Standards of
Service Provision for
Head and Neck Cancer
Patients in New ZealandProvisional
National Head and Neck Cancer
Tumour Standards Working Group
2013
Citation: National Head and Neck Cancer Tumour Standards Working Group. 2013.
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand Provisional.
Wellington: Ministry of Health.
Revised January 2014
Published in December 2013 by the
Ministry of Health
PO Box 5013, Wellington 6145, New Zealand
ISBN 978-0-478-41543-8 (online)
HP 5746
This document is available through the Ministry of Health website: www.health.govt.nz
or from the regional cancer network websites:
www.northerncancernetwork.org.nz
www.midland cancernetwork.org.nz
www.centralcancernetwork.org.nz
www.southerncancernetwork.org.nz
Contents
Introduction ............................................................................................................... 1
Background ..................................................................................................... 1
Objective ......................................................................................................... 3
How the head and neck cancer service standards were developed ................. 3
Equity and Whānau Ora .................................................................................. 4
Summary of the clinical standards for the management of head and neck
cancer services................................................................................................ 6
Standards of service provision pathway ........................................................... 6
Summary of standards..................................................................................... 7
1
Prevention and Early Identification................................................................. 10
Rationale ....................................................................................................... 10
Good practice points ...................................................................................... 11
2
Timely Access to Services ............................................................................. 12
Rationale ....................................................................................................... 12
Good practice points ...................................................................................... 13
3
Referral and Communication ......................................................................... 14
Referral..................................................................................................... 14-15
Rationale .................................................................................................. 14-15
4
Investigation, Diagnosis and Staging ............................................................. 16
Rationale .................................................................................................. 16-21
Good practice points ................................................................................. 16-21
5
Multidisciplinary Care ..................................................................................... 22
Rationale .................................................................................................. 22-26
Good practice points ................................................................................. 22-26
6
Supportive Care............................................................................................. 27
Rationale ....................................................................................................... 27
Good practice points ...................................................................................... 27
7
Care Coordination ......................................................................................... 29
Rationale ....................................................................................................... 29
Good practice points ...................................................................................... 29
8
Treatment ...................................................................................................... 30
Rationale .................................................................................................. 30-33
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
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Good practice points ................................................................................ 30-33
9
Follow-up and Surveillance ........................................................................... 35
Rationale .................................................................................................. 35-37
Good practice points ................................................................................ 35-37
10
Clinical Performance Monitoring and Research ............................................. 39
Rationale .................................................................................................. 39-40
Good practice points ................................................................................ 39-40
Appendix 1: National Head and Neck Cancer Tumour Standards Working
Group Membership........................................................................................ 41
Appendix 2: Glossary ............................................................................................. 43
Appendix 3: References ......................................................................................... 48
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Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
– Provisional
Introduction
Background
For this purposes of this document, the term ‘head and neck cancer’ applies to the
following sites in adults:

mucosa of the head and neck (oral cavity and lip, pharynx, larynx and cervical
oesophagus)

nasal cavity and paranasal sinuses

salivary glands

skin of the head and neck, in the context of high-risk and advanced nonmelanoma skin cancer.
Nationally, there are approximately 520 new cases of cancer of head and neck
mucosal surfaces registered each year (Ministry of Health 2013). In addition, there
are an estimated 200 cases of metastatic non-melanoma skin cancer of the head
and neck registered annually, as well as a smaller number of salivary malignancies
– these are currently not captured separately in the Cancer Registry.
Incidence of head and neck cancer by gender varies with primary cancer site;
incidence rates in men are double the rates in women for oral cavity/pharyngeal
cancers, and triple the rates in women for laryngeal cancer (National Cancer
Institute 2003). The five-year survival rate for patients with head and neck cancer is
approximately 60 percent (Jemal et al 2002; Ries et al 2006; Saman 2012). While
these cancers (excluding skin) represent only 2.5 percent of all cancers (NCCN
2012), they require sophisticated and complex health care services, and the
individual, social, family and economic burden is large.
Traditionally, major aetiological factors in head and neck cancer have been smoking
and alcohol. Cigarette smoking is considered the most important risk factor for head
and neck cancer (Saman 2012). A significant dose–response relationship exists
between alcohol consumption and risk of head and neck cancer (Agudo et al 2006).
Users of both tobacco and alcohol have a 50-fold (or greater) increased risk of
developing head and neck cancer (Maier et al 1992; Rodriguez et al 2004).
While incidence of head and neck cancer is greatest in those over 50, incidence in
young adults is on the rise, most likely attributable to human papillomavirus (HPV)
exposure (Curado and Hashibe 2009; Marur and Forastiere 2008). Viral aetiologies
are also implicated in cancers more common in certain ethnic groups.
Nasopharyngeal cancer is associated with the Epstein-Barr Virus (EBV) as well as
genetic and environmental factors, and is the commonest cancer of any site in
Southern China (Wei and Sham 2005).
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
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1
With each stage of human migration from Southern Asia into Polynesia in the last
5000 years there has been a graduated dilution of aetiological factors and cancer
incidence. Thus the risk of nasopharyngeal carcinoma in New Zealand for Asians,
Pacific Islanders and Māori compared to those of European descent is respectively
eight times, five times and three times (Morton and Benjamin 1989). Pacific
Islanders in New Zealand are also more likely to have smaller primary cancers and
larger nodal metastases than their Asian counterparts (Ianovski et al 2009). As
Asian and Pacific ethnic groups grow at faster rates than any other,1 an increasing
burden of patients with nasopharyngeal carcinoma is expected.
Human papillomavirus has been implicated in the rapid rise in the incidence of
oropharyngeal (tonsil and base of tongue) cancer throughout the western world
(Snijders et al 1992; Mellin et al 2000). This virus is also linked with cervical cancer;
it is postulated that the increase in oropharyngeal cancer is associated with the
sexual revolution and oral sex in western society. These cancers appear in an
earlier age group, and incidence is usually not associated with the traditional risk
factors of smoking and alcohol. Early data indicate that HPV-related tumours are
more responsive to treatment and have a better prognosis than HPV-negative
cancers (Hong et al 2010).
Current unpublished data from the Auckland regional Head and Neck Service
indicate that, excluding cutaneous lesions, oropharyngeal cancer is now the most
common head and neck malignancy; over 75 percent of cases are HPV-positive.
New Zealand currently offers free immunisation for HPV to girls aged 13 and over,
but not to boys. Canada and Australia offer vaccination to girls and boys, in an effort
to gain herd immunity. Expected benefits include a reduction in the incidence of both
cervical cancer in women and oropharyngeal cancer in both sexes.
The head and neck is a common site for non-melanoma skin cancer due to
ultraviolet (UV) skin exposure. Squamous cell carcinoma presents the greatest
challenge, and is largely dealt with in primary care. However, there is a subset of
more aggressive tumours that can be identified histologically and which carry an
increased risk of recurrence and nodal metastases; these require treatment by a
multidisciplinary team (MDT) (Peat et al 2012). In the context of an aging population
and global warming, the incidence of such lesions is rising.
1
2
New Zealand Census data, extracted from website. URL:
www.stats.govt.nz/Census/2006CensusHomePage/QuickStats/quickstats-about-a-subject/cultureand-identity.aspx (accessed 28 August 2013).
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
– Provisional
Studies in New Zealand and overseas have shown that patients with head and neck
cancer generally experience a measurable improvement in quality of life in the first
two to three years following treatment (Morton 2003). Long-term survival has also
been shown to be significantly associated with early quality of life scores in these
patients (Mehanna et al 2005). More recent Auckland research has shown that
patients with head and neck cancer have substantial unmet needs, and that there is
great potential for enhanced quality of life and other benefits for individuals if they
receive adequate support (Cavell et al (in press)).
Head and neck cancer and its treatment may impinge on a patient’s facial
appearance, voice and speech, oral continence, chewing and swallowing, breathing,
hearing and sight. It may also impact on shoulder function. For this reason a
multidisciplinary meeting (MDM) forms the basis of clinical care for head and neck
cancer. The MDM involves specialists in ablative and reconstructive surgery; dental,
oral and maxillofacial surgery; speech-language therapy; dietetics; and psychology,
alongside a nurse specialist. These practitioners confer and interact with patients to
determine optimal individual treatment pathways (BAHNO 2009; NHS Wales 2005).
A recent (unpublished) review of patients requiring major head and neck surgery in
Auckland over a two-year period found that the average patient required two
admissions, and spent a total 30 days in hospital. Because of the relatively low
number of disparate cancers of the head and neck nationally, the requirement for
multidisciplinary care and the large workload associated with inpatient care, a case
can be made for a concentration of services, to consistently achieve optimal
treatment outcomes and cost-effective care.
Objective
Tumour standards for all cancers are being developed as a part of the Ministry of
Health’s ‘Faster Cancer Treatment’ (FCT) programme’s approach to ensuring timely
clinical care for patients with cancer. The standards will promote nationally
coordinated and consistent standards of service provision across New Zealand.
The standards will be the same for all ethnic groups. However, we expect that in
implementing the standards district health boards (DHBs) may need to tailor their
efforts to meet the specific needs of populations with comparatively poorer health
outcomes, such as Māori and Pacific people.
How the head and neck cancer service standards were
developed
These standards were developed by a skilled working group representing key
specialities and interests across the head and neck cancer pathway of care. The
group was chaired by a lead clinician, and had access to expert advisors in key
content areas.
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
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These standards recognise the need for evidence-based practice. Numerous
evidence-based guidelines and standards already exist, so the standards in this
document have largely been developed by referring to established national and
international guidelines in the head and neck cancer stream.
Where no clear evidence was available, expert opinion was obtained through the
National Head and Neck Tumour Standards Working Group and its advisors (see
Appendix 1).
Tumour-specific national standards were first developed for lung cancer in the
Standards of Service Provision for Lung Cancer Patients in New Zealand (National
Lung Cancer Working Group 2011). DHBs have used these standards to make
improvements to service delivery and clinical practice.
Subsequently provisional standards have been developed for ten tumour types:
bowel, breast, gynaecological, lymphoma, melanoma, myeloma, head and neck,
sarcoma, thyroid and upper gastrointestinal.
The Ministry of Health required all tumour standard working groups to:
Maintain a focus on achieving equity and whānau ora when developing
service standards, patient pathways and service frameworks by ensuring an
alignment with the Reducing Inequalities in Health Framework and its
principles (Ministry of Health 2002).
These standards broadly follow the format of the Standards of Service Provision for
Lung Cancer Patients in New Zealand.
Equity and Whānau Ora
The differential health status between Māori and non-Māori is an ongoing challenge
for the health sector (Ministry of Health 2010c). Cancer is an important contributor to
these health inequalities (Blakely et al 2011). Studies have shown that Māori are
less likely to access primary oral health care compared to Pacific people and
Europeans (Ministry of Health 2009). Māori males are twice as likely and Māori
females three times as likely as non-Māori to have a smoking history (Ministry of
Health 2010d).
Health inequities or health disparities are avoidable, unnecessary and unjust
differences in the health of groups of people. In New Zealand, ethnic identity is an
important dimension of health disparities. Cancer is a significant health concern for
Māori, and has a major and disproportionate impact on Māori communities.
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Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
– Provisional
Inequities exist between Māori and non-Māori in exposure to risk and protective
factors for cancer, in incidence and outcomes, and in access to cancer services.
Barriers to health care are recognised as multidimensional, and include health
system and health care factors (eg, institutional values, workforce composition,
service configuration and location), as well as patient factors (eg, socioeconomic
position, transportation and patient values). Addressing these factors requires a
population health approach that takes account of all the influences on health and
how they can be tackled to improve health outcomes.
A Whānau Ora approach to health care recognises the interdependence of people;
health and wellbeing are influenced and affected by the ‘collective’ as well as the
individual. It is important to work with people in their social contexts, and not just
with their physical symptoms.
The outcome of the Whānau Ora approach in health will be improved health
outcomes for family/whānau through quality services that are integrated (across
social sectors and within health), responsive and patient/family/whānau-centred.
In preparing these standards, the Northern Cancer Network’s Māori Leadership
Group provided expert advice to the working group, based on eight principles to
identify and address issues of equity in access, process and outcome. These
principles were specifically: a commitment to mana whenua and Māori communities,
Whānau Ora, health equity, self-determination, indigeneity, ngā kaupapa tuku iho,
whole-of-system responsibility and evidence-based approaches. It is intended that
these principles are weaved through the standards, and support the inclusion of
supporting rationale, good practice points and monitoring requirements.
These standards will address equity for Māori patients with head and neck cancers
in the following ways.

The standards focus on improving access to diagnosis and treatment for all
patients, including Māori and Pacific.

Māori access to cancer services will be monitored and evaluated.

Ethnicity data will be collected on all access measures and the FCT indicators,
and will be used to identify and address disparities.

Good practice points for the standards include health literacy and cultural
competency training for all health professionals involved in patient care.

Information developed or provided to patients and their family will meet Ministry
of Health guidelines (Ministry of Health 2012c).

Māori participation in MDTs and networks will be invited, to develop treatment
plans and care coordination and ensure an effective service delivery model.
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
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5
Summary of the clinical standards for the management of
head and neck cancer services
Format of the standards
Each cluster of standards has a title that summarises the step of the patient journey
or the area on which the standards are focused. This is followed by the standard
itself, which explains the level of performance to be achieved. The rationale section
explains why the standard is considered to be important.
Attached to most of the clusters of standards are good practice points. Good
practice points are supported either by the international literature, the opinion of the
National Head and Neck Cancer Tumour Standards Working Group or the
consensus of feedback from consultation with New Zealand clinicians involved in
providing care to patients with head and neck cancer. Also attached to each cluster
are the requirements for monitoring the individual standards.
Standards of service provision pathway
The head and neck cancer standards are reflected in the following pathway.
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Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
– Provisional
Summary of standards
The standards for the management of head and neck cancer have been divided into
10 clusters:

prevention and early identification

timely access to services

referral and communication

investigation, diagnosis and staging

multidisciplinary care

supportive care

care coordination

treatment

follow-up and surveillance

clinical performance monitoring and research.
The standards are as follows.
Prevention and early identification
Standard 1.1: Risk factors and ‘red alert’ signs of head and neck cancers are clearly
communicated to health care practitioners and the public.
Standard 1.2: People exposed to specific risk factors for head and neck cancer (eg,
smoking, alcohol and UV exposure) are counselled appropriately.
Timely access to services
Standard 2.1: Patients referred urgently with a high suspicion of head and neck
cancer receive their first cancer treatment within 62 days.
Standard 2.2: Patients referred urgently with a high suspicion of head and neck
cancer have their first specialist assessment (FSA) within 14 days.
Standard 2.3: Patients with suspected or confirmed cancer undergo imaging and
reporting within 14 days of the imaging referral being received.
Standard 2.4: Patients with a confirmed diagnosis of head and neck cancer
(including recurrence) receive their first treatment or other management within
31 days of the decision to treat.
Referral and communication
Standard 3.1: Patients with suspected head and neck cancer are referred to
secondary and tertiary care following an agreed referral pathway.
Standard 3.2: Patients’ general practitioners (GPs)/primary referrers and patients
themselves receive communication within seven days of the diagnosis of cancer.
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
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Standard 3.3: General practitioners/primary referrers receive MDM treatment
recommendations within seven days of the MDM. Once treatment has been
completed, GPs/primary referrers receive a report on the treatment (operation note,
radiotherapy course, discharge letter) within seven days.
Standard 3.4: Upon diagnosis, patients are introduced to a contact person and
provided with their written contact details.
Standard 3.5: Patients and their GPs/primary referrers are provided with verbal and
written information about head and neck cancer, diagnostic procedures, treatment
options (including effectiveness and risks), final treatment plan and support services.
Patients are offered further appointments for discussion prior to treatment.
Investigation, diagnosis and staging
Standard 4.1: Imaging investigations follow standardised imaging pathways based
on National Comprehensive Cancer Network and Royal College of Radiologists
Guidelines (NCCN 2012; RCR 2006).
Standard 4.2: Standardised imaging protocols are agreed between the head and
neck MDT at the major tertiary referral centre and the peripheral referral centres.
Standard 4.3: The histology of complex head and neck cancer resection specimens
is reported in a synoptic format.
Standard 4.4: Histological and cytological biopsies are reported within seven days
and resection specimens within 14 days of receiving the specimen (21 days if
decalcification is required).
Standard 4.5: Patients with a provisional histological diagnosis of head and neck
cancer have their diagnosis reviewed and confirmed by a specialist head and neck
pathologist affiliated to a head and neck cancer MDM.
Standard 4.6: Patients with head and neck cancer are staged according to the
American Joint Committee on Cancer (AJCC)’s Tumour, node, metastases (TNM)
staging classification prior to treatment planning.
Multidisciplinary care
Standard 5.1: Patients diagnosed with head and neck cancer (excluding T1, 2 N0
cutaneous) are assessed at a MDM for staging and treatment planning;
recommendations are clearly documented in the patient’s medical records.
Standard 5.2: The MDM has appropriate access to a range of head and neck cancer
clinical expertise.
Standard 5.3: Patients receiving cancer treatment that involves or affects the oral
cavity are seen by an oral health consultant prior to treatment.
Standard 5.4: The head and neck cancer MDM deals with a minimum of 80 new
cases per annum.
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Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
– Provisional
Supportive care
Standard 6.1: Patients with head and neck cancer and their family/whānau have
equitable and coordinated access to appropriate medical, allied health and
supportive care services, in accordance with Guidance for Improving Supportive
Care for Adults with Cancer in New Zealand (Ministry of Health 2010a).
Care coordination
Standard 7.1: Patients with head and neck cancer have access to a head and neck
clinical nurse specialist or other health professional who is a member of the MDM to
help coordinate all aspects of their care.
Treatment
Standard 8.1: Patients receive treatment according to an agreed and documented
guideline or policy, or in a formal clinical trial. Where there is deviation from the
guideline, rationale for treatment decisions is documented.
Standard 8.2: Morbidity and mortality related to cancer treatment are monitored and
presented at regular meetings relevant to the different specialities.
Standard 8.3: Patients are offered early access to palliative care services when
there are complex symptom control issues, when curative treatment cannot be
offered or if curative treatment is declined.
Follow-up and surveillance
Standard 9.1: Patients with head and neck cancer have access to a care coordinator
and to a range of experienced rehabilitation professionals throughout the course of
their cancer journey, in conjunction with their GP.
Standard 9.2: Follow-up plans include clinical review by appropriate members of the
MDT, working in conjunction with the patient, their family/whānau and their GP.
Clinical performance monitoring and research
Standard 10.1: Prospective data relating to head and neck cancer beyond the fields
required by the Cancer Registry, including treatment data, are reported to existing
and planned national repositories using nationally agreed data set fields.
Standard 10.2: Patients with head and neck cancer are offered the opportunity to
participate in appropriate research projects and clinical trials where these are
available.
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
- Provisional
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1
Prevention and Early Identification
Standard 1.1
Risk factors and ‘red alert’ signs of head and neck cancers are
clearly communicated to health care practitioners and the
public.
Standard 1.2
People exposed to specific risk factors for head and neck
cancer (eg, smoking, alcohol and UV exposure) are counselled
appropriately.
Rationale
The evidence-based risk factors associated with head and neck cancers include
tobacco use, alcohol, betel nut chewing, sunlight, immune defects, dietary factors
and infectious factors (eg, HPV and candidosis). These factors are dose-related,
and worsened by repeated exposures. Head and neck cancers are also moderately
associated with social and economic deprivation, which can be a barrier to access
and use of health care services.
Smoking cessation has been shown to reduce the risk of cancer by 50 percent in
three to five years. Ten years of smoking cessation gives ex-smokers a risk
approaching that of non-smokers. Reducing both alcohol and smoking reduces
second tumours in people with head and neck cancers.
Tumour stage at diagnosis is the most important prognostic factor; efforts must be
made to minimise delays in diagnosis and treatment.
Knowledge gaps in awareness of head and neck cancers and associated risk
factors have been identified in both medical and dental primary care clinicians, and
can be a delaying factor. Training to improve the confidence and competence of
health care professionals to interpret patients’ signs and symptoms and a simple,
fail-safe, fast-track referral system for patients with suspected head and neck cancer
is a priority.
Good health outcomes depend on a range of factors, including information,
intervention, relationships and communication. A lack of health literacy has been
recognised as a prohibitor to engagement by at-risk families/whānau. Health literacy
is a key component to clinical best practice and improved clinical outcomes for
Māori.
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Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
– Provisional
Good practice points
1.1
Patients are informed that exposure to solar radiation, smoking and alcohol
may predispose them to head and neck cancer.
1.2
Patients and their family/whānau are provided with oral health advice by
general dental practitioners, oral hygienists and dental therapists.
1.3
Education programmes on the recognition and management of suspicious
lesions of the head and neck region are developed for primary care clinicians
and undergraduate medical students, and are available as an electronic
resource, supplemented with seminars and workshops, to enable easy and
repeated access.
1.4
Primary care clinicians screen for known risk factors for head and neck
cancer, and intervene when they identify at-risk patients.
1.5
Clinicians responsible for communicating with patients and their
family/whānau complete health literacy training.
1.6
Information developed for or provided to patients and their family/whānau
meets Ministry of Health guidelines (Ministry of Health 2012c).
Monitoring requirements
MR1A
Audit national public health campaigns for identified risk factors.
MR1B
Record numbers of identified population at increased risk enrolled in
surveillance programmes.
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
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2
Timely Access to Services
Standard 2.1
Patients referred urgently with a high suspicion of head and
neck cancer receive their first cancer treatment within 62 days.
Standard 2.2
Patients referred urgently with a high suspicion of head and
neck cancer have their FSA within 14 days.
Standard 2.3
Patients with suspected or confirmed cancer undergo imaging
and reporting within 14 days of the imaging referral being
received.
Standard 2.4
Patients with a confirmed diagnosis of head and neck cancer
(including recurrence), receive their first treatment or other
management within 31 days of the decision to treat.
Rationale
Timely and equitable access to quality cancer management is important to support
good health outcomes for New Zealanders and to reduce inequalities.
Key components of successful cancer management include early recognition and
reporting of symptoms, expertise in identifying patients requiring prompt referral and
rapid access to investigations and treatment.
A suspicion of cancer or cancer diagnosis is very stressful for patients and
family/whānau. It is important that patients and family/whānau know how quickly
patients can receive treatment. Long waiting times may affect local control and
survival benefit for some cancer patients, and can result in delayed symptom
management for palliative patients.
The standards in this cluster ensure that:

patients receive quality well-coordinated clinical care

delays are avoided as much as possible.
Imaging is important in the diagnosis and staging of cancer. Waits for imaging
investigations may cause significant delays before clinical diagnosis is confirmed
and appropriate treatment can be instituted (NHS Wales 2005).
Shorter waits for cancer treatments is a government health target. The FCT
indicators (Standards 2.1, 2.2 and 2.4) adopt a timed patient pathway approach
across surgical and non-surgical cancer treatment, and apply to inpatients,
outpatients and day patients.
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Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
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Good practice points
2.1
In view of the rapid growth of most head and neck cancers, the 62 days from
referral to treatment is regarded as a maximum waiting time. Most patients
commence their treatment earlier.
2.2
Services make every attempt to shorten waiting times, for example by giving
urgent priority (less than 14 days) to referrals from GPs, requesting imaging
while a patient is waiting for endoscopy or booking operating theatre time
before specific details of surgery have been decided upon.
2.3
General practitioners refer to secondary care services within one working day
of receiving a diagnostic result indicating head and neck cancer.
2.4
Referrals are made electronically, or over the telephone.
2.5
A designated clinician takes responsibility for triaging suspected head and
neck cancer referrals.
2.6
The referral pathway and urgent referral criteria are easily accessible to
primary care services/other referring agents, ideally electronically.
2.7
Imaging reports are received by the referrer within two working days of the
examination being performed.
2.8
Reports are distributed electronically.
2.9
Computed tomography (CT) scans of the neck and chest are performed as
part of initial staging investigations.
2.10 All patients likely to receive head and neck cancer treatment that involves or
affects the oral cavity receive an orthopantomogram (OPG) prior to the MDM.
Monitoring requirements
MR2A
Track FCT indicators.
MR2B
Audit imaging waiting times and reporting times for radiology.
MR2C
Collect and analyse ethnicity data on all access targets and indicators.
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
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3
Referral and Communication
Referral
Standard 3.1
Patients with suspected head and neck cancer are referred to
secondary and tertiary care following an agreed referral
pathway.
Standard 3.2
Patients’ GPs/primary referrers and patients themselves receive
communication within seven days of the diagnosis of cancer.
Standard 3.3
General practitioners/primary referrers receive MDM treatment
recommendations within seven days of the MDM. Once
treatment has been completed, GPs/primary referrers receive a
report on the treatment (operation note, radiotherapy course,
discharge letter) within seven days.
Rationale
The purpose of the referral pathway is to ensure that all patients with suspected
head and neck cancer are referred to the most appropriate health care services, and
that appropriate information in a standardised form is available in the referral.
Time spent waiting for a diagnosis is likely to be an anxious time for patients. Timely
and synchronous information provided to patients and primary referrers will:

reduce the potential for increased demand on primary care services related to
anxiety while waiting for a diagnosis

facilitate clinical discussion between primary referrers and patients after
diagnosis.
The GP/primary referrer is an important resource for the patient, and part of the
extended treatment team.
Good practice points
3.1
Referrals raise the possibility of malignancy, to help with prioritisation.
3.2
Proforma-based referral is ideally electronic.
3.3
Centres develop written information on their clinic’s structure and function.
3.4
Communication occurs between primary, secondary and tertiary care
throughout patients’ management and care.
3.5
Information provided to GPs/primary referrers gives an indication of prognosis.
Monitoring requirements
14
MR3A
Provide evidence of clear and accessible referral pathways.
MR3B
Audit the percentage of head and neck cancer referrals received through the
appropriate pathway and on the appropriate proforma.
MR3C
Audit the percentage of diagnostic information provided within seven days.
MR3D
Audit information sent to multidisciplinary clinic patients at their first visit.
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
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Communication
Standard 3.4
Upon diagnosis, patients are introduced to a contact person and
provided with their written contact details.
Standard 3.5
Patients and their GPs/primary referrers are provided with
verbal and written information about head and neck cancer,
diagnostic procedures, treatment options (including
effectiveness and risks), final treatment plan and support
services. Patients are offered further appointments for
discussion prior to treatment.
Rationale
Attendance at the multidisciplinary clinic is harrowing for most patients and their family/
whānau, and many leave with further questions. Verbal information may be poorly
retained by patients at a time of high anxiety, high symptom load or multiple
appointments. A single contact person assigned to a particular patient can answer many
of that patient’s questions, and arrange contact with other team members as required.
Cancer treatments can have significant immediate and long-term implications for
function and quality of life. Patients need to be made aware of these likely effects in
order to make decisions about or between treatments.
Good practice points
3.6
Contact people are identified in patient records.
3.7
Prior to attendance at a clinic, patients receive written information on:

the time and place of each visit

the nature and function of the clinic

recommended family/whānau support at each visit.
3.8
Written information is available that is at an appropriate reading age for the
patient and their family/whānau; alternatives are considered for patients who
have difficulty reading.
3.9
Written information is routinely sent out with notifications of appointments.
3.10 Cancer centres consider instituting a buddy system that introduces former
head and neck cancer patients to newly diagnosed patients on request.
3.11 Cancer services develop and implement a did-not-attend (DNA) reduction and
follow-up protocol that particularly focuses on reducing inequalities for Māori.
3.12 Staff responsible for engagement with patients and/or their families/whānau
undertake and complete cultural competency training.
Monitoring requirements
MR3E
Audit multidisciplinary clinics’ documentation.
MR3F
Provide evidence of culturally appropriate patient and family/whānau satisfaction
surveys, and audit complaints processes.
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
- Provisional
15
4
Investigation, Diagnosis and Staging
Standard 4.1
Imaging investigations follow standardised imaging pathways
based on National Comprehensive Cancer Network and Royal
College of Radiologists Guidelines (NCCN 2012; RCR 2006).
Rationale
Successful treatment of head and neck cancer requires accurate diagnosis and
staging.
Good practice points
4.1
Computed tomography imaging of the neck is performed as the initial imaging
modality for assessment of head and neck cancer, as well as screening for
cervical lymphadenopathy (NCCN 2012).
4.2
Computed tomography is an important imaging modality for assessing bony
margins and bony erosion (RCR 2006).
4.3
Staging CT scan of the chest is performed at the same time that CT scan of
the neck is performed.
4.4
Magnetic resonance imaging (MRI) is the preferred imaging modality for the
assessment of tumours of the nasopharynx, paranasal sinuses, oral cavity,
oropharynx, hypopharynx and salivary glands (RCR 2006).
4.5
Magnetic resonance imaging is the optimal imaging modality used for
assessing skull base invasion, soft tissue intracranial extension and perineural
tumour spread (RCR 2006).
4.6
Indications for positron emission tomography and computed tomography
(PET-CT) follow the Royal College of Physicians’ and Royal College of
Radiologists’ evidence-based guidelines (RCP and RCR 2012).
Monitoring requirements
16
MR4A
Ensure that radiology departments demonstrate written evidence of
standardised imaging pathways.
MR4B
Audit the appropriateness of clinical indications for PET-CT to be conducted by
the radiology department and variance committee.
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
– Provisional
Standard 4.2
Standardised imaging protocols are agreed between the head
and neck MDT at the major tertiary referral centre and the
peripheral referral centres.
Rationale
Successful treatment of head and neck cancer requires accurate diagnosis and
staging.
Good practice points
4.7
Computed tomography of the larynx for assessment of glottic tumours entails
fine slice axial reconstructions parallel to the laryngeal ventricle (expert
opinion).
4.8
Magnetic resonance imaging scans entail a high-resolution, fine slice, small
field of view imaging study centred on the region of the primary tumour, for
optimal assessment of local tumour extension. The skull base is included for
those primary lesions in close proximity to the skull base, and if perineural
tumour is a possibility (expert opinion).
Monitoring requirements
MR4C
Provide evidence of standardised imaging protocols for staging head and neck
cancer.
MR4D
Ensure that MDMs provide evidence of appropriate radiological imaging.
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
- Provisional
17
Standard 4.3
The histology of complex head and neck cancer resection
specimens is reported in a synoptic format.
Rationale
Treatment decisions require a minimum data set of diagnostic and prognostic
features relevant to the tumour being treated. Synoptic reporting facilitates concise
and complete recording of this information.
Good practice points
4.9
For the purposes of this standard, ‘complex’ resection specimens include all
mucosal, bone or soft tissue cancers, salivary gland (non-lymphoma) cancers
and metastatic cutaneous malignancy to parotid and neck nodes.
4.10 Pathology reporting of common head and neck cancer resection specimens
follows an agreed proforma chosen by or developed in consultation with the
regional head and neck MDT (see, for example, RCPA (nd)).
4.11 Pathologists reporting cutaneous squamous cell carcinomas of the head and
neck are aware of the current AJCC cancer staging system for these tumours.
4.12 Invasive squamous cell carcinomas that have any of the high-risk features
listed in the AJCC cancer staging system are pathologically staged using the
AJCC system.
Monitoring requirements
18
MR4E
Ensure that pathology departments keep a register of synoptic reports.
MR4F
Audit MDM pathology reviews.
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
– Provisional
Standard 4.4
Histological and cytological biopsies are reported within seven
days and resection specimens within 14 days of receiving the
specimen (21 days if decalcification is required).
Rationale
Head and neck cancers have the capacity to interfere with vital functions such as
respiration, speech and swallowing, or cause significant aesthetic deformity, if
diagnosis and treatment are delayed.
Good practice points
4.13 Clinicians provide relevant clinical history and a clinical or differential
diagnosis on the specimen request form, to assist in formulating a correct
pathologic diagnosis.
4.14 A photographic record of gross specimens, with orientation markers and a
ruler, is supplied, to assist in correlating clinical, radiological and pathologic
findings.
4.15 All new cases receive a pathologically confirmed diagnosis of cancer
(preferably a histological diagnosis) prior to treatment planning. In some
circumstances a cytological diagnosis may be acceptable.
Monitoring requirements
MR4G
Ensure that pathology departments keep a register of specimens received and
reported.
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
- Provisional
19
Standard 4.5
Patients with a provisional histological diagnosis of head and
neck cancer have their diagnosis reviewed and confirmed by a
specialist head and neck pathologist affiliated to a head and
neck cancer MDM.
Rationale
The head and neck is a high-risk site for diagnostic discrepancies because of the
diverse range of cancers that present in this region, many of which are relatively
uncommon or have variant, prognostically important subtypes.
Good practice points
4.16 Where there is major discordance of opinion between reporting and reviewing
pathologists, discussion takes place. Where the difference cannot be resolved,
an independent expert opinion is sought, nationally or internationally, before
treatment is commenced.
Monitoring requirements
MR4H
20
Ensure that MDMs record who has reviewed the pathology.
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
– Provisional
Standard 4.6
Patients with head and neck cancer are staged according to the
AJCC’s TNM staging classification prior to treatment planning.
Rationale
Staging at diagnosis predicts survival rates and guides appropriate management of
patients.
Good practice points
4.17 All patients undergo clinical review and staging at an MDM attended by at
least two head and neck surgeons, one medical oncologist, one radiation
oncologist, a radiologist and a pathologist.
4.18 Staging is based on a combination of clinical findings, endoscopy findings,
imaging findings and pathology results.
4.19 Images are reported by radiologists with special expertise in head and neck
radiology (BAHNO 2009).
4.20 All radiological investigations are reported prior to commencement of
treatment (BAHNO 2009).
Monitoring requirements
MR4I
Ensure that MDMs record all patient staging prior to treatment.
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
- Provisional
21
5
Multidisciplinary Care
Standard 5.1
Patients diagnosed with head and neck cancer (excluding T1,
2 N0 cutaneous) are assessed at an MDM for staging and
treatment planning; recommendations are clearly documented
in the patient’s medical records.
Rationale
International evidence shows that multidisciplinary care is a key aspect to providing
best-practice treatment and care for patients with cancer. Multidisciplinary care
involves a team approach to treatment planning and care provision along the
complete patient cancer pathway.
Cancer MDMs are part of the philosophy of multidisciplinary care. Effective MDMs
result in positive outcomes for patients receiving the care, for health professionals
involved in providing the care and for health services overall. Benefits include
improved treatment planning, improved equity of patient outcomes, more patients
being offered the opportunity to enter into relevant clinical trials, improved continuity
of care and less service duplication, improved coordination of services, improved
communication between care providers and more efficient use of time and
resources.
Good practice points
22
5.1
Ideally, MDMs are held weekly, or at least fortnightly, to minimise delays in
initiation of patient treatment and patient anxiety.
5.2
Treatment plans are agreed and documented prior to the initiation of
treatment, noting the reasons for any variation from standard practice. Plans
are available electronically, and are accessible to other members of the health
care team.
5.3
All referrals to a MDM include demographic data; provisional staging
information; and data on clinical factors such as current symptoms,
performance status, weight loss, medical co-morbidity and clinical findings
(including through endoscopy, relevant imaging and pathological diagnosis) to
maximise the chance of making appropriate clinical decisions.
5.4
Treating clinicians record reasons for not following a treatment plan
recommended by the MDT.
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
– Provisional
5.5
Patients undergoing treatment for cancers of the oral cavity/pharynx/larynx are
assessed by a speech-language therapist and dietitian prior to treatment.
5.6
Malnutrition screening is undertaken with a validated tool.
5.7
In order to meet Māori needs and reduce inequalities, cancer care services
are focused on Māori priorities. This may involve the reorientation of existing
services or the development of new services or initiatives, as well as
strengthening the role of effective service delivery models. Some specific
areas of good practice include:
5.8

involving Māori expertise and the range of relevant Māori services and
providers in MDTs and networks

prioritising Māori in the piloting of developments or initiatives in service
delivery

developing tools (such as Whānau Ora assessments) to meet the needs of
Māori, which can be used to inform patient treatment plans and care
coordination

involving Māori patients and their family/whānau in MDMs to discuss
treatment options and plans.
All Māori patients and their family/whānau are offered access to Whānau Ora
assessments and cultural support services.
Monitoring requirements
MR5A
Audit MDM documentation.
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
- Provisional
23
Standard 5.2
The MDM has appropriate access to a range of head and neck
cancer clinical expertise.
Rationale
The head and neck is a complex area; treatment of head and neck cancers requires
expertise from a diverse group of highly trained personnel.
Good practice points
5.9
The MDM has access to the following expertise:
 an otolaryngologist/head and neck surgeon
 a plastic and reconstructive surgeon
 a maxillofacial surgeon
 a maxillofacial prosthodontist
 an oral health consultant
 a radiation oncologist
 a medical oncologist
 a clinical nurse specialist
 a head and neck cancer coordinator
 a speech-language therapist
 a dietitian
 a pain specialist
 a psychologist
 a palliative care specialist
 a radiologist with expertise in head and neck oncology
 a pathologist with expertise in head and neck oncology
 gastrostomy services
 a neurosurgeon
 an adolescent and young adult key worker.
5.10 Speech-language therapists and dietitians attend MDMs, and are available
when required throughout patients’ treatment.
5.11 Referrers to the MDM are supported by their hospitals to attend MDMs either
virtually or physically.
5.12 Patients receiving chemotherapy with cisplatin undergo audiometry prior to
treatment.
5.13 Patients undergo psychometric testing for quality of life, anxiety, depression
and coping skills prior to treatment.
Monitoring requirements
24
MR5B
Audit MDM attendance.
MR5C
Audit access criteria for different services.
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
– Provisional
Standard 5.3
Patients receiving cancer treatment that involves or affects the
oral cavity are seen by an oral health consultant prior to
treatment.
Rationale
Oral health and function are a major determinant of long-term quality of life.
Good practice points
5.14 Oral assessment requires an appropriate chair and appropriate lighting and
equipment.
5.15 Patients receiving cancer treatment that affects the oral cavity receive an OPG
prior to the MDM.
5.16 Prior to treatment, the oral health consultant:

examines the patient and takes appropriate radiographs

eliminates potential oral infection and prepares the mouth for subsequent
cancer treatment

educates the patient on oral care, and implements preventive oral care

formulates an initial plan for future oral and maxillofacial rehabilitation.
5.17 All pre-radiotherapy dental extractions are completed more than 14 days prior
to the commencement of radiotherapy.
Monitoring requirements
MR5D
Audit the percentage of patients whose cancer treatment involves or affects the
oral cavity and who are seen by an oral health consultant prior to treatment.
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
- Provisional
25
Standard 5.4
The head and neck cancer MDM deals with a minimum of
80 new cases per annum.
Rationale
The range of head and neck cancer sites is large. The MDM utilises a wide range of
specialist resources; a minimum number of patients need to be seen and treated per
year to maintain individual specialists’ expertise. There is well documented evidence
that outcomes are better where the MDM sees a greater number of patients per
annum.
Good practice points
5.18 Regional MDMs determine whether it is best to operate according to a ‘hub
and spoke’ model, with a videoconferencing facility to facilitate the process.
Monitoring requirements
MR5E
26
Audit MDM documentation.
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
– Provisional
6
Supportive Care
Standard 6.1
Patients with head and neck cancer and their family/whānau
have equitable and coordinated access to appropriate medical,
allied health and supportive care services, in accordance with
Guidance for Improving Supportive Care for Adults with Cancer
in New Zealand (Ministry of Health 2010a).
Rationale
The psychological, social, physical and spiritual needs of cancer patients are many
and varied. These needs can to a large extent be met by allied health care teams in
hospitals and in the community. Adults with cancer enjoy improved quality of life
following needs assessment and provision of supportive care.
Non-government organisations, including the Cancer Society, perform an important
role in providing supportive care.
Good practice points
6.1
Patients are regularly assessed for their supportive care and psychosocial
needs.
6.2
A clearly recorded discussion of preferred priorities of care (advance care
directives and planning) takes place when cure is not possible. Wherever
possible, this is not left until the terminal stages of the illness.
6.3
All nursing staff working with head and neck cancer patients undergo clinical
training in the care of patients undergoing complex surgery, including free flap
reconstruction, and in the management of the airway, tracheostomy, complex
wound care, nutrition and oral care.
6.4
Nurses working in outpatient clinics have skills in the continuing management
of the airway, complex wounds, tracheostomy and oral care for patients
discharged after surgery and/or radiation therapy.
6.5
All head and neck cancer patients have access to a social worker and an oral
hygienist.
6.6
Patients who travel long distances to regional treatment services have access
to information on the Ministry of Health’s National Travel Assistance Scheme
(Ministry of Health 2006).
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
- Provisional
27
6.7
Patients are routinely screened throughout their cancer experience for distress
using validated assessment tools, and consideration is given to key risk
factors.
6.8
A structured referral pathway is in place, based on sources and degrees of
distress, so that patients can quickly be referred to appropriate services.
Monitoring requirements
28
MR6A
Provide evidence of culturally appropriate patient and family/whānau satisfaction
surveys, and audit complaints processes.
MR6B
Collect and analyse ethnicity data on treatment, timeliness and access targets
and indicators.
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
– Provisional
7
Care Coordination
Standard 7.1
Patients with head and neck cancer have access to a head and
neck clinical nurse specialist or other health professional who is
a member of the MDM to help coordinate all aspects of their
care.
Rationale
The cancer journey is complex, and it is not uncommon for a patient to be seen by
many specialists within and across multiple DHBs and across the public and private
sectors.
‘Care coordination’ refers to a system or a role primarily intended to expedite patient
access to services and resources, improve communication and the transfer of
information between services, address patients’ information needs and improve
continuity of care throughout the cancer continuum.
Patients and caregivers should be able to access care coordination through a single
point of contact through the various stages of the cancer journey.
Good practice points
7.1
Regional cancer centres employ a dedicated contact person, to provide
patients and caregivers with a single point of contact throughout their care.
7.2
Patients are kept informed, in a manner appropriate to their individual needs,
about the processes involved in the diagnosis, treatment and management of
their cancer.
7.3
Cancer-related information is free and easily accessible to the patient, their
family/whānau and the public. Such information meets the needs of diverse
audiences, is written in everyday language, and is accurate, unbiased and
based on the best available evidence.
7.4
Patients with English as a second language have access to an interpreter as
required.
Monitoring requirements
MR7A
Audit database records and clinical notes on contact points between identified
care coordinators and patients.
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
- Provisional
29
8
Treatment
Standard 8.1
Patients receive treatment according to an agreed and
documented guideline or policy, or in a formal clinical trial.
Where there is deviation from the guideline, rationale for
treatment decisions is documented.
Rationale
For all treatment modalities, the results are likely to be optimal when the treatment
delivered is within the spectrum of accepted treatment approaches within a formal
agreed policy or guideline. It is important that treatment policies are in line with
accepted New Zealand and international protocols and guidelines, or are conducted
within the context of a clinical trial. Palliative treatments are normally individualised,
but should conform as closely as possible to agreed policies.
Good practice points
8.1
Treatment protocols are reviewed and updated periodically.
8.2
Appropriate support service providers (such as oral health practitioners,
speech-language therapists, nurse specialists and dietitians) are available
perioperatively.
8.3
Prophylactic placement of an enteral feeding tube is considered for patients
whose treatment is likely to severely compromise adequate nutrition and thus
treatment delivery.
Surgery
30
8.4
Surgery is performed by surgeons with qualifications and experience in head
and neck surgery.
8.5
Operations are performed in hospitals able to manage tracheostomies,
provide anaesthetic and intensive care support for the expected level of
surgery complexity and provide after-hours medical cover.
8.6
Airway integrity is considered in every major head and neck cancer case.
8.7
Surgeons consult with patients and their family/whānau undergoing surgery for
cancer about final disposal of tissue or body parts surgically removed.
8.8
Patients, particularly Māori and Pacific patients, have the option of retaining
tissue postoperatively.
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
– Provisional
Radiotherapy
8.9
Three-dimensional conformal radiotherapy is the minimum requirement for
radical radiotherapy plans.
8.10 All radiotherapy treatment centres meet current Radiation Oncology Practice
Standards set by the Tripartite Initiative (Tripartite Committee 2011).
8.11 All radiotherapy treatment centres have quality assurance protocols to meet
the requirements of the New Zealand Radiation Protection Act 1965.
8.12 If multiple plans or multiple radiotherapy modalities of treatment are used in a
certain area, all reasonable measures are taken to visualise the total dose
distribution on a treatment planning system prior to the radiotherapy plan
approval.
8.13 If a department does not have an intensity modulated radiation treatment
(IMRT) programme, it is able to refer patients to another centre for IMRT
treatment.
8.14 Where IMRT is used, radiotherapy plans are subjected to robust quality
assurance verification.
8.15 Periodic (preferably daily) verification of patient positioning and treatment
volumes takes place, to detect and correct for any change in patient position
and tumour size/position.
Systemic therapy
8.16 Systemic therapy is administered in centres with appropriate policies in place
covering generic issues pertinent to systemic therapy, including: staff grading,
training and competencies in prescribing, preparation and dispensing;
administration; disposal of waste; and spillage.
8.17 Detailed written systemic therapy protocols are used for the management of
cancer in all sites, covering regimens and their indication; drug doses and
scheduling; pre- and post-treatment investigations; and dose modifications.
Monitoring requirements
MR8A
Audit MDMs’ documentation of treatment protocols for all tumour sites and
stages, and any treatment outside the MDM protocol.
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
- Provisional
31
Standard 8.2
Morbidity and mortality related to cancer treatment are
monitored and presented at regular meetings relevant to the
different specialities.
Rationale
All treatment modalities can produce significant toxicities. Some of these are acute,
while others only become obvious months or years after completion of the
treatment. Documentation is therefore important. Periodic audit allows for problem
identification and service improvement.
Good practice points
8.18 Audit includes key performance indicators, and running totals are kept for
each month and year.
8.19 Audit takes place in a professional and collegial manner.
8.20 All departmental personnel attend audit meetings.
8.21 Audit findings and recommendations are documented.
8.22 Acute and late toxicities are recorded, preferably using a standard toxicity
scoring system (eg, the Radiation Therapy Oncology Group’s scoring system
for radiation toxicities (Radiation Therapy Oncology Group 2013) and the
Common Terminology Criteria for Adverse Events scoring system for
chemotherapy toxicities (US Department of Health and Human Services,
National Institutes of Health and National Cancer Institute 2009)).
Monitoring requirements
MR8B
32
Audit documentation of morbidity and mortality meetings.
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
– Provisional
Standard 8.3
Patients are offered access to palliative care services when
there are complex symptom control issues, when curative
treatment cannot be offered or if curative treatment is declined.
Rationale
A diagnosis of cancer and its subsequent treatment can have a devastating impact
on the quality of a person’s life, as well as on the lives of families/whānau and other
carers. Patients may face new fears and uncertainties, and may have to undergo
unpleasant and debilitating treatments. Patients should expect to be offered optimal
symptom control and psychological, social and spiritual support. They may want to
be assured that their families/whānau and carers will receive support during illness
and, if they die, following bereavement.
Palliative care is the care of people who are dying from active, progressive diseases
or other conditions that are not responsive to curative treatment. Palliative care
embraces the physical, social, emotional and spiritual elements of wellbeing –
tinana, whānau, hinengaro and wairua – and enhances a person’s quality of life
while they are dying. Palliative care also supports the bereaved family/whānau
(Ministry of Health 2001).
The objective of palliative care is to alleviate suffering and provide compassionate
care for the patient and their family/whānau. Competence in palliative medicine and
sensitivity to people’s beliefs and values are two key prerequisites for a provider of
palliative care. Clinicians should form a care plan for palliative patients with a view to
ensuring that pain and other potentially distressing symptoms are relieved, dignity is
preserved and there is engagement with family/whānau (Ministry of Health 2001).
Good practice points
8.23 Screening for palliative care needs, comprehensive assessment and care
planning are undertaken at appropriate intervals to meet the needs and
wishes of the patient and their family/whānau.
8.24 Access to palliative care, decision-making and care planning are based on a
respect for the uniqueness of the patient and their family/whānau, independent
of their current health status, diagnosis, age, gender, cultural background or
geography. Patients’ and their family/whānau’s needs and wishes guide
decision-making and care planning.
8.25 All practitioners have knowledge and skills in managing patients from a
palliative care perspective.
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
- Provisional
33
8.26 All practitioners are able to incorporate a palliative care approach as required,
and recognise when they should offer referral to a specialist palliative care
provider.
8.27 Patients and their families/whānau are offered palliative care options and
information in plain language that is targeted to their particular needs; this is
incorporated into their care plans.
8.28 Providers ensure that patients and their family/whānau have easy access to a
range of free, culturally and educationally appropriate, high-quality information
materials in a variety of formats about cancer and palliative care services.
8.29 Systems are in place to ensure the views of patients and their family/whānau
are taken into account when developing and evaluating cancer and palliative
care services. All such services support patients to participate in their own
care by offering a range of informal opportunities, such as self-help activities
and peer support schemes within community settings.
8.30 Formal mechanisms are in place to ensure that patients, their carers and
family/whānau have access to bereavement care, information and support
services.
8.31 Practitioners recognise dying patients in a timely manner, and discuss
advance care planning and end-of-life goals of care with patients and their
family/whānau. End-of-life care pathways are implemented in hospitals,
hospices and other health care settings.
Monitoring requirements
MR8C
34
Audit proposed plans of care, onward referrals and follow-up responsibilities
recorded at MDM reviews and in patient notes.
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
– Provisional
9
Follow-up and Surveillance
Standard 9.1
Patients with head and neck cancer have access to a care
coordinator and to a range of experienced rehabilitation
professionals throughout the course of their cancer journey, in
conjunction with their GP.
Rationale
Patients with head and neck cancer are a heterogeneous group likely to present
with complex or long-term needs. Early access to rehabilitation services is
associated with better outcomes, and can prevent secondary disability.
Good practice points
9.1
Rehabilitation professionals may include the following:

a clinical nurse specialist

an oral health team

a technician able to support maxillofacial rehabilitation

a dietitian

an occupational therapist

a physiotherapist

a psychologist

a social worker

a speech-language therapist.
9.2
Centres develop access criteria and pathways for referral to all rehabilitation
services.
9.3
Baseline measurements are made, to assist in the monitoring of functional
outcomes.
9.4
A dietitian reviews all patients who have received radiation therapy to the head
and neck no less than fortnightly for at least six weeks after treatment.
9.5
Nutrition intervention for patients who have received radiation therapy to the
head and neck continues for at least three months after treatment.
9.6
The majority of patients receive follow-up in a clinic setting where same-day,
same-hospital access to a dietitian, a head and neck nurse specialist, a
speech-language therapist and a psychologist is available.
9.7
Patients are encouraged to undertake physical activity after treatment, for the
significant impact it can have on quality of life, recurrence and a sense of
control and wellbeing.
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
- Provisional
35
9.8
On discharge following cancer treatment, patients receive appropriate oral
care, including:

advice on the need for regular, ongoing, professional oral care

advice regarding future oral and/or maxillofacial prosthesis care

advice regarding future dental extractions

assessment of their circumstances and functional needs
and other health care professionals are advised regarding the patient’s oral
and/or maxillofacial prosthesis care needs.
9.9
Where possible, a patient returns to their own dentist for continuing care. If
private dental care is not a realistic option, and where finance and facilities are
available, appropriate, affordable, sustainable oral care and maxillofacial
rehabilitation are offered.
Monitoring requirements
36
MR9A
Audit patients’ access to appropriate rehabilitation expertise.
MR9B
Audit care coordination and links between the MDT, GPs, patients and
family/whānau.
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
– Provisional
Standard 9.2
Follow-up plans include clinical review by appropriate members
of the MDT, working in conjunction with the patient, their
family/whānau and their GP.
Rationale
Patients with head and neck cancer are at risk of:

persistence of disease after treatment

local and regional recurrence

new disease.
Persistent, recurrent or new disease may present to any member of the MDT as
symptoms or functional deterioration.
Early detection of and intervention for new problems leads to better outcomes.
Good practice points
9.10 A follow-up plan is formulated for each patient according to a national
programme and nationally agreed guidelines (under development).
9.11 Patients have easy access to oncological review initiated by any health
professional, the patient themselves or the patient’s family/whānau.
9.12 Components of survivorship care include:

prevention of recurrence and new cancers

surveillance for cancer spread, recurrence and secondary cancers

management of medical and psychological late effects

intervention for consequences of cancer and treatment

coordination of care between primary and specialist services.
Lifestyle factors
9.13 Patients and their family/whānau receive information that enables them to
receive support from the Cancer Society and specialist interest groups (such
as the Lost Cord Club, providing support for people who have had a
laryngectomy).
9.14 Patients are informed that smoking increases the risk of post-treatment
complications and may decrease the effectiveness of some anti-cancer
treatments.
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
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37
9.15 Patients and family/whānau are provided with smoking cessation advice in
keeping with the ‘ABC’ (Ask, Brief advice, Cessation Support) approach, as
set out in the Ministry of Health’s guidance on smoking cessation (Ministry of
Health 2007).
9.16 Patients are referred to quit smoking treatment services such as Quitline and
Aukati KaiPaipa where appropriate.2
9.17 Patients are provided with information on problem drinking and referred to
social agencies for advice and treatment (such as Community Alcohol and
Drug Services or the Salvation Army) where appropriate.
9.18 Patients are referred to a psychologist where appropriate, to promote more
effective coping strategies and improve self-esteem and mood.
Monitoring requirements
MR9C
Audit written follow-up information provided following agreed surveillance
protocols.
MR9D
Audit organisational compliance with surveillance protocol.
MR9E
Audit the percentage of patients who receive appropriate follow-up dental care.
MR9F
Keep records of referral pathways for appropriate support services.
MR9G
Keep records of the provision of appropriate information to patients and
family/whānau.
2
38
More information is available at www.health.govt.nz/our-work/preventative-health-wellness/tobaccocontrol.
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
– Provisional
10 Clinical Performance Monitoring and Research
Standard 10.1
Prospective data relating to head and neck cancer beyond the
fields required by the Cancer Registry, including treatment data,
are reported to existing and planned national repositories using
nationally agreed data set fields.
Rationale
The aim of this standard is to construct a database for head and neck cancer to
integrate demographic, diagnostic, treatment, outcomes and other relevant
information to contribute to service and clinical performance monitoring and
research to improve patient outcomes.
There is currently no national cancer database other than the New Zealand Cancer
Registry, so information on patients with head and neck cancer should be collected
systematically on local or regional databases to support multidisciplinary cancer
care and to allow future local, regional and national collation and analysis.
The National Head and Neck Cancer Tumour Standards Working Group is
developing a data set to help with service and clinical monitoring. Individual MDTs
are responsible for collecting and managing information relating to patients with
head and neck cancer.
It is expected that many data fields will overlap with those required by the New
Zealand Cancer Registry; care should be taken to ensure consistency of information
between the datasets.
Good practice points
10.1.1 Patients are informed that their information is being recorded in a head and
neck cancer database to help the MDT monitor and evaluate access to, and
the effectiveness of, services.
10.1.2 Data collection is consistent with the National Cancer Core Data Definitions
Interim Standard (IT Health Board 2011).
10.1.3 Head and neck cancer centres consider employing a data manager to
facilitate accurate and complete data collection.
10.1.4 Clinicians have ready access to other specialties’ ‘stand-alone’ records, to
allow better and more efficient patient management.
Monitoring requirements
MR10A
Provide evidence of reporting of required patient data sets to national data
repositories (as available) at the agreed frequency.
MR10B
Ensure that records of referrals to the MDM are entered into the local head and
neck cancer database.
MR10C
Record the number of audits undertaken each year using local, regional or
national head and neck cancer MDM data.
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
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39
Standard 10.2
Patients with head and neck cancer are offered the opportunity
to participate in appropriate research projects and clinical trials
where these are available.
Rationale
The outcomes of research are diverse, and can include survival benefits for patients
through more effective early diagnosis and management and improved coordination
of post-intervention services to reduce or manage morbidity. The availability of data
is currently poor due to the lack of robust audit processes and low rate of
recruitment into clinical trials.
Good practice points
10.2.1 All referrals to an MDM are entered into a local head and neck cancer
database and reported to national data repositories, to maximise the chance
of use of information for clinical research. Analysis of this data set is
undertaken at least annually.
10.2.2 Data include details of pre-intervention and post-intervention treatment and
management.
10.2.3 Annual follow-up data (including negative outcomes) are gathered from
hospital services and medical and dental GPs for the first five years of a
patient’s follow-up, and subsequently at five-yearly intervals thereafter. Data
are preferably reported using an electronic record template, and are
accessible to other members of the health care team.
10.2.4 Employing organisations value and facilitate the participation of clinicians in
research and audit, and demonstrate this by allocating time and
research/administration support.
Monitoring requirements
MR10D
40
Provide records of the number and proportion of patients offered entry into
research projects each year, and of the number of those patients who are
actually recruited.
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
– Provisional
Appendix 1:
National Head and Neck Cancer Tumour Standards
Working Group Membership
Chair
Mr Nick McIvor, ORL/Head and Neck Surgeon, Auckland DHB
Members
Mr Robert Allison, ORL/Head and Neck Surgeon, Canterbury DHB
Sandy Cavell, ORL Health Psychologist, Counties Manukau DHB
Noelle Farrell, Clinical Nurse Specialist/Navigator, Auckland DHB
Dr Geeta Gala, Public Health Physician, Northern Cancer Network
Dr Bob Gibbs, Specialist Dental Surgeon, Auckland DHB
Dr Tony Goh, Consultant Radiologist, Canterbury DHB
Mr Derek Goodisson, Maxillofacial Surgeon, Hawke’s Bay DHB
Mr Mark Izzard, ORL/Head and Neck Surgeon, Auckland DHB
Shirley James, Professional Leader, Speech-Language Therapy, Hutt Valley DHB
Dr Michael Jameson, Consultant Medical Oncologist, Waikato DHB
Prof Tom Kardos, Professor of Oral Biology and Oral Pathology, University of Otago
Dr Nikolay Nedev, Consultant Radiation Oncologist, MidCentral DHB
Prof Anita Nolan, Professor of Oral Medicine/Oral Medicine Specialist, Auckland
University of Technology
Dr Kate O’Connor, Consultant Radiologist, Auckland DHB
Paul Rigby, Dietitian, Hutt Valley DHB
Brian Sheppard, Consumer Representative, Central Cancer Network
Mr Swee Tan, Director of Surgery, Hutt Valley DHB
Ex officio members
Dr Robyn Haisman-Welsh, Chief Dental Officer, Ministry of Health
Emma Maddren, Project Manager, Northern Cancer Network
Deirdre Maxwell, Network Manager, Northern Cancer Network
Dr Richard Sullivan, Network Clinical Director, Northern Cancer Network
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
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41
Advisors
Dr Chris Boberg, General Practitioner, MelNet/Royal New Zealand College of
General Practitioners
Mr Jonathan Burge, Plastic and Reconstructive Surgeon, Counties Manukau DHB
Jeanette Gillibrand, Speech-Language Therapist , Auckland DHB
Mr Richard Harman, Consultant Surgical Oncologist, Waitemata DHB
Mr Stanley Loo, Plastic Reconstructive and Cosmetic Surgeon, Counties Manukau
DHB
Prof Randall Morton, ORL/Head and Neck Surgeon, Counties Manukau DHB
Esther Ong, Speech-Language Therapist, Auckland DHB
42
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
– Provisional
Appendix 2:
Glossary
Advance care planning
A process of discussion and shared planning for future health
care
Allied health
professional
One of the following groups of health care workers:
physiotherapists, occupational therapists, dietitians, orthoptists,
paramedics, prosthetists/orthotists and speech and language
therapists
Best practice
A method or approach that is accepted by consensus to be the
most effective way of doing something, in the circumstances;
may or may not be based on evidence
Cancer journey
The individual and personal experience of a person with
cancer throughout the course of their illness
Cancer Networks
Cancer Networks were formed in response to national policy to
drive change and improve cancer services for the population in
specific areas. There are four regional networks: Northern,
Midland, Central and Southern
Carcinoma
Cancer of the lining tissue that covers all the body organs.
Most cancers are carcinomas
Care coordination
Entails the organising and planning of cancer care, who
patients and family/whānau see, when they see them and how
this can be made as easy as possible. It may also include
identifying who patients and family/whānau need to help them
on the cancer pathway
Chemotherapy
The use of drugs that kill cancer cells, or prevent or slow their
growth (also see systemic therapy)
Clinical trial
An experiment for a new treatment
Computed tomography
(CT)
A medical imaging technique using X-rays to create crosssectional slices through the body part being examined
Confirmed diagnosis
(used in FCT indicators)
The preferred basis of a confirmed cancer diagnosis is
pathological, noting that for a small number of patients cancer
diagnosis will be based on diagnostic imaging findings
Curative
Aiming to cure a disease
Decision to treat (used
in FCT indicators)
A decision to begin a patient’s treatment plan or other
management plan, following discussion between the patient
and treating clinician
DHB
District Health Board
End-of-life care
The provision of supportive and palliative care in response to
the assessed needs of the patient and family/whānau during
the end-of-life phase
Family/whānau
Can include extended family/whānau, partners, friends,
advocates, guardians and other representatives
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
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44
Faster Cancer
Treatment (FCT)
A Ministry of Health programme that will improve services by
standardising care pathways and timeliness of services for
cancer patients throughout New Zealand
Faster Cancer
Treatment indicators
Measures of cancer care collected through DHB reporting of
timeframes within which patients with a high suspicion of
cancer access services. The indicators are internationally
established and provide goals for DHBs to achieve over time
First specialist
assessment (FSA)
Face-to-face contact (including telemedicine) between a
patient and a registered medical practitioner or nurse
practitioner for the purposes of first assessment for their
condition for that specialty
First treatment (used in
FCT indicators)
The treatment or other management that attempts to begin the
patient’s treatment, including palliative care
GP
General practitioner
Health equality/equity
Absence of unnecessary, avoidable and unjust differences in
health (Ministry of Health 2002)
Health
inequality/inequity
Differences in health that are unnecessary, avoidable or unjust
(Ministry of Health 2002)
High suspicion of
cancer (used in FCT
indicators)
Where a patient presents with clinical features typical of
cancer, or has less typical signs and symptoms but the
clinician suspects that there is a high probability of cancer
Histological
Relating to the study of cells and tissue on the microscopic
level
Hospice
Hospice is not only a building; it is a philosophy of care. The
goal of hospice care is to help people with life-limiting and lifethreatening conditions make the most of their lives by providing
high-quality palliative and supportive care
Intensity modulated
radiation treatment
(IMRT)
Intensity modulated radiation therapy (IMRT) is a complex
treatment technique that allows healthy tissue to be spared
whilst delivering an optimal radiation dose to the tumour
Lesion
An area of abnormal tissue
Magnetic resonance
imaging (MRI)
A non-invasive method of imaging, which allows the form and
metabolism of tissues and organs to be visualised (also known
as nuclear magnetic resonance)
Medical oncologist
A doctor who treats cancer patients through the use of
chemotherapy and, for some tumours, immunotherapy
Medical oncology
The specialist treatment of cancer patients through the use of
chemotherapy and, for some tumours, immunotherapy
Metastases
Cancerous tumours in any part of the body that have spread
from the original (primary) origin. Also known as ‘secondaries’
Morbidity
The state of being diseased
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
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Mortality
Either (a) the condition of being subject to death or (b) the
death rate, which reflects the number of deaths per unit of
population in any specific region, age group, disease or other
classification, usually expressed as deaths per 1000, 10,000 or
100,000
Multidisciplinary
meeting (MDM)
A deliberate, regular, face-to-face meeting (which may be
through videoconference) to facilitate prospective
multidisciplinary discussion of options for patients’ treatment
and care by a range of health professionals who are experts in
different specialties. ‘Prospective’ treatment and care planning
makes recommendations in real time, with an initial focus on
the patient’s primary treatment. Multidisciplinary meetings
entail a holistic approach to the treatment and care of patients
Multidisciplinary team
(MDT)
A group of specialists in a given disease area. The MDT meets
regularly to plan aspects of patient treatment. Individual patient
cases might be discussed at an MDM, to best plan approach to
treatments
National Health Index
(NHI) number
A unique identifier for New Zealand health care users
Oncology
The study of the biological, physical and chemical features of
cancers, and of the causes and treatment of cancers
Otorhinolaryngology
(ORL)
The branch of medicine and surgery that specialises in of the
diagnosis and treatment of disorders of the head and neck
Orthopantomogram
(OPG)
A panoramic scanning dental X-ray of the upper and lower jaw.
It shows a two-dimensional view of a half-circle from ear to ear
Palliative
Anything that serves to alleviate symptoms due to an
underlying cancer but is not expected to cure it
Palliative care
Active, holistic care of patients with advanced, progressive
illness that may no longer be curable. The aim is to achieve the
best quality of life for patients and their families/whānau. Many
aspects of palliative care are also applicable in earlier stages
of the cancer journey in association with other treatments
Pathologist
A doctor who examines cells and identifies them. The
pathologist can tell where a cell comes from in the body and
whether it is normal or a cancer cell. If it is a cancer cell, the
pathologist can often tell what type of body cell the cancer
developed from. In a hospital practically all the diagnostic tests
performed with material removed from the body are evaluated
or performed by a pathologist
Pathology
A branch of medicine concerned with disease; especially its
structure and its functional effects on the body
Patient pathway
The individual and personal experience of a person with
cancer throughout the course of their illness; the patient
journey
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
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46
Positron emission
tomography and
computed tomography
(PET-CT)
An advanced imaging technique combining an injected
material (18 Fluorine) which is taken up by cancer cells and a
CT scan
Primary care
Primary-level health services provided by a range of health
workers, including GPs and nurses
Quality assurance
All the planned and systematic activities implemented within
the quality system, and demonstrated as needed
Radiation oncologist
A person who is registered as a medical practitioner by the
relevant medical board, is a fellow of the Royal Australian and
New Zealand College of Radiologists or equivalent and is
licensed to prescribe radiation therapy
Radiologist
A doctor who specialises in creating and interpreting pictures
of areas inside the body using X-rays and other specialised
imaging techniques. An interventional radiologist specialises in
the use of imaging techniques for treatment; for example
catheter insertion for abscess drainage
Radiology
The use of radiation (such as X-rays, ultrasound and magnetic
resonance) to create images of the body for diagnosis
Radiotherapy (radiation
treatment)
The use of ionising radiation, usually X-rays or gamma rays, to
kill cancer cells and treat tumours
Recurrence
The return, reappearance or metastasis of cancer (of the same
histology) after a disease-free period
Referred urgently (used
in FCT indicators)
Describes urgent referral of a patient to a specialist because
he or she presents with clinical features indicating high
suspicion of cancer
Squamous cell
carcinoma
A cancer of a type of epithelial cell, the squamous cell. These
cells are the main part of the epidermis of the skin, and this
cancer is one of the major forms of skin cancer. However,
squamous cells also occur in the lining of the digestive tract,
lungs, and other areas of the body, and SCC occurs as a form
of cancer in diverse tissues, including the lips, mouth,
esophagus, urinary bladder, prostate, lung, vagina, and cervix,
among others. Despite sharing the name squamous cell
carcinoma, the SCCs of different body sites can show
tremendous differences in their presenting symptoms, natural
history, prognosis, and response to treatment
Stage
The extent of a cancer; especially whether the disease has
spread from the original site to other parts of the body
Staging
Usually refers to the Tumour, node, metastasis system for
grading tumours by the American Joint Committee on Cancer
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
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Supportive care
Supportive care helps a patient and their family/whānau to
cope with their condition and treatment – from pre-diagnosis
through the process of diagnosis and treatment to cure,
continuing illness or death, and into bereavement. It helps the
patient to maximise the benefits of treatment and to live as well
as possible with the effects of their disease
Synoptic report
A standardised proforma for reporting of cancer
Systemic therapy
Treatment using substances that travel through the
bloodstream, reaching and affecting cells all over the body
Tertiary
Third level. Relating to medical treatment provided at a
specialist institution
Toxicity
Refers to the undesirable and harmful side-effects of a drug
Whānau
Māori term for a person’s immediate family or extended family
group. In the modern context, sometimes used to include
people without kinship ties
Whānau Ora
An inclusive interagency approach to providing health and
social services to build the capacity of New Zealand families. It
empowers family/whānau as a whole, rather than focusing
separately on individual family members
X-ray
A photographic or digital image of the internal organs or bones
produced by the use of ionising radiation
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
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47
Appendix 3:
References
Development of the head and neck cancer standards was informed by key national
and regional documents. Those documents that most directly influenced the
development of the standards are listed below:
BAHNO. 2009. BAHNO Standards 2009. London: British Association of Head and Neck
Oncologists.
Central Cancer Network. 2010. Imaging Guidelines in Cancer Management. Palmerston
North: Central Cancer Network.
Edge SB, Byrd DR, Compton CC, et al (eds). 2010. AJCC Cancer Staging Manual (7th
edition). New York: Springer.
Hospice New Zealand. 2012. Standards for Palliative Care: Quality review programme and
guide. Wellington: Hospice New Zealand.
IT Health Board. 2011. National Cancer Core Data Definitions, Interim Standard, HISO
10038.3. Wellington: IT Health Board.
Ministry of Health. 2002. Reducing Inequalities in Health. Wellington: Ministry of Health.
Ministry of Health. 2010a. Guidance for Improving Supportive Care for Adults with Cancer in
New Zealand. Wellington: Ministry of Health.
Ministry of Health. 2011b. Targeting Shorter Waits for Cancer Treatment. Wellington:
Ministry of Health.
Ministry of Health. 2012a. Guidance for Implementing High-Quality Multidisciplinary
Meetings: Achieving best practice cancer care. Wellington: Ministry of Health.
National Lung Cancer Working Group. 2011. Standards of Service Provision for Lung
Cancer Patients in New Zealand. Wellington: Ministry of Health.
NCCN. 2012a. NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) – Head
and Neck Cancers. Version 1. Fort Washington: National Comprehensive Cancer Network
(member access only).
NCCN. 2012b. NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) –
Palliative Care. Fort Washington: National Comprehensive Cancer Network (member access
only).
NHS Wales. 2005. National Standards for Head and Neck Cancer Services 2005. Cardiff:
NHS Wales.
NICE. 2004. Improving Supportive and Palliative Care for Adults with Cancer. London:
National Institute for Clinical Excellence.
Northern Cancer Network. 2011. Regional Cancer Care Coordination Model Project.
Auckland: Northern Cancer Network.
Palliative Care Australia. 2005. Standards for Providing Quality Palliative Care for all
Australians. Canberra: Palliative Care Australia.
RCP and RCR. 2012. Evidence-based indications for the use of PET-CT in the United
Kingdom. London: Royal College of Physicians and Royal College of Radiologists.
48
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
– Provisional
Introduction
Agudo A, Bonet C, Travier N, et al. 2012. Impact of cigarette smoking on cancer risk in the
European prospective investigation into cancer and nutrition study. Journal of Clinical
Oncology 30(36): 4550–7.
BAHNO. 2009. BAHNO Standards 2009. London: British Association of Head and Neck
Oncologists.
Blakely T, Shaw C, Atkinson J, et al. 2011. Social inequalities or inequities in cancer
incidence? Repeated census-cancer cohort studies, New Zealand, 1981–1986 to
2001–2004. Cancer Causes and Control 22(9): 1307–18.
BPAC. 2006. Providing Palliative Care to Māori (Bulletin). Dunedin: Best Practice Advocacy
Centre New Zealand.
Cavell SF, Donkin L, Morton RP, et al. (In press.) Predictors of Benefit Finding in Head and
Neck Cancer Patients.
Curado MP, Hashibe M. 2009. Recent changes in the epidemiology of head and neck
cancer. Current Opinion in Oncology 21: 194–200.
Harwood M. 2010. Rehabilitation and indigenous peoples: the Māori experience. Disability
and Rehabilitation 32(12): 972–7.
Hill S, Sarfati D, Robson B, et al. 2012. Indigenous inequalities in cancer: what role for health
care? ANZ Journal of Surgery 83(1–2): 36–41.
Hong AM, Dobbins TA, Lee CS, et al. 2010. Human papillomavirus predicts outcome in
oropharyngeal cancer in patients treated primarily with surgery or radiation therapy. British
Journal of Cancer 103(10): 1510–7.
Ianovski I, Izzard M, Plank LD, et al. 2009. Nasopharyngeal carcinoma: differences in
presentation between different ethnicities in the New Zealand setting. ANZ Journal of
Surgery 80(4): 254–7.
Jemal A, Thomas A, Murray T, et al. 2002. Cancer Statistics, 2002. CA: A Cancer Journal for
Clinicians 52: 23–47.
Maier H, Dietz A, Gewelke U, et al. 1992. Tobacco and alcohol and the risk of head and
neck cancer. Clinical Investigator 70: 320–7.
Marur S, Forastiere AA. 2008. Head and neck cancer: changing epidemiology, diagnosis,
and treatment. Mayo Clinic Proceedings 83: 489–501.
Mehanna HM, Morton RP, West TM. 2005. Does quality of life predict long-term survival in
head and neck cancer patients? Archives of Otolaryngology 132: 27–31.
Mellin H, Friesland S, Lewensohn R, et al. 2000. Human papillomavirus (HPV) DNA in
tonsillar cancer: clinical correlates, risk of relapse, and survival. International Journal of
Cancer 89: 300–4.
Ministry of Health. 2001. The New Zealand Palliative Care Strategy. Wellington: Ministry of
Health.
Ministry of Health. 2002. Reducing Inequalities in Health. Wellington: Ministry of Health.
Ministry of Health. 2005. Access to Cancer Services for Māori. Wellington: Ministry of Health.
Ministry of Health. 2009. Our Oral Health: Key findings of the 2009 New Zealand Oral Health
Survey. Wellington: Ministry Health.
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
- Provisional
49
Ministry of Health. 2010b. Kōrero Mārama: Health Literacy and Māori. Wellington: Ministry of
Health.
Ministry of Health. 2010c. Tatau Kahukura Māori Health Chart Book 2010 (2nd edition).
Wellington: Ministry of Health.
Ministry of Health. 2010d. Tobacco Use in New Zealand: Key findings from the 2009 New
Zealand Tobacco Use Survey. Wellington: Ministry of Health.
Ministry of Health. 2012c. Rauemi Atawhai: A guide to developing health education
resources in New Zealand. Wellington: Ministry of Health.
Ministry of Health. 2013. Cancer: New Registrations and Deaths 2010. Wellington: Ministry
of Health.
Ministry of Health. (nd). Cancer data and stats. URL: www.health.govt.nz/nz-healthstatistics/health-statistics-and-data-sets/cancer-data-and-stats (accessed 29 August 2013).
Ministry of Social Development. 2010. Whānau Ora: Report of the Taskforce on WhānauCentred Initiatives. Wellington: Ministry of Social Development.
Morton RP. 2003. Studies in the Quality-Of-Life of Head and Neck Cancer Patients. Results
of a Two-year Longitudinal Study and a Comparative Cross-sectional Cross-cultural Survey.
Laryngoscope 113: 1091–1103.
Morton RP, Benjamin CS. 1989. Nasopharyngeal carcinoma, salted fish, and Polynesians
(letter). Lancet 2: 1210–11.
National Cancer Institute. 2003. Cancer Statistics Review 1973–1999. Bethesda: National
Cancer Institute.
National Lung Cancer Working Group. 2011. Standards of Service Provision for Lung
Cancer Patients in New Zealand. Wellington: Ministry of Health.
NHS Wales. 2005. National Standards for Head and Neck Cancer Services 2005. Cardiff:
NHS Wales.
Peat B, Insull P, Ayers R. 2012. Risk stratification for metastasis from cutaneous squamous
cell carcinoma of the head and neck. ANZ Journal of Surgery 82: 230–3.
Ries LA, Melbert D, Krapcho M, et al (eds). 2006. SEER Cancer Statistics Review,
1975–2004. Bethesda: National Cancer Institute.
Robson B, Harris R (eds). 2007. Hauora: Māori Standards of Health IV. A study of the years
2000–2005. Wellington: Te Rōpū Rangahau Hauora a Eru Pōmare.
Rodriguez T, Altieri A, Chatenoud L, et al. 2004. Risk factors for oral and pharyngeal cancer
in young adults. Oral Oncology 40: 207–13.
Saman DM. 2012. A review of the epidemiology of oral and pharyngeal carcinoma: update.
Head and Neck Oncology 4: 1–7.
Signal L, Martin J, Cram F, et al. 2008. The Health Equity Assessment Tool: A User’s Guide.
Wellington: Ministry of Health.
Snijders PJF, Cromme FV, van den Brule AJC, et al. 1992. Prevalence and expression of
human papillomavirus in tonsillar carcinomas, indicating a possible viral etiology.
International Journal of Cancer 52: 845–50.
Wei WI, Sham JS. 2005. Nasopharyngeal carcinoma. Lancet 365: 2041–56.
50
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
– Provisional
Prevention and early identification
Gomez I, Warnakulasuriya S, Varela-Centelles PI, et al. 2010. Is early diagnosis of oral
cancer a feasible objective? Who is to blame for diagnostic delay? Oral Diseases
16: 333–42.
Ministry of Health. 2012c. Rauemi Atawhai: A guide to developing health education
resources in New Zealand. Wellington: Ministry of Health.
WHO Collaborating Centre for Oral Cancer and Pre-cancer. Guidelines on risk factors,
prevention, targeted screening, diagnosis and referrals in relation to oral cancer. Geneva:
World Health Organization Collaborating Centre for Oral Cancer and Pre-cancer.
Znaor A, Brennan P, Gajalakshmi V, et al. 2003. Independent and combined effects of
tobacco smoking, chewing and alcohol drinking on the risk of oral, pharyngeal and
oesophageal cancers in Indian men. International Journal of Cancer 105(5): 681–6.
Timely access to services
COSA. 2011. Evidence Based Practice Guidelines for the Nutritional Management of Adult
Patients with Head and Neck Cancer. Sydney: Clinical Oncological Society of Australia.
Ministry of Health. 2011a. Radiation Oncology Prioritisation Guidelines. URL: www.
midlandcancernetwork.org.nz/file/fileid/44264 (accessed 29 August 2013).
Ministry of Health. 2011b. Targeting Shorter Waits for Cancer Treatment. Wellington:
Ministry of Health.
Ministry of Health. 2012b. Medical Oncology Prioritisation Criteria. URL:
www.nsfl.health.govt.nz/apps/nsfl.nsf/pagesmh/401 (accessed 29 August 2013).
National Lung Cancer Working Group. 2011. Standards of Service Provision for Lung
Cancer Patients in New Zealand. Wellington: Ministry of Health.
NHS Wales. 2005. National Standards for Head and Neck Cancer Services 2005. Cardiff:
NHS Wales.
NICE. 2004. Guidance on Cancer Services: Improving Outcomes in Head and Neck Cancers
– The Manual. London: National Institute for Clinical Excellence.
Referral and communication
Edwards A, Elwyn G (eds). 2007. Shared Decision-Making in Health Care: Achieving
evidence-based patient choice (2nd edition). London: Oxford University Press.
Gomez I, Warnakulasuriya S, Varela-Centelles PI, et al. 2010. Is early diagnosis of oral
cancer a feasible objective? Who is to blame for diagnostic delay? Oral Diseases
16: 333–42.
Johnson A, Sandford J. 2005. Written and verbal information versus verbal information only
for patients being discharged from acute hospital settings to home: systematic review. Health
Education Research 20(4): 423–9.
NICE. 2004. Guidance on Cancer Services: Improving Outcomes in Head and Neck Cancers
– The Manual. London: National Institute for Clinical Excellence.
Ong LM, Dehaes JC, Hoos AM, et al. 1995. Doctor-patient communication: a review of the
literature. Social Science and Medicine 40(7): 903–18.
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
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Investigation, diagnosis and staging
American Head and Neck Society. (nd). Management of Cancer of the Head and Neck
Imaging: General Guidelines. URL: www.ahns.info/resources/intro/imaging_guidelines
Badoual C, Righini C, Barry B, et al. 2012. Pre-therapeutic histological and cytological
assessment in head and neck squamous cell carcinomas. French Society of
Otorhinolaryngology Guidelines – 2012. European Annals of Otorhinolaryngology, Head and
Neck Diseases 129: 319–26.
BAHNO. 2009. BAHNO Standards 2009. London: British Association of Head and Neck
Oncologists.
Devaney KO, Rinaldo AF. 2010. Pathologic diagnosis in head and neck practice: how fast is
fast enough? European Archives in Otorhinolaryngology 267: 167–9.
Edge SB, Byrd DR, Compton CC, et al (eds). 2010. AJCC Cancer Staging Manual
(7th edition). New York: Springer.
Ellis DW. 2011. Surgical pathology reporting at the crossroads: beyond synoptic reporting.
Pathology 43(5): 404–9.
Friedland PL, Bozic B, Dewar J, et al. 2011. Impact of multidisciplinary team management in
head and neck cancer patients. British Journal of Cancer 104: 1246–8.
King B, Corry J. 2009. Pathology reporting in head and neck cancer – Snapshot of current
status. Head & Neck 31: 227–31.
Kronz JD, Westra WH. 2005. The role of second opinion in the management of lesions of the
head and neck. Current Opinion in Otolaryngology Head Neck Surgery 13: 81–4.
Lueck N, Jensen C, Cohen MB, et al. 2009. Mandatory second opinion in cytopathology.
Cancer Cytopathology 117: 82–91.
Nakhleh RE. 2011. Quality in surgical pathology communication and reporting. Archives of
Pathology and Laboratory Medicine 135: 1394–7.
NCCN. 2012a. NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) – Head
and Neck Cancers. Version 1. Fort Washington: National Comprehensive Cancer Network
(member access only).
NHS Wales. 2005. National Standards for Head and Neck Cancer Services 2005. Cardiff:
NHS Wales.
NZGG. 2012. Positron Emission Tomography and Cancer Diagnosis. Wellington: New
Zealand Guidelines Group.
RCP and RCR. 2012. Evidence-based indications for the use of PET-CT in the United
Kingdom. London: Royal College of Physicians and Royal College of Radiologists.
RCPA. (nd). Oral Cancer Histopathology Reporting Proforma. URL:
www.rcpa.edu.au/static/File/Asset%20library/public%20documents/Publications/StructuredR
eporting/Proforma%20for%20Oral%20v1.pdf (accessed 28 August 2013).
RCR. 2006. Recommendations for Cross-Sectional Imaging in Cancer Management.
London: Royal College of Radiologists.
Ruby SG. 2000. Clinician interpretation of pathology reports: Confusion or comprehension?
Archives of Pathology and Laboratory Medicine 124: 943–44.
Takes RP, Rinaldo A, Silver CE, et al. 2010. Future of the TNM classification and staging
system in head and neck cancer. Head & Neck 32: 1693–1711.
52
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
– Provisional
Tripartite Committee. 2011. Radiation Oncology Practice Standards: A Tripartite Initiative.
Sydney: Royal Australian and New Zealand College of Radiologists, Australian Institute of
Radiography and Australasian College of Physical Scientists and Engineers in Medicine.
Wheless SA, McKinney KA, Zanation AM. 2010. A prospective study of the clinical impact of
a multidisciplinary head and neck tumor board. Otolaryngology Head Neck Surgery
143(5): 650–4.
Yoo J, Walker-Dilks C, Henderson S. 2009. PET Imaging in Head and Neck Cancer:
Recommendations. Toronto: Cancer Care Ontario.
Multidisciplinary care
BAHNO. 2009. BAHNO Standards 2009. London: British Association of Head and Neck
Oncologists.
Central Cancer Network. 2008. Multidisciplinary Meeting Framework. Palmerston North:
Central Cancer Network.
COSA. 2011. Evidence Based Practice Guidelines for the Nutritional Management of Adult
Patients with Head and Neck Cancer. Sydney: Clinical Oncological Society of Australia.
Joshi VK. 2010. Dental treatment planning and management for the mouth cancer patient.
Oral Oncology 46: 475–9.
NHS National Cancer Action Team. 2010. The Characteristics of an Effective
Multidisciplinary Team. London: NHS National Cancer Action Team.
NHS Wales. 2005. National Standards for Head and Neck Cancer Services 2005. Cardiff:
NHS Wales.
Royal College of Surgeons of England, British Society for Disability and Oral Health. 2012.
The Oral Management of Oncology Patients Requiring Radiotherapy, Chemotherapy and/or
Bone Marrow Transplantation: Clinical Guidelines. 2012 revision. London: Royal College of
Surgeons of England, British Society for Disability and Oral Health.
Supportive care
Ministry of Health. 2006. The National Travel Assistance Scheme: Your Guide for Claiming
Travel Assistance: Brochure. URL: www.health.govt.nz/publication/national-travelassistance-scheme-your-guide-claiming-travel-assistance-brochure (accessed 14 August
2013).
Care coordination
Greenberg A, Angus H, Sullivan T, et al. 2005. Development of a set of strategy-based,
system-level cancer care performance indicators in Ontario, Canada. International Journal of
Quality in Health Care 17: 107–14.
NICE. 2004. Guidance on Cancer Services: Improving Outcomes in Head and Neck Cancers
– The Manual. London: National Institute of Clinical Excellence.
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
- Provisional
53
Treatment
BAHNO. 2009. BAHNO Standards 2009. London: British Association of Head and Neck
Oncologists.
Hospice New Zealand. 2012. Standards for Palliative Care: Quality review programme and
guide. Wellington: Hospice New Zealand.
Liverpool Care Pathway. 2009. New Zealand Integrated Care Pathway for the Dying Patient.
http://lcpnz.org.nz/pages/home (accessed 16 August 2013).
Ministry of Health. 2001. The New Zealand Palliative Care Strategy. Wellington: Ministry of
Health.
Ministry of Health. 2010a. Guidance for Improving Supportive Care for Adults with Cancer in
New Zealand. Wellington: Ministry of Health.
NCCN. 2012b. NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) –
Palliative Care. Fort Washington: National Comprehensive Cancer Network (member access
only).
NICE. 2004. Improving Supportive and Palliative Care for Adults with Cancer. London:
National Institute for Clinical Excellence.
Palliative Care Australia. 2005. Standards for Providing Quality Palliative Care for all
Australians. Canberra: Palliative Care Australia.
Radiation Therapy Oncology Group. 2013. Acute Radiation Morbidity Scoring Criteria. URL:
www.rtog.org/ResearchAssociates/AdverseEventReporting/AcuteRadiationMorbidityScoring
Criteria.aspx (accessed 5 October 2013).
Tripartite Committee. 2011. Radiation Oncology Practice Standards: A Tripartite Initiative.
Royal Australian and New Zealand College of Radiologists, Australian Institute of
Radiography and Australasian College of Physical Scientists and Engineers in Medicine.
US Department of Health and Human Services, National Institutes of Health and National
Cancer Institute. 2009. Common Terminology Criteria for Adverse Events. URL:
http://evs.nci.nih.gov/ftp1/CTCAE/CTCAE_4.03_2010-06-14_QuickReference_5x7.pdf
(accessed 5 October 2013).
Follow-up and surveillance
BAHNO. 2009. BAHNO Standards 2009. London: British Association of Head and Neck
Oncologists.
COSA. 2011. Evidence Based Practice Guidelines for the Nutritional Management of Adult
Patients with Head and Neck Cancer. Sydney: Clinical Oncological Society of Australia.
Duffy SA, Terrell JE, Valenstein M, et al. 2002. Effect of smoking, alcohol and depression on
the quality of life of head and neck cancer patients. General Hospital Psychiatry 24: 140–7.
Joshi VK. 2010. Dental treatment planning and management for the mouth cancer patient.
Oral Oncology 46: 475–9.
Mehanna HM, Morton RP. 2006. Why are head and neck cancer clinicians not measuring
quality of life? Journal of Laryngology and Otology 120(10): 861–4.
Ministry of Health. 2007. New Zealand Smoking Cessation Guidelines. Wellington: Ministry
of Health.
54
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
– Provisional
NCCN. 2012a. NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) – Head
and Neck Cancers. Version 1. Fort Washington: National Comprehensive Cancer Network
(member access only).
NHS Wales. 2005. National Standards for Head and Neck Cancer Services 2005. Cardiff:
NHS Wales.
NICE. 2004. Guidance on Cancer Services: Improving Outcomes in Head and Neck Cancers
– The Manual. London: National Institute for Clinical Excellence.
Oskam IM, Verdonck de Leeuw IM, Aaronson NK, et al. 2010. Quality of life as a predictor of
survival: a prospective study on patients treated with combined surgery and radiotherapy for
advanced oral and oropharyngeal cancer. Radiotherapy and Oncology 97: 258–62.
Rogers SN. 2000. Quality of Life and Functional Outcomes after Oral and Oropharyngeal
Cancer. London: Astraglobe.
Royal College of Surgeons of England, British Society for Disability and Oral Health. 2012.
The Oral Management of Oncology Patients Requiring Radiotherapy, Chemotherapy and/or
Bone Marrow Transplantation: Clinical Guidelines. 2012 revision. London: Royal College of
Surgeons of England, British Society for Disability and Oral Health.
Scharloo M, Baatenburg de Jong RJ, Langeveld TPM, et al. 2005. Quality of life and illness
perceptions in patients with recently diagnosed head and neck cancer. Head and Neck
27: 857–63.
Clinical performance monitoring and research
BAHNO. 2009. BAHNO Standards 2009. London: British Association of Head and Neck
Oncologists.
Glass P, Pezzullo ML, Cutler H, et al. 2008. The Health Returns on Investment in Cancer
Research. Eveleigh: Cancer Institute of New South Wales.
Murphy KM, Topel RH. 2003. The economic value of medical research. In: Murphy KM,
Topel RH (eds) Measuring the gains from medical research: an economic approach.
Chicago: University of Chicago Press.
Appendices
Ministry of Health. 2002. Reducing Inequalities in Health. Wellington: Ministry of Health.
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand
- Provisional
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