table 1.1: Participant Demographics: Professional Description
Participant Demographics
Frequency
Percent
Advanced trainee general practice
4
2.67
Advanced trainee medical oncologist
5
3.3
Advanced trainee palliative care
2
1.33
Advanced trainee respiratory medicine
1
0.67
Cardiothoracic surgeon
3
2
Care coordinator
2
1.33
Consumer
1
0.67
Dietitian
5
3.3
General practitioner
20
13.3
General radiologist
7
4.8
General surgeon
5
3.3
Medical oncologist
14
9.33
Nurse practitioner (hospital)
1
0.67
Nursing director (administration)
1
0.67
Palliative care nurse coordinator in an acute
hospital
1
0.67
Palliative care physician
13
8.67
Pharmacist
1
0.67
Physiotherapist
4
2.8
Psychologist
1
0.67
Practice support officer
1
0.67
Radiation oncologist
7
4.8
Radiation therapist
1
0.67
Registered nurse (general practice)
1
0.67
Registered nurse (hospital)
10
6.67
Research director
1
0.67
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Participant Demographics
Frequency
Percent
Research nurse/manager
1
0.67
Researcher
11
7.33
Respiratory physician
18
12
Thoracic surgeon
3
2
Not answered
5
3.3
Total
150
100
Question 1.2:
In which state or territory do you work principally?
Table 1.2: Participant Demographics: State
State
Frequency
Percent
Australian Capital Territory
1
0.67
New South Wales
45
30
Northern Territory
1
0.67
Queensland
24
16
South Australia
15
10
Tasmania
7
4.66
Victoria
23
15.33
Western Australia
25
16.67
Not answered
9
6.0
Total
150
100
Question 1.3:
In what Region do you work primarily?
Table 1.3: Population Demographics: Region
Region
Frequency
Percent
Metropolitan
84
56
Regional
18
12
Remote
2
1.33
Rural
13
8.67
Not answered
33
22
Total
150
100
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Question 1.4:
In what Sector do you work primarily?
Table 1.4: Population Demographics: Sector
Sector
Frequency
Percent
Academic/Research setting
23
15.33
Policy
1
0.67
Private hospital
3
2
Private practice
38
25.33
Public hospital
48
32
Public practice
29
19.33
Not applicable
2
1.33
Not answered
6
4
Total
150
100
Section 2: Improving diagnosis of lung cancer
Question 2.1:
Do you perceive VARIATIONS for diagnostic/staging practices in the clinical
area in which you work or represent?
Table 2.1: Perceived VARIATIONS in diagnostic / staging practices in clinical
area
Answer
Frequency
Percent
No
68
45.33
Yes
57
38.00
Not answered
25
16.67
Total
150
100
2.1 Open-ended Comments:
1.
We try and follow up all clinically suspicious cases.
2.
Although MDT is a team tool for patient management—the primary physician will
always decide what they believe is best for their patient.
3.
EBUS transbronchial needle aspiration has the potential to significantly improve
staging of lung cancer by sampling of hilar and mediastinal LN, but is only
available in one or two centres and consequently is under utilised. PET scanning is
only available in one centre in WA and time constraints may limit access to this
staging modality.
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4.
Yes at multiple levels. Many patients don't get beyond GPs. Many don't get access
to appropriate surgical opinions. PET scans are variably accessible.
5.
Variation has improved with institution of MDM.
6.
Virtually all patients are staged with a PET scan. The main variable is whether
enlarged nodes are sampled for definite proof of involvement. Mostly not, but this
is changing to some extent with availability of EBUS.
7.
Poor access to PET scanning outside of metro area. ? less access to surgery
outside metro area.
8.
Best if patient suspected of having lung cancer is referred early to a respiratory
physician.
9.
After MDT meetings, a diagnostic plan is decided on which is standard for our
Unit.
10.
Depends on public patient or privately insured.
11.
Slightly more difficult for my patients to access EBUS and PET than those who
reside in a metropolitan area.
12.
Depends on who sees the pt first and whether they attend the lung cancer
multidisciplinary team meeting. General physicians and non-attendees are less
likely to fully stage pt.
13.
Difference in how or when pts are referred to our combined lung services. Once
they are seen there, things are quite streamlined and orderly.
14.
Minor variations only.
15.
PET availability can limit usage.
16.
I haven't seen any cases recently, so hard to comment.
17.
Often very patient and situation dependant—co-morbidities, initial diagnosis,
malignancy type, initial follow-up and timing of referral to the multi-disciplinary
lung team.
18.
Non clinical.
19.
Depends upon (1) to whom patient first referred eg. respiratory physician,
thoracic surgeon, acute hospital (2) public/private (3)rural or 'in town'.
20.
Has not diagnose any lung cancer yet.
21.
Private much quicker.
22.
Variability in determining lymph node pathological staging after PET scans.
23.
I think it is MultiD management; uncertain about formal pathway/protocol.
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24.
Private sector = predictable whereas public sector is unpredictable re being
extraordinarily efficient or inefficient.
25.
I do but this is due to many causes not the least of which is timing of patient
presentation.
26.
I don't work in a clinical area, so cannot comment.
27.
I do not work in a clinical setting.
28.
My research/clinical area does not include individuals with lung cancer.
29.
N/A.
30.
Variable referral times and pathways.
Question 2.2:
In your practice setting in which you work or represent, do you observe DELAYS
in diagnosis/staging of lung cancer?
Table 2.2: Do you observe DELAYS in diagnosis/staging of Lung Cancer?
Answer
Frequency
Percent
No
49
32.67
Yes
77
51.33
Not answered
24
16.00
Total
150
100
2.2 Open-ended Comments:
1.
Access to PET scan and Radiotherapy services.
2.
Occasionally, usually due to clinical factors or remote locations.
3.
Try not to.
4.
Occasionally suspicious chest x-ray lesions are overlooked or ignored and
appropriate review or management are not organised.
5.
Service limitations—demand on access to CT / PET-CT is increasing.
6.
Multiple difficulties, availability of theatre time for EBUS bronchoscopy, waiting
time for PET scan several weeks etc.
7.
Mainly from accessing a limited resource such as PET scanning.
8.
Yes—not general access to PETs. Some patients not being referred early enough.
9.
From initial symptom presentation to primary health provider to investigations
that lead to diagnosis.
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10.
Sometimes incomplete referral detail may delay the booking of a new patient with
a more serious diagnosis.
11.
Impossible to get cts at rah in less than a few mths notice.
12.
The main delay I see is a patient having an investigation and then waiting for
some time for the follow up appointment to discuss the result and organise the
next step.
13.
Access to biopsy services.
14.
Waiting lists for bronchoscopy 2 weeks, Endobronchial ultrasound guided biopsy
3-4 weeks, PET scans 3 weeks. Major delay is wait to see medical oncologist 7
weeks, then after that to have chemotherapy another 4-6 weeks. Radiation
oncology delay to see radiation oncologist is short 1-2 weeks, but then delay to
have radiotherapy is another 6 weeks.
15.
Obtaining a PET scan can sometimes take >2 weeks.
16.
There are strong links between Respiratory Physicians, Surgeons, Medical and
Radiation Oncologists is close.
17.
Delays in patients seeing specialists for bronchoscopy.
18.
Once the concern is raised it may be weeks before appointment available for
definite diagnosis/ management, but usually accommodated as soon as possible.
19.
2-3 week delay for PET scan. FNA often limited by availability of cytologist.
20.
Slight.
21.
Limited experience with lung cancer patients thus far.
22.
This is always going to happen in any system but the absence of a Public PET
Scanner in Tasmania is a major issue.
23.
Some difficulty in getting access to CT scans in public hospital and some delays in
accessing PET scans.
24.
There are inevitable delays in diagnosis but once a diagnosis is suspected things
move quickly.
25.
Not a useful question! Dealys occur occasionally.
26.
As above (delays in getting a PET).
27.
Only with history of late presentation to medical practitioner.
28.
Particularly public and rural patients.
29.
Not applicable.
30.
Lung masses identified on CXR or CT Chest are sometimes not followed up or lost
to follow-up, then re-present symptomatically.
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31.
As before.
32.
More remote patients take up to 4 times as long to access services due to issues
with travel and access to CT.
33.
NOT PARTICULARLY DEPENDS ON WHICH PHYSICIANS INVOVLED.
34.
There have been cases of delayed diagnosis related to chest xray reports
describing possible lung cancer not being followed-up on, nor directly
communicated, for various reasons.
35.
Multifactorial from late pt presentations, pts delaying investigations b/c of gap
fees on imaging, delays getting pts appts @ outpts clinics etc. of course missed
diagnosis too.. .chronic cough when pertussis outbreak amongst older citizens =
more of a challenge as to who to xray when clinically clear chest.
36.
Access to PET scan, especially for rural patients.
37.
Usually, no, unless for cases where the patients have delayed their presentations
to seek medical help.
38.
Limited access to CT biopsy.
39.
Limited availability of PET scanning and Endobronchial ultrasound can delay
staging procedures.
40.
I cannot comment as I only see patients with confirmed diagnoses.
41.
My research/clinical area does not include individuals with lung cancer.
42.
Delays in getting appointments to see specialist.
Question 2.3:
Variations in the evidence based use of diagnostic and staging interventions of
lung cancer contributes to variations in outcomes.
Table 2.3: Evidence based use diagnostic/staging interventions contribution to
VARIATION
Variations
Frequency
Percent
Strongly disagree
2
1.33
Disagree
12
8.00
Somewhat agree
39
26.00
Agree
55
36.67
Strongly agree
18
12.00
Not answered
24
16.00
Total
150
100
2.3 Open-ended Comments:
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1.
It is the use by the individual treating physician of the early use of diagnostic
tools which will determine the eventual outcome for the patient.
2.
I suspect this to be the case but lack evidence to support this claim.
3.
We do not invasively stage the mediastinum as much as we should.
4.
Tissue diagnosis is essential, scan results are a guide only.
5.
PET scanning changes up and downstages in a large percentage of cases. Less
frequent use of PET can cause variations.
6.
Unsure as not often aware of the outcomes.
7.
Can't comment accurately as I don't see sufficient cases. I presume we are talking
about primary lung cancer?
8.
Evidence based medicine obviously has a large impact on how a
diagnostic/staging issue is pursued and resolved, but hopfully in most cases there
is a general (current) consensus on how to proceed and resolve most questions.
9.
Access to services (medical assessment & investigations) is more important in
causing variation
10.
Need national and international guidelines, with implementation strategies than
ensure audited compliance with feedback, and measures; and also mandatory
documentation of any variation from pathway.
11.
I feel that this is strongly influenced by the stage of patient presentation to a GP
and the GP's speed in facilitating action.
12.
Poor or late staging has potential to affect the type of treatment and therefore
outcome.
13.
N/A cannot comment.
14.
Managing of comorbidities can be challenging.
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Section 3: Investigation for lung cancer
Question 3.1:
Please indicate your level of agreement with the influence of the following
factors on the accurate and timely DIAGNOSIS of Lung Cancer.
Decision delay
115
115
117
115
117
117
117
N - Missing
16
16
16
16
18
18
16
18
16
16
16
Mean
7.57
4.84
5.44
5.02
4.81
5.31
5.92
6.33
5.32
5.48
6.62
Median
8.00
4.00
5.00
5.00
5.00
5.00
6.00
7.00
5.00
5.00
7.00
Std. Deviation
1.909
2.410
2.002
2.301
2.251
2.241
1.881
2.398
2.059
2.528
2.016
Percentiles - 25
6.50
3.00
4.00
3.00
3.00
3.00
5.00
5.00
4.00
3.00
5.00
Percentiles - 50
8.00
4.00
5.00
5.00
5.00
5.00
6.00
7.00
5.00
5.00
7.00
Percentiles - 75
9.00
7.00
7.00
7.00
7.00
7.00
7.00
8.00
7.00
8.00
8.00
Statistical
results
Comorbidities
Distance
117
No Access
MDT
No followup
117
Access
guidelines
Futility patient
117
Lack
recognition
117
Patient
reluctance
N - Valid
Patient delay
Futility HP
Table 3.1: Statistical results
Figure 3.1: Perceived variations in diagnostics / staging practices in clinical
area
3.1 Open-ended Comments:
1.
Inefficient outpatient service.
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2.
Pts who are worked up through MD meetings are diagnosed and staged much
more quickly than for example, a country pt who doesn't have (easy) access to
MD team.
3.
As a palliative care specialist—hard for me to comment—I usually see people
sometime after they present and tend to focus less on the initial diagnosis, unless
it is something which concerns the patient.
4.
Again, I am concerned my answers aren't representative as I have seen so few
cases.
5.
Delay in review of patient after test is ordered and performed; inability of health
professional to order multiple critical tests at one time—instead ordering tests one
at a time.
Section 4: Improving diagnosis of lung cancer
Question 4.1:
Is there variation in APPROPRIATE and TIMELY REFERRAL for diagnostic and
staging investigations in your area of experience?
Table 4.1: Is there variation in APPROPRIATE and TIMELY REFERRAL?
Answer
Frequency
Percent
No
49
32.67
Yes
76
50.67
Not answered
25
16.67
Total
150
100
4.1 Open-ended Comments:
1.
No local access to PET scan. Delay in fine needle biopsies in public sector.
2.
If there is the slightest suspicion we have very good private and public facilities to
follow up diagnosis and Rx.
3.
More related to rural patients.
4.
Inpatient bronchoscopy more rapid than patients referred to outpatient services,
but inevitably so.
5.
We can experience delays in obtaining some investigations, notably bronchoscopy
and PET.
6.
Where I work we have timely access to investigations.
7.
Usually able to access this quicker with private insurance rather than in the public
sector.
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8.
There can be long delays in patient workup and staging partly. This may be due to
resources (ie availability of biopsy, cytology, PET scan) but also clinician and
sometimes patient nihilisim and lack of awareness of importance of early referral.
9.
Generally good and appropriate, but not always.
10.
We are fortunate within our area health services to streamline timely referral,
staging etc. It is patients in the rural areas that are most handicapped re timely
referrals, diagnostic tests etc.
11.
Not after a diagnosis is suspected and initial testing is performed.
12.
Can't judge.
13.
Unfortunately as an imaging specialist I do not have the relevant information to
make a valid comment on this point.
14.
In 'my area of experience' no delay in timely referral but delay in being able to
access some diagnostic/staging tests eg. ebus, bronchoscopy etc.
15.
Occasionally.
16.
As per prev answers of pt, geog, $, dr, hosp, specialist variables & imaging etc
services availability.
17.
I can't comment as I only see patients with confirmed diagnoses, but the system
refuses to allow me to proceed without providing an answer.
18.
Although over 90% of patients are referred, a significant proportion are not
referred to a treating physician who may be the best judge to whether the patient
is appropriate for treatment.
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Section 5: Improving diagnosis of lung cancer
Question 5.1:
Do you think these variations in APPROPRIATE and TIMELY REFERRAL
contribute to variations in outcomes?
Table 5.1: Do referral variations contribute to outcome variations
Answer
Frequency
Percent
No
5
6.67
Yes
67
44.67
Not answered
78
52
Total
150
100
5.1 Open-ended Comments:
1.
Delay in treatment worsens outcomes.
2.
Not possible to make a judgment about this.
3.
Difficult to say—it has been a long time since I worked clinically with these
patients.
4.
Sometimes.
5.
Rarely.
6.
Probably more from a psychological angle with a longer time of living with
uncertainty rather than a real change in clinical outcome.
7.
Not uncommonly we see that the tumour has progressed on the planning CT scan
and PET scan done for radiotherapy when compared to the diagnostic CT which
may be 4-8 weeks old.
8.
We see some pts who had a potentially operable cancer a few months or even
years ago, who now are clearly inoperable.
9.
Once diagnosed (the variation) referral and staging seem timely.
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Section 6: Improving diagnosis of lung cancer
Question 6.1:
In your opinion will the following initiatives improve the timely DIAGNOSIS and
STAGING of lung cancer and improve outcomes?
Table 6.1: Statistical results
Statistical results
Updated Targeted Targeted
Improve Access to List of
Guideline education education d access specialist locally
s
— Patient — Health
to MDT
lung
availabl
Profession
cancer
e
al
networks services
Prognosis,
risk,
surgery
suitability
Informatio
n
Diagnostic
Informati
on for
Patient
N - Valid
114
113
111
114
113
113
113
112
N - Missing
19
20
22
19
20
20
20
21
Mean
7.17
7.24
7.68
7.82
7.87
6.95
6.94
7.27
Median
8.00
8.00
8.00
8.00
8.00
7.00
7.00
8.00
Std. Deviation
2.402
2.135
1.869
1.926
1.878
2.382
2.253
2.214
Percentiles - 25
5.00
6.00
7.00
7.00
7.00
5.50
5.00
6.00
Percentiles - 50
8.00
8.00
8.00
8.00
8.00
7.00
7.00
8.00
Percentiles - 75
9.00
9.00
9.00
9.00
9.00
9.00
9.00
9.00
Figure 6.1: Perceived probability of initiatives to improve timely diagnosis,
treatment and outcomes of lung cancer
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6.1 Open-ended Comment:
1.
Mutidisciplinary pathways for lung cancer including palliative care options.
2.
Lung cancer hotline for each area that links to MDT.
3.
More lung cancer nurse coordinators who will work effectively within the mdt,
local GP services and in educating the wider public. At present there are 7 lung
cancer nurses in NSW.. .some positions are shared with other tumour groups.
4.
Guidelines are useful but do not cover every unique situation and all variables—
the point where a multi-disciplinary approach is so useful. Provide individual
mentors.
5.
More specialist doctors in regional centres (program not accepting dots).
6.
This information needs to be strongly focused to communities of people with
English as a second language.
Question 6.2:
Where would clinical guidance information on DIAGNOSTIC and STAGING best
be targeted
Table 6.2: Statistical results
Statistical results
Frequency
Percent
General Practitioners
109
91.6
Respiratory Physicians
76
63.9
General Physicians
66
55.5
Palliative care Physicians
15
12.6
Anaesthetists
3
2.5
Radiologists
31
26.1
Medical Oncologists
40
33.6
Radiation Oncologists
32
26.9
Thoracic Surgeons
44
37
Cardiothoracic surgeons
30
25.2
Consumer material
48
40.3
Nursing and Allied Health
34
28.6
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Figure 6.2: Where information would be best targeted
Section 7: Health professionals at the time of diagnosis
Question 7.1:
In your experience do you access a multidisciplinary team of specialists at the
time of DIAGNOSIS and STAGING?
Table 7.1: Statistical results
Statistical results
Frequency
Percent
No
8
5.33
Yes
80
53.33
This question does not apply to me
—
19.33
Not answered
33
22
Total
150
100
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Figure 7.1: Do you access an MDT at diagnosis
Question 7.2:
Do you consider that the following health professionals should be part of the
MDT at time of DIAGNOSIS?
Table 7.2: Statistical results
Statistical results
YES
NO
Medical oncologist
98.3
1.7
General practitioners
77.6
22.4
Respiratory physicians
99.1
0.9
Radiation oncologists
96.5
3.5
Palliative care physicians
77.9
22.1
Surgeon
96.4
3.6
Care coordinator / Lung cancer nurse
96.6
3.4
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Figure 7.2: Type of health professional should be part of the MDT at time of
diagnosis
7.2 Open-ended Comment:
1.
Nuclear Medicine specialist, pathologist.
2.
GP by invitation.
3.
Dietitian.
4.
Pathologist!!! Radiologist!!! Wish list—Social worker. Psychologist—high rate of
anxiety in this GP.
5.
GPs don't have many pt/yr so? worth their time.
6.
Social worker.
7.
Radiologist, pathologist.
8.
Radiologist, maybe pathologist.
9.
Radiologist, pathologist.
10.
GPs are welcome to come but in practice do not attend our MDT. Social worker.
11.
Occupational therapist, social worker, dietitian, physio.
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12.
Allied Health.
13.
Pathologist & radiologist & nuclear medicine.
14.
I think a palliative care physician would be helpful if patient has metastatic
disease or other co-morbidities that prohibit curative therapies, but not if the
patient is receiving treatment with curative intent. Radiologist.
15.
I didn't include GP as difficult to get them in to each meeting but communication
with GP must be a
16.
priority.
17.
Pathologist.
18.
Pathologist.
19.
Social worker.
20.
Radiologist.
21.
Surgeon should be thoracic, GP not practical.
22.
GP would be good, but usually not practical.
23.
Not necessarily at Diagnosis but certainly at the beginning of the treatment
process as diagnosis as such will often be in GP office.
24.
Radiologist with PET training. Pathologist.
25.
Psycho-oncologist.
26.
GP should be involved in decision making—re psychosocial issues and comorbidities.
Section 8: Health professionals at the time of diagnosis
Question 8.1:
In your practice setting/experience do you witness VARIATIONS in ACCESS to
MDT?
Table 8.1: Statistical results
Statistical results
Frequency
Percent
No
57
38.0
Yes
63
42.0
Not answered
30
20.0
Total
150
100
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Figure 8.1: Variations in access to MDTs
8.1 Open-ended Comment:
1.
Depends on holidays as meeting only once weekly.
2.
Only for rural patients who cannot attend metropolitan hospitals.
3.
Not all centres have radiation or thoracic surgery and palliative care availability is
disastrous.
4.
Private practice has "pretend mdts" ie a few with minimal subspecialty interest
may discuss case to get medicare mdt fee, or no mdt at all. Also focus of med
oncs on what trial thay can get people into.
5.
Difficult to say—see previous comment.
6.
Rural sector.
7.
If a respiratory physician (who is the commonest person to make the diagnosis) is
not attached to a hospital who has a MDT team then that patient is unlikely to be
discussed there.
8.
Use of and access to mdt in private sector is difficult.
9.
Not every local practitioner involved in the care of lung cancer patients is
prepared to have their cases discussed at an MDM.
10.
? no availability of multidisciplinary teams in this area.
11.
It is not so much access as who choses which patients to present at the mdt.
Physicians who do not attend the mdt will not present their patients. Sporadic
attendees also select which patients to present.
12.
All the patients I see are seen at a major teaching hospital.
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13.
Can depend on range of specialists available.
14.
Regional centre. considers all cases referred to our centre.
15.
Transport, costs, time, inclination of pt, style of GP & specialists involved,
multidisc teams in public hosp dont routinely involve the patient directly.
16.
Regional centre affiliated with tertiary city hospital.
17.
Frequency is the major issue with at times 3+ weeks between meetings.
18.
Patients in the private sector have much less access to an integrated team in my
experience and this is certainly true when the need is for Allied Health or nursing
support. There is no question that this is the case. Palliative Care support in the
private sector particularly for people requiring in PATIENT CARE IS WITH SOME
EXCEPTIONS VERY PATCHY.
19.
Not within central metropolitan area.
20.
Do not work in clinical setting.
Section 9: Health professionals at the time of diagnosis
Question 9.1:
What are some of the reasons for this variation in access to an MDT at the time
of DIAGNOSIS?
Table 9.1: Statistical results
Statistical results
Percent
Frequency
I am not convinced of the benefit of a multidisciplinary team
5.4
3
The incentive to participate in a multidisciplinary team is not sufficient
19.6
11
There is no multidisciplinary team in my area
25
14
I am unaware of how to access a multidisciplinary team
12.5
7
The distance to travel limits me accessing a multidisciplinary team
19.6
11
The location of specialists across public and private sectors challenges the
conduct of multidisciplinary team meetings
64.3
36
The time involved limits me participating in a multidisciplinary team
32.1
18
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Figure 9.1: Reasons for variation in MDT access
9.1 Open-ended Comment:
1.
Not all specialists available at all hospitals.
2.
Poor chair skills of the MDT meeting, limits discussion and outcomes, makes
attending less worthwhile.
3.
Lots of patients go thru private system.
4.
I chair a MDT so I'm hooked on the idea. My previous comments did not pertain to
myself but rather colleagues not associated with hospitals who have a MDT.
5.
Medicare does not realistically support this.
6.
And see previous comment.
7.
"Political problems", medical oncologists either sabotaging or highjacking the
meeting.
8.
Timely referral to a specialist participating in the multidisciplinary team.
9.
Meetings occur every second week creating delays, and there is no thoracic
surgeon involved.
10.
Frequency of the meetings and the need for all the oncologist to be there (i.e.
their inability to stream).
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11.
Multidisciplinary teams do not always have to meet in the one place at one time.
12.
Limited no of palliative care clinicians limits ability to be present at all MDT
meetings.
13.
MDT meetings are not run as intended, as a discussion about prospective or
current patients.
Section 10: Improving monitoring of individuals at high risk
Question 10.1:
In your setting do you have clear protocols for the monitoring of patients with
respiratory symptoms who are not diagnosed with lung cancer on initial
presentation?
Table 10.1: Statistical results
Statistical results
Frequency
Percent
No
88
58.67
Yes
29
19.33
Not answered
33
22.00
Total
150
100
Figure 10.1: Are clear protocols for monitoring high risk individuals available in
your setting?
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Question 10.2:
In your opinion, do you think guidance material to monitor patients with a high
risk for lung cancer would be beneficial?
Table 10.2: Statistical results
Statistical results
Frequency
Percent
No
23
15.34
Yes
92
61.33
Not answered
35
23.33
Total
150
100
Figure 10.2 Benefits of developing guidance materials for monitoring high risk
patients
Question 11.1:
From your experience please indicate your level of agreement of the influence
of the following factors on the effective TREATMENT of lung cancer
Variations in
radiotherapy
Variations in oncological
treatment
Variations in surgical
treatment
Variations in palliative
care
Patient reluctance to
travel
Access to multidisciplinary team
Long distance to
specialist services
Radiotherapy
intervention delays
Medical oncology
intervention delays
Surgical intervention
delays
Access to guidance
materials / Specialist
care
Failure to follow up
patients at risk
Treatment futility—
health professional
Treatment futility—
patient
Statistical results
Table 11.1: Statistical results
N - Valid
106
106
106
106
106
105
106
107
106
107
107
106
106
104
N - Missing
27
27
27
27
27
28
27
26
27
26
26
27
27
29
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Variations in
radiotherapy
Variations in oncological
treatment
Variations in surgical
treatment
Variations in palliative
care
Patient reluctance to
travel
Access to multidisciplinary team
Long distance to
specialist services
Radiotherapy
intervention delays
Medical oncology
intervention delays
Surgical intervention
delays
Access to guidance
materials / Specialist
care
Failure to follow up
patients at risk
Treatment futility—
health professional
Treatment futility—
patient
Statistical results
Mean
5.86
6.11
5.46
6.03
5.29
4.85
5.59
6.74
5.61
5.22
5.31
5.20
5.16
5.12
Median
6.00
6.00
5.00
6.00
5.00
5.00
6.00
7.00
5.50
5.00
5.00
5.00
5.00
5.00
Std. Deviation
2.223 2.273 2.318 1.954 2.125 2.152 2.441 2.169 2.569 2.312 2.349 2.188 2.057 2.101
Percentiles - 25
4.00
5.00
4.00
5.00
3.00
3.00
3.75
5.00
3.00
3.00
3.00
3.00
3.00
3.00
Percentiles - 50
6.00
6.00
5.00
6.00
5.00
5.00
6.00
7.00
5.50
5.00
5.00
5.00
5.00
5.00
Percentiles - 75
8.00
8.00
7.00
8.00
7.00
6.00
8.00
9.00
8.00
7.00
7.00
7.00
6.00
7.00
Figure 11.1: Factors influencing the effective treatment of lung cancer
11.1 Open-ended Comment:
1.
Ageist attitudes of medical practitioners.
2.
It is difficult for me to comment on some of these options as I am a palliative care
specialist and usually only involved once the focus of care becomes palliative.
Literature review and national consultation on factors impacting on lung cancer outcomes
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3.
Again it would mean taking that unique patient's factors into consideration—often
difficult to generalise in such situations.
4.
Financial implications of travel & treatment.
5.
Lack of intensive care beds in public.
6.
TIME TO WAIT FOR MACHINE TIME IN RT INFLUENCES WHETHER WE BOTHER
GIVING IT OR NOT OR PROCEEDING TO SYSTEMIC THERAPY.
7.
Experience of those delivering the care with lung cancer.
8.
Language / culture & information sharing.
9.
I don't have any experience in managing lung cancer.
Question 11.2:
In your practice setting/experience, do you have access to an MDT for the
treatment of Lung Cancer?
Table 11.2: Statistical results
Statistical results
Frequency
Percent
No
24
16.0
Yes
87
58.0
Not answered
39
26.0
Total
150
100
Figure 11.2: Practice / setting experience of access to MDT for treatment
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Question 11.3:
To what level do you think the following information should be included in
clinical guidance material?
Adjunctive symptom
management
strategies
Provision of target
timelines
Evidence based
strategies for
palliation
Evidence based
strategies for
Treatment
Evidence based
recommendations for
diagnosis
Surgery suitability
and operative risk
Determining
prognosis
Managing
comorbidities
On-going monitoring
strategies for nonspecific results
High risk population
identification
Statistical results
Table 11.3: Statistical results
N - Valid
108
109
108
107
108
109
108
107
106
108
N - Missing
25
24
25
26
25
24
25
26
27
25
Mean
7.11
7.39
6.84
7.43
7.31
7.80
7.90
7.77
7.75
7.65
Median
8.00
8.00
7.00
8.00
8.00
8.00
8.00
8.00
8.00
8.00
Std. Deviation
2.408
2.194
2.218
1.938
2.021
1.875
1.756
1.871
1.842
1.954
Percentiles - 25
5.25
6.00
5.00
7.00
6.25
7.00
7.00
7.00
7.00
7.00
Percentiles - 50
8.00
8.00
7.00
8.00
8.00
8.00
8.00
8.00
8.00
8.00
Percentiles - 75
9.00
9.00
9.00
9.00
9.00
9.00
9.00
9.00
9.00
9.00
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Figure 11.3: Perceived importance for information to be included in clinical
guidance material
Question 11.4:
If clinical guidance material were to be developed for the TREATMENT of lung
cancer to whom would this information be best targeted?
Table 11.4: Statistical results
Statistical results
Frequency
Percent
General practitioners
96
85.7
Respiratory physicians
85
84.8
General physicians
66
58.9
Anaesthetists
5
4.5
Radiologists
24
21.4
Medical oncologists
90
80.4
Radiation oncologists
89
79.5
Thoracic surgeons
80
71.4
Cardiothoracic surgeons
61
54.5
Consumer material
59
52.7
Nursing and allied health professionals
62
55.4
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Figure 11.4: Health professionals best targeted for treatment related guidance
material
11.4 Open-ended Comment:
1.
Consumers should be characterised as multiple groups—patients, those with
possible symptoms, families, carers.
2.
Palliative care services.
3.
Palliative care physicians—so they have information about latest evidence based
treatments.
4.
Palliative care physicians.
5.
Palliative care.
6.
Psycho-oncologists.
Question 11.5:
Would guidance materal around the evidence on the benefit of multidisciplinary
teams in lung cancer TREATMENT be helpful in improving patient outcomes?
Table 11.5: Statistical results
Statistical results
Frequency
Percent
No
14
9.33
Yes
97
64.67
Not answered
39
26.0
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Statistical results
Frequency
Percent
Total
150
100
Figure 11.5: Patient outcomes improved by guidance material on MDT benefit in
lung cancer treatment
11.5 Open-ended Comment:
1.
It depends on the standard of practice in individual centres.
2.
This is the best way to establish the correct stage and to canvass therapeutic
options.
3.
Am currently researching this very question with our lung mdt and hope to have
presentations at RANZCR and COSA this year.
4.
The evidence of MDT benefit needs to be first generated.
5.
Those clinicians not using multiD aren't likely to change practice.
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Section 12: Improving treatment of lung cancer
Question 12.1:
In your opinion are difficulties accessing MDTs impacting on outcomes of lung
cancer?
Table 12.1: Statistical results
Statistical results
Frequency
Percent
No
40
26.67
Yes
67
44.67
Not answered
43
28.66
Total
150
100
Figure 12.1: Do MDT access difficulties impact on lung cancer outcomes?
Question 12.2:
Do you consider the following health professionals should be part of the MDT to
plan and monitor TREATMENT
Table 12.2: Statistical results
Statistical results
YES
NO
Medical oncologist
100.0
0.0
General practitioners
81.0
19.0
Respiratory physicians
95.3
4.7
Radiation oncologists
100.0
0.0
Palliative care physicians
91.0
9.0
Surgeon
97.0
3.0
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Statistical results
YES
NO
Care coordinator / Lung cancer nurse
98.2
1.8
Allied health professionals
85.0
15.0
Figure 12.2: MDT included health professionals to plan and monitor treatment
12.2 Open-ended Comment:
1.
Pathologists, nuclear medicine specialists.
2.
Data manager.
3.
I am not familiar with multidisc teams in treatment of lung ca.. .only in dx and
planning of rx. Also incl radiologist. psychologist. social work ? Letter to GP +
involve GP by phone for their pts only??
4.
Psycooncologists.
5.
Pathology, radiology & nuclear medicine.
6.
Radiologist—key in diagnosis not only from an imaging/staging point of view but
also tissue biopsy and treatment (i.e. Radiofrequency ablation)
7.
Dietician social worker.
8.
Radiologist.
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9.
The feasibility is the issue of GP and to a certain extent allied health involvement.
10.
GP would be good.
11.
Depending on patient need.
Section 13: Improving the treatment of lung cancer
Question 13.1:
What are some of the reasons you do not access a multidisciplinary team for the
TREATMENT of lung cancer?
Table 13.1: Statistical results
Statistical results
Percent
Frequency
I am not convinced of the benefit of a multidisciplinary
team
3.3
2
The incentive to participate in a multidisciplinary team is
not sufficient
15.0
9
There is no multidisciplinary team in my area
25.0
15
I am unaware of how to access a multidisciplinary team
20.0
12
The distance to travel limits me accessing a
multidisciplinary team
26.7
16
The location of specialists across public and private
sectors challenges the conduct of multidisciplinary team
meetings
55.0
33
The time involved limits me participating in a
multidisciplinary team
33.3
20
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Figure 13.1: Reasons for variation in MDT access for treatment
13.1 Open-ended Comment:
1.
Multidisciplinary pathways for lung cancer including palliative care options.
2.
?Lung cancer hotline for each area that links to MDT.
3.
More lung cancer nurse coordinators who will work effectively within the mdt,
local gp services and in educating the wider public. At present there are 7 lung
cancer nurses in NSW.. .some positions are shared with other tumour groups.
4.
Guidelines are useful but do not cover every unique situation and all variables—
the point where a multi-disciplinary approach is so useful.
5.
Provide individual mentors.
6.
More specialist doctors in regional centres (program not accepting dots).
7.
This information needs to be strongly focused to communities of people with
English as a second language.
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Question 14.1:
If clinical guidance material were to be developed where do you consider that
this would have the greatest impact?
Table 14.1: Statistical results
Statistical results
Early
diagnosis
investigation
s
Diagnosis
Treatment
and staging strategies
MDT
MDT
composition composition
at diagnosis for
treatment
Outcomes
measuremen
t of quality
of lung
cancer care
N - Valid
107
107
106
105
106
106
N - Missing
26
26
27
28
27
27
Mean
7.47
7.53
7.48
6.49
6.62
7.32
Median
8.00
8.00
8.00
7.00
7.00
8.00
Std. Deviation
2.328
2.011
1.858
2.198
2.265
1.983
Percentiles - 25
7.00
6.00
6.00
5.00
5.00
6.00
Percentiles - 50
8.00
8.00
8.00
7.00
7.00
8.00
Percentiles - 75
9.00
9.00
9.00
8.00
8.00
9.00
Figure 14.1: Perceived area of clinical guidelines greatest impact
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Question 14.2:
In your opinion, what factors are likely to have the greatest reduction in
practice variation in lung cancer treatment in Australia?
14.2. Priorities:
PRIORITY
FACTOR
COUNT
Priority 1
General practitioner education and awareness e.g. recognition of symptoms
72
Priority 2
Referral and access to MDTs to assist in diagnosis and tumour staging
65
Priority 3
Guidance material for the use of investigation and diagnosis of lung cancer
52
Priority 4
Greater public awareness of lung cancer, diagnostic strategies and therapies
51
Priority 5
Monitoring of patients with ongoing symptoms when investigations do not confirm lung
cancer
37
Priority 6
Guidelines for MDTs specific to lung cancer to minimise variation
36
Priority 7
Greater access to targeted tumour and staging procedures
26
Priority 8
Improving communication strategies across the public and private sector
21
Priority 9
Increasing awareness of the capacity of chemotherapy and radiotherapy to manage
symptoms and improve quality of life
20
Priority 10
Monitoring of quality indicators of such as time from diagnosis to treatment
16
Priority 11
Better incentives for the private sector to participate in MDTs
15
Priority 12
Promotion of lung cancer specialists in health specialties, such as surgery and oncology
14
Priority 13
Guidelines on appropriateness of surgery
9
Priority 14
Access to information identifying the location of lung cancer specialists
8
Priority 15
Guidelines on appropriateness of chemotherapy
8
Priority 16
Algorithms to calculate co-morbidity risk for surgery and treatment
6
Priority 17
Guidelines on appropriateness of radiotherapy
4
14.2. Additional Recommendations / comments relating to decreasing
treatment variation
1.
We need guidelines for follow up of post op patients from lung cancer as well as
pts having radical treatment.
2.
Wide availability of private health care means patient can choose to go to opinions
they think are right, even when it is not.
3.
Provide videoconf/ teleconf facilities for rural specialist to attend metro meetings if
no meeting in their area. allow GP's to teleconf in just for their pts.
4.
The key impact will be a reference point for legal issues.
5.
The guidelines on diagnosis and treatment are already available. The main
problem in my area is access to services such as diagnostic tests, medical
oncologists, chemotherapy and radiotherapy.
Literature review and national consultation on factors impacting on lung cancer outcomes
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6.
Data and audit most important. Need to document valid reason for any lung
cancer patient NOT being treated according to guidelines.
7.
Having a coordinator of the MDT as a funded position with appropriate
administrative budget and support.
8.
Not sure.
9.
Better equality of healthcare access for those from lower socioeconomic groups &
regional & rural patients.
10.
Need to have the pathway agreed and available and publicised to public, GP and
specialists.
11.
Inclusion of psycho-social and palliative specialists on the multi-disciplinary team.
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Appendix 7: Thematic Analysis from Expert
Participants
System
Themes
Illustrative quotes
Ability to provide and
coordinate lung cancer
services
Need for coordination and
communication and monitoring of
outcomes
"multiple providers, multiple investigations can lead to
delays in diagnosis" (Medical oncologist)
Need to coordinate public and
private health care settings
"inordinate, unnecessary delays occur" (Medical
Oncologist)
Distance from specialist centres
impacts on access
Increasing specialisation increases
the emphasis on specialist centres
Multidisciplinary teams seen as
integral
"a team approach is what is necessary" (Surgeon)
"being able to go to a private hospital fast tracked
[spouse] treatment (Consumer)
"people can just get lost in the system" (Dietician)
"There is a need for a carrot and stick approach [to
monitor and improve outcomes" (Respiratory
Physician)
Navigating the system is
"In order to obtain Medicare reimbursement there
challenging for patients and general
should be demonstration that a physician has accessed
practitioners
a multidisciplinary team" (Medical Oncologist)
"it is a bit hit and miss how quickly you get into the
system" (Care Coordinator)
"Network systems work well to coordinate care"
(Policy)
"Need for systematic follow-up of abnormal chest—
Rays" (Radiologist)
"Up to 48% of the surgery happens in the private
sector" (Policy)
Provider
Themes
Capacity to provide lung General practitioners have minimal
cancer services
exposure to lung cancer
Workforce shortages
Increasing need for specialisation
Perception of greater accessibility
through the private sector
Views of lung cancer management
are not always up to date
Illustrative quotes
"amongst some clinicians there is a perception of
nihilism regarding treatment decisions" (Medical
Oncologist)
"No shortage of surgeons—people have to be prepared
to travel" (Thoracic Surgeon)
"Physicians not switched on to lung cancer" (Medical
Oncologist)
"Comorbidities and age can result in failure to consider
surgery" (Thoracic Surgeon)
"I just don't see lung cancer in my practice and so I
guess I am less switched onto it" (General Practitioner)
"lots of information from non-experts" (Palliative care
physician)
"Options are not always portrayed accurately to the
patient" (Respiratory physician)
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Patient
Themes
Illustrative quotes
Patient
Stigma and shame can impact on
the decision to access treatment
"the first month your world is turned upside down... it
was horrendous" (Consumer)
Health seeking
behaviours and
treatment adherence
Patient co-morbidities influence the "Dealing with the diagnosis was the hardest thing"
decision to treat
(Consumer)
Distance and costs can impact on
accessing treatment
"Patients present too late and sometimes they are
already expecting the answer because they see it as
smoking related" (General Practitioner Aboriginal
Medical Service)
"lung cancer is not a sexy cancer" (Consumer)
"Need for more guidelines and marketing to patients
and families" (Dietician)
"Smoking—it's the first thing they always ask about..
.talk about sticking the knife in and twisting it"
(Consumer)
"The distance has a big impact on patients and their
carers [willingness to access treatment] (Lung cancer
nurse)
"Patients are often frustrated by late diagnosis. and
have heard bad things [from other consumers] about
treatment" (Counsellor)
"Still a lot of racism in the system.it puts people off
getting treatment. people feel shamed" (Aboriginal
Health Worker)
"At 36 you are going to do everything [access
treatment] when you are 70 or 80 you are going to
think differently" (Consumer representative)
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Appendix 8: References
1.
Cancer Australia, A National Cancer Data Strategy for Australia. 2008, Cancer
Australia: Canberra.
2.
Australian Institute of Health and Welfare, Cancer in Australia: an overview,
20Cancer series. Vol. 2007, Canberra: Australian Institute of Health and Welfare.
3.
Tracey, E., et al., Cancer in New South Wales: Incidence and Mortality 202009,
Cancer Institute NSW: Sydney.
4.
AIHW, A.I.o.H.a.W., GRIM (General Record of Incidence and Mortality): Lung
Cancer (ICD-10 C33,34), ed. D.P. Jelfs. 2008, Canberra: AIHW.
5.
Australian Institute of Health and Welfare, et al., Cancer Survival and Prevalence
in Australia: Cancers diagnosed 1982-2004, in Cancer Series. 2008, AIHW:
Canberra.
6.
Cancer Institute NSW, Lung cancer in New South Wales. 2006, Cancer Institute
NSW Sydney.
7.
Anti-Cancer Council of Victoria. Cancer Epidemiology, C., Lung cancer, in Canstat.
2002: Melbourne. p. 1-16.
8.
Youlden, D.R., et al., The International Epidemiology of Lung Cancer:
geographical distribution and secular trends. Journal of Thoracic Oncology, 203: p.
819-10.1097/ JTO.0b013e31818020eb [doi] 01243894-200808000-00004 [pii]
9.
Cancer Council Western Australia, Western Australian Cancer Statistics, 202007,
Cancer Council Western Australia: Perth.
10.
South Australian Cancer Registry. Major Cancers in South Australia 197720Available from: http://www.health.sa.gov.au/pehs/07-major-cancers-7705/cancer-major-sites-77-05.htm. Accessed March 2010
11.
Dalton, M., et al., Cancer in Tasmania: Incidence and Mortality 202009, Menzies
Research Institute and Tasmanian Cancer Registry: Hobart.
12.
Zhang, X., et al., Cancer incidence and mortality, Northern Territory 1991202008, Northern Territory Department of Health and Community Services:
Darwin.
13.
ACT Cancer Registry, A.H., Cancer in the ACT Incidence and Mortality 2009, in
Health Series. 2009, ACT Government: Canberra.
14.
Population Health Research Centre ACT Health, Health Status of Women in the
ACT 2008, ACT Government: Canberra.
15.
South Australian Cancer Registry, Cancer in South Australia 2006 with projections
to 2009: A report on the incidence and mortality patterns of cancer. Cancer Series
Number Twenty Nine. Vol. 2008, Adelaide: South Australian Department of
Health.
Literature review and national consultation on factors impacting on lung cancer outcomes
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16.
Dalton, M., et al., Cancer in Tasmania: 20 year report. 2002, Menzies Research
Institute and Tasmanian Cancer Registry: Hobart.
Literature review and national consultation on factors impacting on lung cancer outcomes
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