Standards of
Service Provision for
Lymphoma Patients
in New Zealand –
Provisional
National Lymphoma Tumour
Standards Working Group
2013
Citation: National Lymphoma Tumour Standards Working Group. 2013. Standards of Service
Provision for Lymphoma Patients in New Zealand - Provisional. Wellington: Ministry of Health.
Published in December 2013 by the
Ministry of Health
PO Box 5013, Wellington 6145, New Zealand
ISBN 978-0-478-41539-1
HP 5742
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 ......................................................................................................... 1
How the lymphoma service standards were developed ................................... 2
Equity and Whānau Ora .................................................................................. 2
Summary of the clinical standards for the management of lymphoma
services ........................................................................................................... 4
Standards of service provision pathway ........................................................... 4
Summary of standards..................................................................................... 5
1
Timely Access to Services ............................................................................... 8
Good practice points ........................................................................................ 9
2
Referral and Communication ......................................................................... 10
Rationale ....................................................................................................... 10
Good practice points ...................................................................................... 10
3
Investigation, Diagnosis and Staging ............................................................. 12
Rationale ....................................................................................................... 12
Good practice points ...................................................................................... 12
4
Multidisciplinary Care ..................................................................................... 15
Rationale ....................................................................................................... 15
Good practice points ...................................................................................... 15
5
Supportive Care............................................................................................. 17
Rationale ....................................................................................................... 17
Good practice points ...................................................................................... 17
6
Care Coordination ......................................................................................... 19
Rationale ....................................................................................................... 19
Good practice points ...................................................................................... 19
7
Treatment ...................................................................................................... 21
Rationale ....................................................................................................... 21
Good practice points ...................................................................................... 22
8
Follow-up and Surveillance ............................................................................ 24
Rationale ....................................................................................................... 24
Good practice points ...................................................................................... 24
Standards of Service Provision for Lymphoma Patients in New Zealand –
Provisional
iii
9
Clinical Performance Monitoring and Research ............................................. 26
Rationale ....................................................................................................... 26
Good practice points ..................................................................................... 26
Appendices
iv
Appendix 1:
National Lymphoma Tumour Standards Working Group
Membership............................................................................ 28
Appendix 2:
Glossary ................................................................................. 29
Appendix 3:
The Lymphoma Patient Pathway ............................................ 34
Appendix 4:
Recommended GP Referral Form .......................................... 35
Appendix 5:
References ............................................................................. 37
Standards of Service Provision for Lymphoma Patients in New Zealand Provisional
Introduction
Background
Lymphoma is a lymph node cancer of both Hodgkin and non-Hodgkin subtypes.
The incidence in 2009 in New Zealand was 15.1 cases per 100,000 New
Zealanders; this has increased over time. (In 1994, only 11.4 per 100,000 people
were diagnosed with lymphoma.) This is a worldwide trend. The incidence is higher
in men (18.4/100,000) than in women (12.2/100,000) (Ministry of Health 2012a).
Although the incidence of lymphoma, like most cancers, increases with advancing
age, some lymphomas – in particular Hodgkin lymphoma – are more common in
younger patients. The incidence of Hodgkin overall is 3 per 100,000, and 70 percent
of patients are in the 15–45-year age group (Ministry of Health 2012b). Early
diagnosis and intervention are therefore critical. Lymphoma is not especially
amenable to lifestyle modification programmes, and affects all New Zealanders
without a significant ethnic bias.
Lymphoma is generally very responsive to medical treatment. Ministry of Health
statistics1 indicate that the death rate has reduced over time; for example, from
5.0 per 100,000 in 1995 to 4.7 per 100,000 in 2009. Despite being highly amenable
to treatment, lymphoma is the fifth most common cause of cancer-related death in
both men and women. According to Ministry of Health statistics, incidence of
lymphoma in the Māori population is similar to that in the general population,
although the Māori lymphoma death rate is slightly higher than non-Māori, at 5.2 per
100,000 per year. This likely reflects the poor access among Māori to appropriate
and timely management.
It is expected that a more streamlined approach to the diagnosis and management
of lymphoma will result in an improvement in outcomes for all patients with
lymphoma in New Zealand.
Objective
The scope of this document is the management of non-Hodgkin lymphoma and
Hodgkin lymphoma for all patients 15 years and over.
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. When used as a quality improvement tool, the
standards will promote nationally coordinated and consistent standards of service
provision across New Zealand. They aim to ensure efficient and sustainable bestpractice management of tumours, with a focus on equity.
1
Available through Cancer Control New Zealand: see www.cancercontrolnz.govt.nz/cancer-registry.
Standards of Service Provision for Lymphoma Patients in New Zealand –
Provisional
1
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 lymphoma service standards were developed
The National Haematology Working Group agreed that there should be two groups
set up to work on haematology tumours: lymphomas and myeloma.
The Lymphoma Tumour Standards were developed by a skilled working group
representing key specialties and interests across lymphoma pathways of care (see
Appendix 1). The National Lymphoma Tumour Standards Working Group had
access to expert advisors in key content, and included Māori and consumer
representation.
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); these standards have already been used by
DHBs to inform improvements to service delivery and clinical practice.
Subsequently provisional standards have been developed for an additional 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 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 international
guidelines in the haematology tumour stream (see Appendix 5).
Equity and Whānau Ora
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.
2
Standards of Service Provision for Lymphoma 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.
According to Ministry of Health data, incidence of lymphoma in the Māori population
is similar to the general population, although the death rate attributable to lymphoma
for Māori is slightly higher than it is for non-Māori, at 5.2 per 100,000 per year. This
likely reflects the poor access of many Māori to appropriate and timely management.
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.
These standards will address equity for Māori patients with lymphoma in the
following ways.

The standards focus on improving access to diagnosis and treatment for all
patients, including Māori and Pacific.

There will be a focus on potential points of delay in diagnosis and management
for Māori and Pacific people.

Ethnicity data will be collected on all access measures and the FCT indicators,
and will be used to identify and address disparities.

Ethnicity data will be collected on mortality, morbidity and disability.

Good practice points include health literacy training and cultural competency 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 2012d).

Care coordination will involve Māori expertise and providers in multidisciplinary
teams (MDTs) and networks.

Māori will be prioritised in the piloting of initiatives in service delivery to reduce
inequalities.
Standards of Service Provision for Lymphoma Patients in New Zealand –
Provisional
3
Summary of the clinical standards for the management of
lymphoma 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 the clusters of standards are good practice points. Good practice points
are supported by either the international literature, the opinion of the National
Lymphoma Tumour Standard Working Group or the consensus of feedback from
consultation with New Zealand clinicians involved in providing care to patients with
lymphoma. Also attached to each cluster are the requirements for monitoring the
individual standards.
Standards of service provision pathway
The lymphoma tumour standards are reflected in the following pathway.
4
Standards of Service Provision for Lymphoma Patients in New Zealand Provisional
Summary of standards
The standards for the management of lymphoma have been divided into nine
clusters:

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.
Timely access to services
Standard 1.1: Patients referred urgently with a high suspicion of lymphoma receive
their first cancer treatment or other management within 62 days.
Standard 1.2: Patients referred urgently with a high suspicion of lymphoma have
their first specialist assessment (FSA) within 14 days of referral.
Standard 1.3: Patients with a confirmed diagnosis of lymphoma receive their first
cancer treatment or other management within 31 days of the decision to treat.
Standard 1.4: Patients needing radiotherapy or systemic therapy receive their first
treatment within four weeks of the decision to treat.
Referral and communication
Standard 2.1: Patients with suspected lymphoma are referred to secondary and
tertiary care following an agreed referral pathway.
Standard 2.2: Patients and their general practitioners (GPs) are provided with verbal
and written information about their lymphoma, diagnostic procedures, treatment
options (including effectiveness and risks), final treatment plan and support services.
Standard 2.3: Communications between health care providers include the patient’s
name, date of birth and National Health Index (NHI) number, and are ideally
electronic.
Standards of Service Provision for Lymphoma Patients in New Zealand –
Provisional
5
Investigation, diagnosis and staging
Standard 3.1: Imaging investigations follow standardised imaging pathways agreed
to by New Zealand cancer treatment centres based on the Royal College of
Radiologists’ Cancer Imaging Guidelines.
Standard 3.2: Diagnosis of patients occurs through lymphoma excision biopsy (over
core biopsy or fine needle aspiration).
Standard 3.3:All patients with a provisional histological diagnosis of lymphoma have
their diagnosis reviewed and confirmed by a specialist pathologist affiliated to a
lymphoma multidisciplinary meeting (MDM).
Standard 3.4: The histology of excised lymphoma specimens is reported in a
synoptic format.
Standard 3.5: Imaging investigations for lymphoma are completed and reported
within two weeks from referral unless clinically urgent.
Standard 3.6: Appropriate imaging facilities, including timely access to advanced
imaging modalities, are available.
Standard 3.7: Investigations provide sufficient information to give each patient an
accurate diagnosis and staging.
Multidisciplinary care
Standard 4.1: All patients with confirmed lymphoma have their treatment plan
discussed at an MDM; recommendations are clearly documented in the patient’s
medical records and communicated to the patient, the treating clinician and the
patient’s GP within one week.
Supportive care
Standard 5.1: All patients with lymphoma 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 2010).
Standard 5.2: All patients with a confirmed diagnosis of lymphoma have access to
ongoing psychosocial services.
Care coordination
Standard 6.1: All patients with lymphoma have access to a haematology clinical
nurse specialist or other health professional who is a member of the MDM to help
coordinate all aspects of their care.
6
Standards of Service Provision for Lymphoma Patients in New Zealand Provisional
Treatment
Standard 7.1: All patients with lymphoma have a documented care plan prior to
starting treatment; this is formulated and endorsed at an MDM in the majority of
cases.
Standard 7.2: Where appropriate, advice regarding the impact of treatment on
fertility and referral for consultation with a fertility specialist is offered.
Standard 7.3: Detailed written treatment protocols are used for the management of
lymphoma.
Standard 7.4: 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 8.1: Follow-up plans include clinical review and potential late toxicities by
appropriate members of the MDT, working in conjunction with the patient, their
family/whānau and their GP.
Standard 8.2: Women under the age of 40 treated with radiotherapy for lymphoma
undergo individualised breast screening if breast tissue was included in their
radiotherapy treatment.
Clinical performance monitoring and research
Standard 9.1: Data relating to lymphoma 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 9.2: Patients with lymphoma are offered the opportunity to participate in
research projects and clinical trials where these are available.
Standards of Service Provision for Lymphoma Patients in New Zealand –
Provisional
7
1
Timely Access to Services
Standard 1.1
Patients referred urgently with a high suspicion of lymphoma
receive their first cancer treatment or other management within
62 days.
Standard 1.2
Patients referred urgently with a high suspicion of lymphoma
have their FSA within 14 days of referral.
Standard 1.3
Patients with a confirmed diagnosis of lymphoma receive their
first lymphoma treatment or other management within 31 days
of the decision to treat.
Standard 1.4
Patients needing radiotherapy or systemic therapy receive their
first treatment within four weeks of the decision to treat.
Rationale
Timely access to quality cancer management is important to support good health
outcomes for New Zealanders. 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 lymphoma or lymphoma diagnosis is very stressful for patients and
their 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 clinical care

patients are managed through the pathway, and experience well-coordinated
service delivery

delays are avoided as far as possible.
The FCT indicators (Standards 1.1–1.3) adopt a timed patient pathway approach
across surgical and non-surgical cancer treatment, and apply to inpatients,
outpatients and day patients.
Shorter waits for cancer treatments is a government health target for all radiation
treatment patients and systemic therapy outpatients.
8
Standards of Service Provision for Lymphoma Patients in New Zealand Provisional
The four-week timeframe for radiation treatment (Standard 1.4) is based on
international best-practice guidelines and recommendations that have been
endorsed by the Royal Australian and New Zealand College of Radiologists Faculty
of Radiation Oncology and the National Cancer Treatment Advisory Group. All
DHBs are currently achieving the target.
Good practice points
1.1
GP practices refer to secondary care services within one working day of
receiving a diagnostic result indicating lymphoma.
1.2
Reports are distributed electronically.
1.3
Systems are developed at a local level to manage the further investigation of
abnormalities suggestive of lymphoma incidentally found by radiological
imaging.
1.4
All patients with a confirmed diagnosis of lymphoma are offered a
psychosocial assessment, ideally before treatment commences.
1.5
Māori and Pacific peoples tend to wait longer for cancer care. Practitioners are
alert to potential points of delay in access to diagnosis and management.
Monitoring requirements
MR1A
Track FCT indicators.
MR1B
Collect and analyse ethnicity data on all access targets and indicators.
Standards of Service Provision for Lymphoma Patients in New Zealand –
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9
2
Referral and Communication
Standard 2.1
Patients with suspected lymphoma are referred to secondary
and tertiary care following an agreed referral pathway.
Standard 2.2
Patients and their GPs are provided with verbal and written
information about their lymphoma, diagnostic procedures,
treatment options (including effectiveness and risks), final
treatment plan and support services.
Standard 2.3
Communications between health care providers include the
patient’s name, date of birth and NHI number, and are ideally
electronic.
Rationale
The purpose of the referral pathway is to ensure that all patients with suspected
lymphoma are referred to the most appropriate health care service, and that
appropriate standardised information is available in the referral (see Appendix 3).
Effective health education resources may contribute to the protection of patient
safety, improved health outcomes and the empowerment of individuals and their
family/whānau to increase control over their health and wellbeing through increasing
health literacy levels. As indicated in Rauemi Atawhai: A guide to developing health
education resources in New Zealand (Ministry of Health 2012d), a person with a
good level of health literacy is able to find, understand and evaluate health
information and services easily in order to make effective health decisions.
Good practice points
10
2.1
Many patients with lymphoma are identified in primary care; patients may
present with a range of clinical features. Practitioners are alert to the wide
range of potential clinical symptoms and signs of lymphoma.
2.2
Patients with a suspected lymphoma are investigated and referred to a
haematologist or oncologist. (Patients with a positive result on lymph node fine
needle aspiration are immediately discussed with/referred to a haematologist
or oncologist, in order to develop an appropriate plan for excisional biopsy and
specialist review.)
2.3
Patient referrals include all relevant laboratory and imaging results available
(see the recommended GP referral form in Appendix 4).
Standards of Service Provision for Lymphoma Patients in New Zealand Provisional
Monitoring requirements
MR2A
Provide evidence of clear and accessible referral pathways.
MR2B
Audit correspondence between secondary/tertiary care and GPs.
MR2C
Provide evidence of culturally appropriate patient and family/whānau satisfaction
surveys, and audit the complaints process.
MR2D
Audit documentation between health care providers.
Standards of Service Provision for Lymphoma Patients in New Zealand –
Provisional
11
3
Investigation, Diagnosis and Staging
Standard 3.1
Imaging investigations follow standardised imaging pathways
agreed to by New Zealand cancer treatment centres based on
the Royal College of Radiologists’ Cancer Imaging Guidelines.
Standard 3.2
Diagnosis of patients occurs through lymphoma excision biopsy
(over core biopsy or fine needle aspiration).
Standard 3.3
All patients with a provisional histological diagnosis of
lymphoma have their diagnosis reviewed and confirmed by a
specialist pathologist affiliated to a lymphoma MDM.
Standard 3.4
The histology of excised lymphoma specimens is reported in a
synoptic format.
Standard 3.5
Imaging investigations for lymphoma are completed and
reported within two weeks from referral unless clinically urgent.
Standard 3.6
Appropriate imaging facilities, including timely access to
advanced imaging modalities, are available.
Standard 3.7
Investigations provide sufficient information to give each patient
an accurate diagnosis and staging.
Rationale
Successful treatment of lymphoma depends on accurate diagnosis and staging.
Good practice points
Pathology
12
3.1
Pathologist fine needle aspiration is a safe, cost-effective and accurate test in
the initial assessment of palpable lymph nodes in both community and hospital
settings. In the case of a suspicious or positive diagnosis of lymphoma,
patients are promptly referred for further assessment. Final classification and
treatment decisions are not made on a fine needle aspiration diagnosis alone.
Limitations of the test – particularly false negative diagnoses – are recognised.
3.2
It is recognised that in some clinical situations an excision biopsy is not
practical, in which case assessment of core biopsies is satisfactory. All tissue
submitted for histologic examination is sent fresh for ancillary flow cytometry
and/or cytogenetic studies. An integrated report is produced for new
lymphoma diagnoses.
Standards of Service Provision for Lymphoma Patients in New Zealand Provisional
3.3
Appropriate cases are reviewed at an MDM. Cases are clinician-selected and
patient selection is targeted to optimise resources and ensure equity of access
to expert opinion.
3.4
Patients, and particularly Māori and Pacific patients, are given the option of
retaining tissue postoperatively (NZGG 2009).
Clinical examination
3.5
Patients are examined for lymphadenopathy, hepatosplenomegaly, pleural
effusions, ascites and skin lesions.
Bone marrow biopsy
3.6
A bone marrow biopsy is part of the routine staging of most non-Hodgkin
lymphoma.
3.7
A bone marrow biopsy is not necessary for early-stage Hodgkin lymphoma,
and may be replaced by positron emission tomography and computed
tomography (PET-CT) scanning in advanced Hodgkin lymphoma staging.
3.8
A bone marrow biopsy may not be necessary for low-grade follicular
lymphoma if a ‘watch and wait’ approach is being taken.
Imaging
3.9
A chest X-ray forms part of initial investigation of symptoms. There is no role
for abdominal X-rays.
3.10 All patients with newly diagnosed lymphoma require staging with a CT scan of
neck, chest, abdomen and pelvis with contrast.
3.11 PET-CT scanning is undertaken in biopsy-proven cases of:

Hodgkin lymphoma

high-grade non-Hodgkin lymphoma, if this has not been fully staged with
CT and/or PET-CT will potentially alter stage or management

follicular lymphoma, where the PET-CT result may alter the stage or
treatment toxicity radiotherapy field, or change the focus of the
management plan from radiotherapy to observation.
3.12 PET-CT scanning is available in four regions throughout New Zealand, on
established pathways. All machines are capable of performing high-resolution
diagnostic contrast-enhanced CT concurrent with PET imaging. Separate CT
scans may therefore not be required in cases where PET-CT is indicated (see
Good practice point 3.11 above), minimising cost and radiation exposure for
the patient.
Standards of Service Provision for Lymphoma Patients in New Zealand –
Provisional
13
3.13 Interim (mid-cycle) CT or PET-CT is restricted to situations where clinical
management will be affected, and to clinical trials. Magnetic resonance
imaging (MRI) or ultrasound scan is performed if CT or PET-CT is
contraindicated; for example, for pregnant patients.
Restaging at end of treatment
3.14 At the end of treatment, imaging is undertaken as noted above, including
through a CT scan of chest, abdomen/pelvis and (where appropriate) neck.
3.15 PET-CT scanning is recommended for all patients with Hodgkin lymphoma
and suggested in all those with high-grade non-Hodgkin lymphoma with a
residual mass after treatment (~80% and 40% respectively). Biopsy
confirmation is necessary for equivocal findings.
Relapse
3.16 In the case of relapse, imaging is undertaken as noted above, including
through PET-CT scanning where it would influence clinical management.
3.17 In many cases relapse requires confirmation with repeat biopsy.
Monitoring requirements
14
MR3A
Ensure that radiology departments work to standardised imaging protocols.
MR3B
Ensure that MDMs provide evidence of appropriate radiological imaging.
MR3C
Ensure that MDMs provide evidence of pathological review and confirmation.
MR3D
Ensure that pathology departments keep a register of synoptic reports.
MR3E
Ensure that MDMs audit pathology reviews.
MR3F
Ensure that MDMs provide records of all patient staging prior to treatment.
Standards of Service Provision for Lymphoma Patients in New Zealand Provisional
4
Multidisciplinary Care
Standard 4.1
All patients with confirmed lymphoma have their treatment plan
discussed at an MDM; recommendations are clearly
documented in the patient’s medical records and communicated
to the patient, the treating clinician and the patient’s GP within
one week.
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.
Presentation at an MDM may mean only registration of the case and collection of
agreed baseline data. Discussion may not be required, depending on the agreed
criteria for presentation at that MDM.
Good practice points
4.1
MDMs are governed by agreed terms of reference, and written protocols
describe the organisation and content of the meeting.
4.2
A chair is appointed according to the terms of reference. Core members (see
Ministry of Health 2012b) are present for the discussion of all cases where
their input is needed.
4.3
Locally agreed referral pathways are established with clear information as to
who can refer, how to refer and the timeframes within which referrals will be
expected (along with processes for late referrals). Agreed criteria determine
which patients should be discussed at the MDM.
4.4
A role representing a single point of coordination for MDMs is established, to
support participating clinicians. Treatment recommendations agreed by
participants are documented during the meeting and recorded in patients’
medical records.
Standards of Service Provision for Lymphoma Patients in New Zealand –
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15
4.5
Lymphoma-specific core data is collected prior to and during the MDM. Data
sets for use in clinical audit and pathway monitoring are consistently and
routinely captured, for ongoing quality improvement.
4.6
Patients are informed about the MDM prior to the presentation of their case.
They are then informed about the MDM’s recommendations and, in
consultation with members of the treating team, make their own final decisions
about their treatment and care plan.
4.7
Established processes govern communication of recommendations to
patients, GPs and clinical teams within locally agreed timeframes. The MDM
identifies a lead clinical team member to discuss the MDM’s recommendations
with the patient.
Monitoring requirements
16
MR4A
Ensure that MDMs audit patients registered at the MDM.
MR4B
Ensure that MDMs audit treatment recommendations and following
communications.
Standards of Service Provision for Lymphoma Patients in New Zealand Provisional
5
Supportive Care
Standard 5.1
All patients with lymphoma 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 2010).
Standard 5.2
All patients with a confirmed diagnosis of lymphoma have
access to ongoing psychosocial services.
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
5.1
All patients have their supportive care and psychosocial needs assessed
using validated tools and documented at the commencement of treatment, at
appropriate intervals or times of significant change, and as clinically needed.
5.2
Patients are given access to services appropriate to their individual (physical,
social, cultural, emotional, psychological, psychosocial and spiritual) needs.
5.3
Patients are offered referral to age-appropriate relevant support groups (most
often cancer-specific non-governmental organisations). Referral to adolescent
and young adult cancer services is appropriate for lymphoma patients under
the age of 25.
5.4
Patients experiencing significant distress or disturbance are referred to health
practitioners with the requisite specialist skills.
5.5
Where demand for psychological care services exceeds capacity, strategies
are in place to meet patients’ needs through external organisations.
5.6
Supportive care services are culturally appropriate for all patients, including
Māori and Pacific people and those of other ethnicities.
5.7
Clinical and supportive care information is provided in written and verbal
language that is clear, accurate, unbiased and respectful of the patient’s
cultural, spiritual and ethical beliefs, and that is age-appropriate.
Standards of Service Provision for Lymphoma Patients in New Zealand –
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17
5.8
5.9
Information provided to patients may include:

general background information about lymphoma

detailed information on treatment options and specific local arrangements,
including information about the MDM and support services, and whom the
patient should contact if necessary

details of local self-help/support groups and other appropriate organisations

information related to the National Travel Assistance Scheme (Ministry of
Health 2006)

information about healthy living during and after cancer treatment.
Health professionals ensure that patients understand the information provided,
or refer them on to suitably qualified service providers/advisors who can help.
5.10 Interpreter or translation services are provided for patients and family/whānau
who have limited English.
5.11 Health professionals take every opportunity to advocate for their patient. This
could include supporting and educating patients regarding their disease, as
well as encouraging patients to become more involved in their own care.
5.12 All clinicians responsible for communicating with patients and their
family/whānau complete health literacy training.
5.13 All information developed for or provided to patients and their family/whānau
meets Ministry of Health Guidelines (Ministry of Health 2012d).
Monitoring requirements
18
MR5A
Routinely review patient complaints and feedback across all contributing
services.
MR5B
Audit referrals to appropriate cancer non-government organisations.
MR5C
Audit patient satisfaction surveys.
MR5D
Provide evidence of culturally appropriate patient and family/whānau satisfaction
surveys, and audit complaints processes.
Standards of Service Provision for Lymphoma Patients in New Zealand Provisional
6
Care Coordination
Standard 6.1
All patients with lymphoma have access to a haematology 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 coordinators are individuals (usually specialist nurses or allied health
professionals) who have an in-depth/specialist knowledge of lymphomas and their
treatment and who can act as advocates for patients, facilitating the coordination of
the diagnostic and treatment pathway, providing continuity and ensuring patients
know how to access information and advice.
Good practice points
6.1
Patients are provided with their care coordinator’s name and contact details
within seven days of diagnosis. This person is the single point of contact for
patients and their family/whānau throughout the lymphoma journey.
6.2
All regional cancer centres employ a dedicated clinical nurse specialist who
has knowledge about the disease process and treatment modalities and is
able to undertake comprehensive patient assessment and assist with planning
patient care.
6.3
Discharge planning is comprehensive when patients transfer between regional
areas/hospitals for ongoing and follow-up care.
6.4
Sometimes, such as during long-term follow-up, the care coordinator role may
be undertaken by other staff; for example, a primary care team member or
other specialist, as appropriate.
6.5
Educational programmes are provided to all health care professionals so that
they can develop effective haematology knowledge and skills to ensure care is
planned and delivered safely.
6.6
Services routinely use a tool to assess psychological and social needs (such
as the ‘Distress Thermometer’ (Baken and Woolley 2011).
Standards of Service Provision for Lymphoma Patients in New Zealand –
Provisional
19
Monitoring requirements
20
MR6A
Audit patient records and clinical notes on contact points between care
coordinators and patients.
MR6B
Routinely review patient complaints and feedback across services.
MR6C
Audit patient satisfaction surveys.
MR6D
Ensure that MDMs provide records of identified care coordinators.
MR6E
Provide evidence of culturally appropriate patient and family/whānau satisfaction
surveys, and audit complaints processes.
Standards of Service Provision for Lymphoma Patients in New Zealand Provisional
7
Treatment
Standard 7.1
All patients with lymphoma have a documented care plan prior
to starting treatment; this is formulated and endorsed at an
MDM in the majority of cases.
Standard 7.2
Where appropriate, advice regarding the impact of treatment on
fertility and referral for consultation with a fertility specialist is
offered.
Standard 7.3
Detailed written treatment protocols are used for the
management of lymphoma.
Standard 7.4
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.
Rationale
Lymphomas are a diverse group of malignancies entailing widely divergent natural
histories, outcomes and approaches to management. The evidence base for the
management of lymphoma is rapidly changing; a detailed assessment is beyond the
scope of this document.
Results of therapy are likely to be optimal when it is delivered according to a formal
written policy. It is important that policies are in line with those in use elsewhere in
Australasia and worldwide. Substantial deviation should occur only in the context of
a formal clinical trial.
Chemotherapeutic agents include other systemic therapies, such as biological
agents and cytokines. Chemotherapeutic agents are potentially dangerous; fatalities
have occurred due to their inappropriate administration. This particularly applies to
systemic therapy given via the intrathecal route. It is therefore essential that
systemic therapy is provided by trained specialist staff in a safe environment with
appropriate facilities.
A diagnosis of lymphoma and its subsequent treatment can have a devastating
impact on the quality of a person’s life, as well as on the lives of their family/whānau
and other carers. Patients and their family/whānau should expect to be offered
optimal symptom control and psychological, social and spiritual support.
Most patients will experience a significant symptom burden during their cancer
journey. The role of palliative care in patients with lymphoma is important.
Standards of Service Provision for Lymphoma Patients in New Zealand –
Provisional
21
Good practice points
General
7.1
Treatment plans follow formal policies and protocols as much as possible.
Total care plans are individualised, taking into account a patient’s needs and
physical, social, cultural, emotional, psychological and spiritual preferences.
Systemic therapy
7.2
Treatment is evidence based and adheres to local, national or international
guidelines (eg, NCCN Guidelines and guidelines published by the Lymphoma
Network New Zealand and the Cancer Institute of New South Wales).
7.3
Treatment protocols include:

regimens and their indications

drug doses and scheduling

radiation therapy protocol

pre- and post-treatment investigations

dose modifications.
Radiation therapy
7.4
Where combined modality treatment is planned, pre-treatment imaging
encompasses all sites of disease, to facilitate radiotherapy planning. Where
this is not possible, early involvement of a radiation oncologist is required.
7.5
Treatment is delivered in accordance with the Radiation Oncology
Prioritisation Guidelines (Ministry of Health 2011b).
7.6
Radiotherapy commences four–six weeks after completion of systemic
therapy when delivered as part of a combined modality protocol.
Surgery
22
7.7
The role of surgery in the management of lymphoma is generally limited to
obtaining tissue for diagnostic purposes.
7.8
Patients, and particularly Māori and Pacific patients, are given the option of
retaining tissue postoperatively (NZGG 2009).
Standards of Service Provision for Lymphoma Patients in New Zealand Provisional
Stem cell transplantation
7.10 High-dose chemotherapy/systemic therapy or stem cell transplantation are
only delivered:

by specialists with appropriate training in a centre with appropriate
experience and resources

following approval from a regional stem cell transplant advisory committee.
Palliative care
7.11 Palliative care is available to all patients diagnosed with lymphomas based on
need and independent of current health status, age, cultural background or
geography.
7.12 Palliative care is given in accordance with Hospice New Zealand’s Standards
for Palliative Care (2012) and a recognised end-of-life-care pathway.
7.13 A written care plan and a common electronic management system are
recommended.
7.14 Patients and their families/whānau are offered palliative care options and
information in plain language that is targeted to their particular needs, and this
is incorporated into their care plans.
Monitoring requirements
MR7A
Audit records of proposed plans of care, onward referrals and follow-up
responsibilities recorded at MDT reviews and in patients’ notes.
MR7B
Audit patient satisfaction surveys.
Standards of Service Provision for Lymphoma Patients in New Zealand –
Provisional
23
8
Follow-up and Surveillance
Standard 8.1
Follow-up plans include clinical review and potential late
toxicities by appropriate members of the MDT, working in
conjunction with the patient, their family/whānau and their GP.
Standard 8.2
Women under the age of 40 treated with radiotherapy for
lymphoma undergo individualised breast screening if breast
tissue was included in their radiotherapy treatment.
Rationale
Relapse is rarely detected by routine scanning of asymptomatic patients.
Follow-up for lymphoma patients should screen for clinical signs of relapse and late
toxicities, including second cancers. It is important that patients maintain a strong
relationship with their GP, as many are vulnerable to the premature onset of
common conditions associated with aging, such as diabetes mellitus, cardiovascular
disease, hypertension and hyperlipidaemia. The risk posed by second malignancies
may be reduced by lifestyle modification and/or screening.
Good practice points
8.1
A follow-up schedule is formulated for individual patients that covers frequency
of visits, tests required and designated services, with a nominated point of
contact in the case of clinical concerns.
8.2
Patients are given the opportunity to review their social circumstances with a
relevant health professional, to support advance care planning.
8.3
In order to promote healthy living, patients are encouraged to discuss Green
Prescriptions2 with their GP.
Patients with aggressive lymphoma
8.4
For Hodgkin and high-grade non-Hodgkin lymphoma, follow-up care should
include the following:
First two–three years after therapy:
2
24

clinical assessment three–four-monthly

imaging studies as clinically indicated; once a post-treatment baseline is
established there is no requirement to undertake ‘routine’ surveillance CT
or PET-CT scanning
A Green Prescription (GRx) is a health professional’s written advice to a patient to be physically
active, as part of the patient’s health management.
Standards of Service Provision for Lymphoma Patients in New Zealand Provisional
Three–five years after therapy:

six-monthly clinical assessment by the patient’s GP in a primary-care
setting, particularly looking for recurrent lymphadenopathy or the onset of
B symptoms

investigations as clinically indicated

late-effects-specific screening, such as:
– endocrine surveillance – thyroid, fertility
– cardiac assessment – after radiation to the chest
– osteoporosis – premature menopause, steroid use
– myelodysplasia
– renal function.
Patients with low-grade lymphomas
8.5
Follow-up care is individualised to assess symptomatic progression. This will
depend on the age of the patient, the extent and biology of the disease, and
prior therapy.
Patients who have previously received high-dose therapy/a blood stem
cell transplant
8.6
Long-term specialist follow-up care is required to screen for late effects.
Monitoring requirements
MR8A
Audit written follow-up information provided following agreed surveillance
protocols.
Standards of Service Provision for Lymphoma Patients in New Zealand –
Provisional
25
9
Clinical Performance Monitoring and Research
Standard 9.1
Data relating to lymphoma 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 9.2
Patients with lymphoma are offered the opportunity to
participate in research projects and clinical trials where these
are available.
Rationale
There is currently no national cancer database other than the New Zealand Cancer
Registry, which is a population-based register of all primary malignant tumours
diagnosed in New Zealand. This is a significant impediment to advancing cancer
care in this country.
Cancer data-related projects are currently being undertaken or planned by the
Ministry of Health, Cancer Control New Zealand and regional cancer networks.
Good practice points
26
9.1
Patients are informed that their information is being recorded in a lymphoma
database to help the MDT propose a treatment plan for them and to monitor
and evaluate access to services.
9.2
Where data are collected, they are compiled in accordance with relevant
National Cancer Core Data Definition Interim Standards.
9.3
Multidisciplinary teams are responsible for collecting and managing
information in relation to patients with lymphoma.
9.4
Clinicians working with patients with lymphoma have access to the database,
to help inform disease management.
9.5
Information concerning all clinical trials being conducted in New Zealand
hospitals is made available to patients and clinicians.
9.6
Patients suitable for lymphoma trials being conducted in New Zealand are not
prevented from enrolment due to geographic or other barriers. DHBs make
every effort to facilitate entry of patients into trials where they are being
conducted outside of patients’ DHB of residency.
Standards of Service Provision for Lymphoma Patients in New Zealand Provisional
Monitoring requirements
MR9A
Provide evidence that patient data are collected in accordance with national
protocols.
MR9B
Audit the data collection annually to ensure accuracy and compliance.
MR9C
Monitor the data collection (including, where possible, ‘did-not-attends’) by
ethnicity.
MR9D
Provide evidence of the reporting of data sets to national data repositories (as
available) at agreed frequencies.
MR9E
Ensure that MDMs provide documentation of all open trials/research projects,
and numbers of patients entered per trial per year.
Standards of Service Provision for Lymphoma Patients in New Zealand –
Provisional
27
Appendix 1:
National Lymphoma Tumour Standards Working
Group Membership
Chair
Dr Leanne Berkahn, Haematologist, Auckland DHB
Members
Dr Simon Allan, Director of Palliative Care, Arohanui Hospice
Marj Allen, Consumer Representative
Dr Kate Clarke, Medical Oncologist, Capital & Coast DHB
Dr Jim Edwards, Medical Oncologist, Canterbury DHB
Pru Etcheverry, Chief Executive Officer, Leukaemia and Blood Cancer New Zealand
Dr Ross Henderson, Clinical Director of Haematology, Waitemata DHB
Rosie Howard, Bone Marrow Transplant Clinical Nurse Specialist, Auckland DHB
Dr Deborah Ingham, GP, Kelburn Surgery
Lizzie Kent, Clinical Psychologist, Massey University
Dr Allanah Kilfoyle, Haematologist, MidCentral DHB
Dr Richard Lloyd, Pathologist, Auckland DHB
Dr Alex Ng, Surgeon, Auckland DHB
Dr Anna Nicholson, Radiation Oncologist, Capital & Coast DHB
Toni Nicholson, Social Worker, MidCentral DHB
Dr Humphrey Pullon, Haematologist, Waikato DHB
Dr Jeremy Sharr, Radiologist, Christchurch Radiology Group
Liz Sommers, Adolescent and Young Adult Cancer Clinical Nurse Specialist, Capital
& Coast DHB
Stephanie Turner, Director of Māori Health, Wairarapa DHB
Advisors and stakeholders
Dr Bart Baker, Clinical Director of Haematology, MidCentral DHB
Mary Birdsall, Medical Director, Fertility Associates
Dr Liam Fernyhough, Haematologist, Canterbury DHB
Dr Tony Goh, Radiologist, Canterbury DHB
Dr Wendy Jar, Clinical Nurse Specialist, Canterbury DHB
Phil Kerslake, Consumer Representative
Anne Krishna, Clinical Nurse Specialist, Haematology, MidCentral DHB
Sheldon Ngatai, Consumer Representative
Catherine Oliver, Adult Haematology Pharmacist, Auckland DHB
28
Standards of Service Provision for Lymphoma 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, radiation therapists, social
workers and speech and language therapists
Asymptomatic
Without obvious signs or symptoms of disease. In early stages,
cancer may develop and grow without producing symptoms
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
Biopsy
Removal of a sample of tissue or cells from the body to assist
in the diagnosis of a disease
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
Cancer service pathway
The cumulative cancer-specific services that a person with
cancer uses during the course of their experience with cancer
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
Consumer
A user of services
Curative
Aiming to cure a disease
Cytogenetics
The study of chromosomes and chromosomal abnormalities
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
Standards of Service Provision for Lymphoma Patients in New Zealand –
Provisional
29
30
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
Excision
The removal of tissue by surgery
Family/whānau
Can include extended family/whānau, partners, friends,
advocates, guardians and other representatives
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 a goal for DHBs to achieve over time
Fine needle aspiration
cytology
The use of a fine needle to biopsy a tumour or lymph node to
obtain cells for cytological confirmation of diagnosis
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 a
patient’s first treatment, including palliative care
Haematologist
A doctor who specialises in the diagnosis and treatment of all
blood diseases, including malignant blood diseases such as
leukaemia, lymphoma and myeloma
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-grade cancer
A cancer that tends to grow more aggressively, be more
malignant and have the least resemblance to normal cells
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
Holistic
Looking at the whole system rather than just concentrating on
individual components
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
Lesion
An area of abnormal tissue
Standards of Service Provision for Lymphoma Patients in New Zealand Provisional
Lymphadenopathy
Disease or swelling of the lymph nodes
Malignant
Cancerous. Malignant tumours can invade and destroy nearby
tissue and spread to other parts of the body
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
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
refers to making 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
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
Palliative
Anything that serves to alleviate symptoms due to the
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
Standards of Service Provision for Lymphoma Patients in New Zealand –
Provisional
31
32
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
Positron emission
tomography (PET)
A highly specialised imaging technique using a radioactive
tracer to produce a computerised image of body tissues to find
any abnormalities. PET scans are sometimes used to help
diagnose cancer and investigate a tumour’s response to
treatment
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
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
her or she presents with clinical features indicating high
suspicion of cancer
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
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 the 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
Standards of Service Provision for Lymphoma Patients in New Zealand Provisional
Toxicity
The extent of the undesirable and harmful side-effects of a
drug
Tumour, node,
metastasis (TNM)
A staging system that describes the extent of cancer
Ultrasound
A non-invasive technique using ultrasound waves (highfrequency vibrations beyond the range of audible sound) to
form an image
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 Lymphoma Patients in New Zealand –
Provisional
33
Appendix 3:
The Lymphoma Patient Pathway
34
Standards of Service Provision for Lymphoma Patients in New Zealand Provisional
Appendix 4:
Recommended GP Referral Form
Surname: ..........................................................................................
Given names:....................................................................................
GP NEW PATIENT
REFERRAL FORM
LYMPHOMA
DOB: ........................................... Sex: ..........................................
NHI: ...................................................................................................
Address: ............................................................................................
..........................................................................................................
Contact details: .................................................................................
Referring clinician details:
Name: ........................................................ Phone: ........................ Fax: ............................
Date of referral: .......................................................................................................................
Patient details: .........................................................................................................................
Presentation: ...........................................................................................................................
................................................................................................................................................
B symptoms:
Fever 
Weight loss 
Night sweats 
Examination findings

Splenomegaly 
Lymph nodes
Hepatomegaly 
Other ............................................................
Significant co-morbidities ........................................................................................................
Relevant psychosocial issues .................................................................................................
Current medications: ...............................................................................................................
Allergies:..................................................................................................................................
Work-up: investigations and procedures
Please provide reports of any investigations undertaken when submitting this form:
FBC
LDH
LFT, creatinine
CXR
FNA
CT scan
Other procedures
Yes
No
Pending





















Standards of Service Provision for Lymphoma Patients in New Zealand –
Provisional
35
Urgency of referral
Immediate review required (one to two days)

Make phone contact
Patient critically unwell, tumour causing compression symptoms,
suspected Burkitt lymphoma
Urgent (within two weeks)

Suspected Hodgkin or aggressive non-Hodgkin lymphoma
Semi-urgent (within four weeks) (suspected indolent lymphoma)
36

Standards of Service Provision for Lymphoma Patients in New Zealand Provisional
Appendix 5:
References
Development of the lymphoma standards was informed by key national and
international documents. Those documents that most directly influenced the
development of the standards are listed below.
British Committee for Standards in Haematology. 2011. Guidelines on the Investigation and
Management of Follicular Lymphoma. London: British Committee for Standards in
Haematology.
Cancer Council Australia and Australian Cancer Network. 2007. Clinical Practice Guidelines
for the Diagnosis and Management of Lymphoma. Sydney: Cancer Council Australia and
Australian Cancer Network.
Central Cancer Network. 2010. Imaging Guidelines in Cancer Management. Palmerston
North: Central Cancer Network.
Department of Health, Government of South Australia. 2010. South Australian Lymphoma
Pathway: Optimising outcomes for all South Australians diagnosed with lymphoma.
Adelaide: Department of Health, Government of South Australia.
Ministry of Health. 2003. The New Zealand Cancer Control Strategy. Wellington: Ministry of
Health.
Ministry of Health. 2005. The New Zealand Cancer Control Strategy Action Plan 2005–2010.
Wellington: Ministry of Health.
Ministry of Health. 2010. Guidance for Improving Supportive Care for Adults with Cancer in
New Zealand. Wellington: Ministry of Health.
Ministry of Health. 2011b. Radiation Oncology Prioritisation Guidelines. URL:
www.midlandcancernetwork.org.nz/file/fileid/44264 (accessed 6 August 2013).
Ministry of Health. 2011c. Targeting Shorter Waits for Cancer Treatment. Wellington:
Ministry of Health.
Ministry of Health. 2012b. Guidance for Implementing High-Quality Multidisciplinary
Meetings: Achieving best practice cancer care. Wellington: Ministry of Health.
Ministry of Health. 2012c. Medical Oncology Prioritisation Criteria. URL:
www.nsfl.health.govt.nz/apps/nsfl.nsf/pagesmh/401 (accessed 6 August 2013).
Ministry of Health. 2013. Faster Cancer Treatment Programme. URL:
www.health.govt.nz/our-work/diseases-and-conditions/cancer-programme/faster-cancertreatment-project (accessed 6 August 2013).
NICE. 2003. Guidance on Cancer Services: Improving Outcomes in Haematological
Cancers. London: National Institute for Clinical Excellence.
Northern Cancer Network. 2011. Regional Cancer Care Coordination Model Project.
Auckland: Northern Cancer Network.
RCPA. 2010. Tumours of Haematopoietic and Lymphoid Tissue Structured Reporting
Protocol. Sydney: Royal College of Pathologists of Australasia.
Standards of Service Provision for Lymphoma Patients in New Zealand –
Provisional
37
Woodley D. 2012. Implementing the Faster Cancer Treatment Indicators – Supplementary
Information. (Letter to DHB Chief Executive Officers and General Managers Planning and
Funding, cc DHB Chief Information Officers, Chief Operating Officers and Regional Cancer
Network Managers.) URL: www.midlandcancernetwork.org.nz/file/fileid/44227 (accessed
6 August 2013).
Introduction
Ministry of Health. 2002. Reducing Inequalities in Health. Wellington: Ministry of Health.
Ministry of Health. 2010. Guidance for Improving Supportive Care for Adults with Cancer in
New Zealand. Wellington: Ministry of Health.
Ministry of Health. 2012a. Cancer: New registrations and deaths 2009. Wellington: Ministry
of Health.
Ministry of Health. 2012d. Rauemi Atawhai: A guide to developing health education
resources in New Zealand. 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.
Timely access to services
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