Standards-Of-Service-Provision-Myeloma-Patients-Dec13

Standards of Service Provision for Myeloma Patients in New Zealand – Provisional

National Myeloma Tumour Standards Working Group

2013 Citation: National Myeloma Tumour Standards Working Group. 2013. Standards of Service Provision for Myeloma 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 978-0-478-42541-4 (online) HP 5744

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...... 2 How the myeloma service standards were developed...... 3 Equity and Whānau Ora...... 3 Summary of the clinical standards for the management of myeloma services...... 4

1 Timely Access to Services...... 8 Rationale...... 8 Good practice points...... 9

2 Referral and Communication...... 10 Rationale...... 10 Good practice points...... 11

3 Investigation, Diagnosis and Staging...... 12 Rationale...... 12 Good practice points...... 12

4 Multidisciplinary Care...... 15 Rationale...... 15

5 Supportive Care...... 17 Rationale...... 17 Good practice points...... 17

6 Care Coordination...... 19 Rationale...... 19 Good practice points...... 19

7 Treatment...... 20 Rationale...... 20 Good practice points...... 21

8 Follow-up and Surveillance...... 23 Rationale...... 23 Good practice points...... 23

Standards of Service Provision for Myeloma Patients in New Zealand - iii Provisional 9 Clinical Performance Monitoring and Research...... 24 Rationale...... 24 Good practice points...... 24

Appendices Appendix 1: National Myeloma Tumour Standards Working Group Membership...... 25 Appendix 2: Glossary...... 26 Appendix 3: The Myeloma Patient Pathway...... 31 Appendix 4: Recommended GP Referral Form...... 32 Appendix 5: References...... 34

iv Standards of Service Provision for Myeloma Patients in New Zealand - Provisional Introduction

Background Myeloma is the term given to a malignant proliferation of plasma cells that are fully differentiated B lymphocytes of the immune system. Millions of different plasma cells are present in the healthy state, each one distinguished by its ability to manufacture and secrete a specific antibody in one of five antibody classes: immunoglobulin G, A, M, D and E. Under an antigenic stimulus, the particular plasma cell whose antibody recognises that antigen proliferates to make an increased amount of its antibody and form part of an effective immune response. Normally plasma cells occupy less than 1 percent of bone marrow cells, but in myeloma a malignant clone of plasma cells becomes autonomous, and disease results from the greatly increased number of plasma cells and (often) their associated secreted monoclonal antibody, called M protein or paraprotein.

Myeloma is, after non-Hodgkin lymphoma, the most common haematological malignancy. The New Zealand Cancer Registry records approximately 275 new diagnoses of myeloma each year. However, it is likely that not all new diagnoses are recorded with the Registry; estimates by New Zealand haematologists suggest the true number of patients diagnosed each year may be half as many again. The average age of a person at diagnosis of myeloma is 70 years; it is very rare in those younger than 30. A recent study of all myeloma patients treated at one New Zealand cancer centre over the last decade showed that the median survival of patients with myeloma in New Zealand is around four years, but this depends most importantly on age at diagnosis, such that the median survival of younger patients is around six to seven years and of older patients two to three years. The report Unequal Impact II (Ministry of Health 2010b) gives some figures on diagnosis of myeloma in the Māori community between 2002 and 2006. These show a higher registration rate ratio of 1.68 per 100,000 and death rate ratio of 2.23 for Māori females compared with non- Māori females (the corresponding rates for Maori and non-Maori males were not different).

Prior to the onset of myeloma in most (perhaps all) patients, there is a premalignant phase of disease in which there exists a modestly increased and thus detectable clone of plasma cells and associated monoclonal antibody, which is not rapidly changing and which is asymptomatic and does not benefit from treatment. This is referred to as monoclonal gammopathy of uncertain significance (MGUS); it is very frequent in the general population and increases with age, such that it is found in over 5 percent of people older than 70. For every patient with myeloma, there are at least 10 patients known to have MGUS, and many more in whom MGUS has not been recognised. Patients with MGUS have a risk of progressing to myeloma of approximately 1 percent per year, and require long-term follow-up.

Standards of Service Provision for Myeloma Patients in New Zealand - 1 Provisional Some patients with myeloma do not have any symptoms or evidence of any organ damage. These patients are said to have asymptomatic myeloma, and they do not require treatment. Patients with asymptomatic myeloma should be distinguished from those with MGUS because they have a higher chance of progressing to symptomatic myeloma requiring treatment, and should be monitored more closely.

These standards apply to patients with symptomatic myeloma experiencing effects caused by myeloma (eg, anaemia, renal failure and bone disease) and who benefit from treatment with supportive therapy for symptoms such as pain, anaemia, immunosuppression and infection, bone disease and renal failure. In addition these patients require specific therapy for myeloma, aiming to control symptoms and prolong duration and quality of life. These therapies are not curative – most patients with myeloma will die from their disease. Typically specific therapies induce a response in myeloma, measured by decreased symptoms and disease bulk, but after a period of some months or years, myeloma relapses. Further lines of therapy are less effective and responses are typically shorter, until eventually the disease becomes refractory to treatment and/or the toxicity of therapy becomes dose limiting, and the patient enters the end stage of the disease.

The mainstay of specific treatment for myeloma is systemic therapy using several active agents, including, in younger, fitter patients, high-dose systemic therapy supported by autologous haematopoietic stem cell transplant. Several newer chemotherapeutic agents have been introduced since 2000; together with high-dose therapy and better supportive therapy, these appear to have improved survival, particularly in younger patients. Radiotherapy can provide useful palliation to localised sites of symptomatic disease, and surgery may also be required to stabilise actual or impending pathological fracture caused by myeloma.

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. 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 best- practice management of tumours, with a focus on equity.

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.

2 Standards of Service Provision for Myeloma Patients in New Zealand - Provisional How the myeloma service standards were developed The National Haematology Working Group agreed that there should be two working groups set up to work on haematological tumours: one for lymphomas and one for myeloma.

The Myeloma Tumour Standards were developed by a skilled working group representing key specialties and interests across the myeloma pathway of care (see Appendix 1). The National Myeloma 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 broadly follow the format of the Standards of Service Provision for Lung Cancer Patients in New Zealand.

The 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.

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.

Standards of Service Provision for Myeloma Patients in New Zealand - 3 Provisional 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 myeloma in the following ways.

 Practitioners will focus on potential points of delay in diagnosis and management for Māori and Pacific people.

 Timely access will improve access to diagnosis and treatment for all patients, including Māori and Pacific. Ethnicity data will be collected on all access measures, 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 health professionals involved in patient care.

 Family/whānau will be involved in care coordination and supportive care.

 Ethnicity data will be used to inform future monitoring requirements.

Summary of the clinical standards for the management of myeloma 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 either supported by the international literature, the opinion of the National Myeloma Tumour Standard Working Group or the consensus of feedback from consultation with New Zealand clinicians involved in providing care to patients with myeloma. Also attached to each cluster are the Ministry of Health’s requirements of DHBs in terms of monitoring of the individual standards.

4 Standards of Service Provision for Myeloma Patients in New Zealand - Provisional Standards of service provision pathway

Summary of standards The standards for the management of myeloma 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.

Standards of Service Provision for Myeloma Patients in New Zealand - 5 Provisional Timely access to services Standard 1.1: Patients referred urgently with a high suspicion of myeloma receive their first cancer treatment or other management within 62 days. Standard 1.2: Patients referred urgently with a high suspicion of symptomatic myeloma have their first specialist assessment (FSA) within 14 days. Standard 1.3: Patients with a confirmed diagnosis of myeloma receive their first cancer treatment or other management within 31 days of the decision to treat. Standard 1.4: Patients needing systemic therapy or radiotherapy receive their first treatment within four weeks of the decision to treat.

Referral and communication Standard 2.1: Patients with suspected myeloma 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 myeloma, 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, National Health Index (NHI) number and contact details, and are ideally electronic.

Investigation, diagnosis and staging Standard 3.1: Patients with myeloma have access to any diagnostic techniques which may change management of their disease. Standard 3.2: Imaging investigations follow standardised imaging pathways agreed to by New Zealand cancer treatment centres based on International Myeloma Working Group consensus guidelines. Standard 3.3: All patients with a provisional diagnosis of myeloma have their diagnosis reviewed and confirmed by a specialist haematologist affiliated to a myeloma multidisciplinary meeting (MDM). Standard 3.4: The result of bone marrow examination or other diagnostic histology is recorded in a synoptic format.

Multidisciplinary care Standard 4.1: All patients diagnosed with myeloma 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.

6 Standards of Service Provision for Myeloma Patients in New Zealand - Provisional Supportive care Standard 5.1: All patients with myeloma 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 6.1: All patients with myeloma have access to a haemotology clinical nurse specialist or other health professional who is a member of the MDM to help coordinate all aspects of their care.

Treatment Standard 7.1: Transplant-eligible patients have autologous stem cells collected after induction therapy, and when a decision to transplant is made, as part of either early or delayed treatment, transplant follows within four to six weeks. Standard 7.2: First-line therapy for non-transplant-eligible patients consists of systemic therapy with one or several agents, depending on patient comorbidities. Standard 7.3: At relapse, second and subsequent lines of therapy are offered, if appropriate, with one or several agents, depending on patient comorbidities. Standard 7.4: Treatment plans allow for immediate assessment and delivery of radiotherapy in emergency situations, such as spinal cord compression. Standard 7.5: 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 multidisciplinary team (MDT), working in conjunction with the patient, their family/whānau and their GP. Standard 8.2: Follow-up of myeloma patients is managed with an appropriate combination of primary and secondary care.

Clinical performance monitoring and research Standard 9.1: Data relating to myeloma 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 myeloma are offered the opportunity to participate in appropriate clinical trials where these are available.

Standards of Service Provision for Myeloma Patients in New Zealand - 7 Provisional 1 Timely Access to Services

Standard 1.1 Patients referred urgently with a high suspicion of myeloma receive their first cancer treatment or other management within 62 days. Standard 1.2 Patients referred urgently with a high suspicion of symptomatic myeloma have their FSA within 14 days. Standard 1.3 Patients with a confirmed diagnosis of myeloma receive their first cancer treatment or other management within 31 days of the decision to treat. Standard 1.4 Patients needing systemic therapy or radiotherapy 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 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 clinical care

 patients are managed through the pathway and experience well-coordinated service delivery

 delays are avoided as far as possible.

Shorter waits for cancer treatments (Standard 1.4) is a government health target for all radiation treatment patients and chemotherapy patients. 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.

Timely access to services is especially important to address inequities. It is well demonstrated that Māori tend to wait longer for cancer care. A major goal of these standards is to address this issue.

8 Standards of Service Provision for Myeloma Patients in New Zealand - Provisional Good practice points

1.1 Laboratory and imaging reports are received by the referrer within one working day of the report being available.

1.2 Reports are distributed electronically.

1.3 Patients with MGUS may be identified and often managed entirely within primary care (unless they fall into a high-risk category).

1.4 General practitioners refer patients to haematology services within one working day of receiving diagnostic results strongly suggesting myeloma requiring urgent treatment (eg, paraprotein with deteriorating renal failure or suggestion of spinal cord compression).

1.5 Patients with myeloma-related renal failure receive early aggressive treatment.

1.6 Systems are developed at a local level to manage the further investigation and treatment of patients with monoclonal proteins who are not likely to have myeloma and may be managed in primary care.

1.7 Practitioners are alert to potential points of delay in the diagnosis and management of Māori and Pacific Island peoples, who tend to wait longer for cancer care.

Monitoring requirements

MR1A Track FCT indicators. MR1B Collect and analyse ethnicity data on all access targets and indicators.

Standards of Service Provision for Myeloma Patients in New Zealand - 9 Provisional 2 Referral and Communication

Standard 2.1 Patients with suspected myeloma 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 myeloma, 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, NHI number and contact details, and are ideally electronic.

Rationale The purpose of the referral pathway is to ensure that all patients with suspected myeloma are referred to the most appropriate health care service provider (a haematologist), and that appropriate standardised information is available in the referral.

Good communication skills are fundamental to the development of an effective relationship between a patient and health practitioners.

Good communication is likely to reduce anxiety, and increase patients’ trust and confidence in cancer care providers. This will increase the chance that they receive the treatment that is most appropriate for them. Good information may improve compliance with treatment, reduce complaints and enhance health outcomes.

Increased health literacy levels through effective health education resources may contribute to the protection of patient safety, improved health outcomes and the empowerment of patients and family/whānau to increase control over their health and wellbeing. As indicated in Rauemi Atawhai: A guide to developing health education resources in New Zealand (Ministry of Health 2012c), a person with a good level of health literacy is able to find, understand and evaluate health information and services easily, and consequently make effective health decisions.

Communications with other health care professionals There should be rapid and effective two-way information flow between service providers transferring and sharing information on referral, diagnosis, treatment, follow-up and supportive/palliative care.

10 Standards of Service Provision for Myeloma Patients in New Zealand - Provisional Good practice points

2.1 Most patients who appear to have MGUS do not require referral, as most will not progress to myeloma. Patients with MGUS receive long-term monitoring in primary care and referral in the case of suspected myeloma.

2.2 Patients with suspected spinal cord compression, hypercalcaemia or renal failure are referred within one day.

2.3 Referrals include all relevant available laboratory and imaging results.

2.4 Triaging haematologists receive relevant information to prioritise patient assessment and offer treatment, and for prognostic purposes. (See Recommended GP referral form at Appendix 4.)

MR2A Provide evidence of clear and accessible referral pathways. MR2B Audit actual patient pathways through registrations of referral, FSAs, dates of diagnosis and first cancer treatments. MR2C Audit correspondence between secondary/tertiary care and GPs. MR2D Provide evidence of culturally appropriate patient and family/whānau satisfaction surveys, and audit complaints processes. MR2E Audit documentation between health care providers.

Standards of Service Provision for Myeloma Patients in New Zealand - 11 Provisional 3 Investigation, Diagnosis and Staging

Standard 3.1 Patients with myeloma have access to any diagnostic techniques which may change management of their disease. Standard 3.2 Imaging investigations follow standardised imaging pathways agreed to by New Zealand cancer treatment centres based on International Myeloma Working Group consensus guidelines. Standard 3.3 All patients with a provisional diagnosis of myeloma have their diagnosis reviewed and confirmed by a specialist haematologist affiliated to a myeloma MDM. Standard 3.4 The result of bone marrow examination or other diagnostic histology is recorded in a synoptic format.

Rationale Successful treatment of myeloma depends on accurate diagnosis and staging. Delays in investigation and inappropriate or inaccurate imaging and biopsies can have a profound negative effect on prognosis.

Good practice points

3.1 Monoclonal gammopathy of uncertain significance, myeloma, solitary plasmacytoma of bone and other plasma cell neoplasms are diagnosed according to International Myeloma Working Group criteria (2003). These depend on detection and quantification of monoclonal immunoglobulin or monoclonal light chains in serum and urine, on plasma cell estimation in marrow and possibly biopsy of bone or soft tissue lesions, and on assessment of end organ damage such as anaemia, renal failure and hypercalcaemia.

3.2 The initial test for suspicion of myeloma is usually detection of monoclonal immunoglobulin by electrophoresis. High-resolution serum protein electrophoresis is followed by immunofixation to confirm and type any monoclonal protein. Quantification is best done by densitometry, but capillary zone electrophoresis is equally valid. Technical aspects and reporting is consistent with Australian Working Party recommendations on standardised reporting of protein electrophoresis (Tate et al 2012).

3.3 Testing of concentrated urine for free light chains is usually recommended as part of initial myeloma screening, especially if there is no monoclonal protein on serum protein electrophoresis. A case can be made for measuring serum free light chains (SFLC) and dispensing with urinary studies.

3.4 Serum free light chains assessment is considered to stratify MGUS patients for risk of progression to myeloma, and to monitor patients with oligosecretory disease or primary amyloid. SFLC are indicated for the routine monitoring of myeloma where no immunoglobulin is secreted.

12 Standards of Service Provision for Myeloma Patients in New Zealand - Provisional 3.5 Asymptomatic patients with low-level immunoglobulin detected incidentally are likely to have MGUS, and may not require bone marrow examination and imaging tests. Further monitoring and follow-up for such patients is defined and agreed between local DHB haematology services and primary care.

3.6 If myeloma is suspected, a bone marrow examination with aspirate and trephine biopsy is performed. Plasma cells are enumerated by direct examination in aspirates, and by use of immunochemistry staining in the trephine. The burden of plasma cells can distinguish between MGUS and myeloma. Flow cytometry may also be used to distinguish clonality.

3.7 Patients with certain chromosome aberrations, including t(4;14), t(14;16), del17p13 and 1q21 amplification, are at higher risk of treatment failure. Fluorescence in situ hybridization (FISH) is used to screen for these abnormalities if it influences management, to provide an accurate prognosis and to allow treatment outcomes to be compared between groups of patients with different prognoses.

3.8 Skeletal survey remains the standard method for imaging screening at diagnosis. Such surveys should include all areas of possible myeloma involvement, such as the cervical, thoracic and lumbar spine, skull, chest, pelvis, humeri and femora (Dimopoulos et al 2009).

3.9 Computed tomography (CT) is considered as an alternative imaging technique early in diagnosis, especially for biopsy or radiotherapy planning and in symptomatic patients with normal conventional X-rays.

3.10 Magnetic resonance imaging (MRI) is used for the investigation of suspected cord compression.

3.11 MRI or positron emission tomography (PET) is used to confirm suspected solitary plasmocytoma.

3.12 MRI or PET may have roles in other myeloma settings; these are considered on a case-by-case basis.

3.13 All patients with myeloma are staged according to the International Staging System (Griepp et al 2005).

3.14 All patients with a provisional diagnosis of myeloma have their diagnosis reviewed and confirmed at a myeloma MDM.

3.15 Patients, particularly Māori and Pacific patients, are given the option of retaining tissue postoperatively (NZGG 2009).

MR3A Ensure that radiology departments demonstrate written evidence of standardised imaging protocols. MR3B Ensure that MDMs provide evidence of appropriate radiological imaging. MR3C Ensure that MDMs provide evidence of pathological review and confirmation.

Standards of Service Provision for Myeloma Patients in New Zealand - 13 Provisional MR3D Audit pathology departments’ register of synoptic reports. MR3E Ensure that MDMs audit pathology reviews. MR3F Ensure that MDMs provide records of all patient staging prior to treatment.

14 Standards of Service Provision for Myeloma Patients in New Zealand - Provisional 4 Multidisciplinary Care

Standard 4.1 All patients diagnosed with myeloma 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.

As many centres only see a small number of new myeloma patients annually, a stand-alone myeloma MDM may not always be feasible. Centres should consider the addition of myeloma patients to a haematology or lymphoma MDM and the use of videoconferencing technology to link with the closest available myeloma MDM.

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 2012a) 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 are discussed at the MDM.

4.4 A role representing a single point of coordination for MDMs is established, to support clinicians participating. Treatment recommendations agreed by participants are documented during the meeting and recorded in patients’ medical records.

Standards of Service Provision for Myeloma Patients in New Zealand - 15 Provisional 4.5 Myeloma-specific core data are 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.

4.10 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.

MR4A Ensure that MDMs audit treatment recommendations and associated communications.

16 Standards of Service Provision for Myeloma Patients in New Zealand - Provisional 5 Supportive Care

Standard 5.1 All patients with myeloma 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 Leukaemia & Blood Cancer New Zealand, perform an important role in providing supportive care.

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).

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.

5.8 Information provided to patients may include:

 general background information about myeloma

 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

Standards of Service Provision for Myeloma Patients in New Zealand - 17 Provisional  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.

5.9 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.

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.

18 Standards of Service Provision for Myeloma Patients in New Zealand - Provisional 6 Care Coordination

Standard 6.1 All patients with myeloma 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.

Rationale The myeloma 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 haematological cancers such as myeloma and lymphoma 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 their diagnosis. This person is the single point of contact for patients and their family/whānau throughout the myeloma 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 from the multidisciplinary team or a primary care team member, 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.

MR6A Routinely review patient complaints and feedback across services. MR6B Audit referrals to appropriate cancer non-government organisation. MR6C Ensure that MDMs provide records of identified care coordinators. MR6D Audit patient records and clinical notes on contact points between care coordinators and patients.

Standards of Service Provision for Myeloma Patients in New Zealand - 19 Provisional 7 Treatment

Standard 7.1 Transplant-eligible patients have autologous stem cells collected after induction therapy, and when a decision to transplant is made, as part of either early or delayed treatment, transplant follows within four to six weeks. Standard 7.2 First-line therapy for non-transplant-eligible patients consists of systemic therapy with one or several agents, depending on patient comorbidities. Standard 7.3 At relapse, second and subsequent lines of therapy are offered, if appropriate, with one or several agents, depending on patient comorbidities. Standard 7.4 Treatment plans allow for immediate assessment and delivery of radiotherapy in emergency situations, such as spinal cord compression. Standard 7.5 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 Active anti-myeloma therapy controls symptoms, improves quality of life and prolongs survival. However, except in very young patients treated with myeloablative allogenic transplant, treatment of myeloma is not given with curative intent, but aims to decrease the burden of disease as much and for as long as possible. Many patients with myeloma are older, and may have other diseases, so tolerability of treatment is an important consideration.

Patients with myeloma can be expected to eventually relapse after first-line therapy, and at relapse most patients require second and subsequent lines of therapy.

The development of disease refractory to systemic therapy and the adverse effects of systemic therapy are such that eventually further systemic therapy becomes inappropriate.

Treatment has changed considerably in the last two decades, especially for younger patients. New agents have been introduced into the treatment pathway in New Zealand; others are licensed in New Zealand though not funded; and several others are anticipated.

A diagnosis of myeloma 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 should expect to be offered optimal symptom control and psychological, social and spiritual support.

20 Standards of Service Provision for Myeloma Patients in New Zealand - Provisional Most patients with myeloma ultimately die of their disease. Many will experience a significant symptom burden during their cancer journey. The role of palliative care in patients with myeloma is important. Palliative care interventions can prolong survival for some myeloma patients.

Good practice points Systemic therapy

7.1 First-line therapy is usually provided through a multidrug systemic therapy induction.

7.2 Peripheral blood stem cell transplant (PBSCT) is recommended as part of first-line therapy for transplant-eligible patients responding to induction therapy. Suitable patients are referred to a transplant centre as soon as their diagnosis is established.

7.3 Some patients may elect to defer transplant until relapse.

7.4 Second and subsequent lines of therapy, where necessary dose modified to reduce toxicity, are similar to first-line therapies. Such treatments are offered until they are no longer effective.

Radiation therapy

7.5 Radiation therapy is used in conjunction with systemic therapy when localised sites of myeloma are causing or likely to cause symptoms such as spinal cord compression or pathological fracture.

Surgery

7.6 Surgery may be necessary for fixation or prevention of pathological fracture.

7.7 Patients, particularly Māori and Pacific patients, are given the option of retaining tissue postoperatively (NZGG 2009).

Palliative care

7.8 Palliative care is available to all patients diagnosed with myeloma, based on need and independent of current health status, age, cultural background or geography.

7.9 Palliative care is provided in accordance with Hospice New Zealand’s Standards for Palliative Care (2012) and using an end-of-life-care pathway.

7.10 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.

Standards of Service Provision for Myeloma Patients in New Zealand - 21 Provisional Monitoring requirements

MR7A Monitor patients identified by the MDM as transplant-eligible who proceed to PBSCT. MR7B Audit records of proposed plans of care, onward referrals and follow-up responsibilities recorded at MDM reviews and in patients’ notes.

22 Standards of Service Provision for Myeloma Patients in New Zealand - Provisional 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 Follow-up of myeloma patients is managed with an appropriate combination of primary and secondary care.

Rationale Most patients with myeloma are not cured, and take a remitting and relapsing course, which requires continuing supportive care and successive cycles of specific anti-myeloma therapy. In recent years an evolving array of effective treatments for myeloma has increased clinicians’ ability to achieve disease control repeatedly, to the extent that myeloma now has the potential to be a managed as a chronic disease. This evolution presents problems in terms of both cost and capacity. One solution is that selected patients receive longer-term management using a combination of primary and secondary care.

Within the secondary care setting, development of nurse-led clinics for myeloma patients may result in better use of consultant time, reduced waiting times and increased continuity of care.

Good practice points 8.1 Centres consider assigning specialist nurses to a nurse-led clinic to follow up patients with myeloma. Such nurses are qualified to monitor patients, perform nursing interventions and provide education and psychological support. They may liaise with GPs and other health care providers. 8.2 Where a GP is responsible for long-term follow-up, a documented agreed assessment and investigation plan is in place. 8.3 A comprehensive treatment summary and advance care plan are included when referring a patient to the nurse-led clinic or to a GP. 8.4 Monitoring of patients is routinely carried out, to detect disease progression before irreversible complications (such as spinal cord compression, lytic bone lesions and renal failure) develop and allow for pre-emptive treatment. 8.5 GPs discuss Green Prescriptions1 as part of the follow-up plan.

MR8A Review the percentage of patients who have received written follow-up plans. MR8B Audit written follow-up information provided following agreed surveillance protocols.

1 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 Myeloma Patients in New Zealand - 23 Provisional 9 Clinical Performance Monitoring and Research

Standard 9.1 Data relating to myeloma 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 myeloma are offered the opportunity to participate in appropriate 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 9.1 Patients are informed that their information is being recorded in a myeloma 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 Myeloma-specific data elements include patients’ International Staging System stage and genetic risk group, if available. 9.4 Information concerning all clinical trials being conducted in New Zealand hospitals is made available to patients and clinicians. 9.5 Patients suitable for myeloma 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.

MR9A Provide evidence of the reporting of data sets to national data repositories (as available) at agreed frequencies. MR9B Ensure that MDMs provide documentation of all open trials/research projects, and numbers of patients entered per trial per year. MR9C Use data collected to research the issue of which health equity issues are most important in myeloma management.

24 Standards of Service Provision for Myeloma Patients in New Zealand - Provisional Appendix 1: National Myeloma Tumour Standards Working Group Membership

Chair Dr Peter Ganly, Haematologist, Canterbury DHB

Members Dr Brendon Anderson, Radiation Oncologist, Canterbury DHB Dr Robin Bowman, General Practitioner, Christchurch Dr Mark Coates, Radiologist, Canterbury DHB Dr Michael Crooke, Chemical Pathologist, Capital & Coast DHB Sharron Ellis, Clinical Nurse Specialist, Haematology, Canterbury DHB Bevan Harden, Haematology Pharmacist, Canterbury DHB Dr Colin Hutchison, Renal Physician, Hawke’s Bay DHB Amy Munro, Support Services Manager, Leukaemia & Blood Cancer New Zealand Toni Nicholson, Oncology Social Worker, MidCentral DHB Dr Ken Romeril, Haematologist, Capital & Coast DHB Alison Rowe, Clinical Nurse Specialist, Palliative Care, Capital & Coast DHB Dr Myra Ruka, Medical Registrar, Waikato DHB Robin Segedin, Clinical Nurse Specialist, Haematology, Waikato DHB Dr David Simpson, Haematologist, Waitemata DHB Dr Lois Surgenor, Clinical Psychologist, University of Otago David Swallow, Consumer Representative Stephanie Turner, Director of Māori Health, Wairarapa DHB

Advisors and stakeholders Dr Bart Baker, Clinical Director of Haematology, MidCentral DHB Dr Gordon Beadel, Orthopaedic Surgeon, Canterbury DHB Dr Gillian Corbett, Clinical Director of Haematology, Waikato DHB Dr Charles De Groot, Radiation Oncologist, Waikato DHB Dr Liam Fernyhough, Haematologist, Canterbury DHB Dr Kate Grundy, Palliative Care Physician, Canterbury DHB Sheldon Ngatai, Consumer Representative Maz Stafford, Dietitian, MidCentral DHB

Standards of Service Provision for Myeloma Patients in New Zealand - 25 Provisional Appendix 2: Glossary

Advance care A process of discussion and shared planning for future health care planning Allied health One of the following groups of health care workers: professional 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 The cumulative cancer-specific services that a person with cancer pathway 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 A medical imaging technique using X-rays to create cross-sectional tomography (CT) slices through the body part being examined Confirmed The preferred basis of a confirmed cancer diagnosis is pathological, diagnosis (used in noting that for a small number of patients cancer diagnosis will be FCT indicators) based on diagnostic imaging findings Consumer A user of services Curative Aiming to cure a disease Decision to treat A decision to begin a patient’s treatment plan or other management (used in FCT plan, following discussion between the patient and treating clinician indicators) DHB District Health Board

26 Standards of Service Provision for Myeloma Patients in New Zealand - Provisional 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 A Ministry of Health programme that will improve services by Treatment (FCT) standardising care pathways and timeliness of services for cancer patients throughout New Zealand Faster Cancer Measures of cancer care collected through DHB reporting of Treatment timeframes within which patients with a high suspicion of cancer indicators access services. The indicators are internationally established and provide goals for DHBs to achieve over time First specialist Face-to-face contact (including telemedicine) between a patient and assessment (FSA) a registered medical practitioner or nurse practitioner for the purposes of first assessment for their condition for that specialty First treatment The treatment or other management that attempts to begin the (used in FCT patient’s first treatment, including palliative care indicators) GP General practitioner 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 Absence of unnecessary, avoidable and unjust differences in health equality/equity (Ministry of Health 2002) Health Differences in health that are unnecessary, avoidable or unjust inequality/inequity (Ministry of Health 2002) High suspicion of Where a patient presents with clinical features typical of cancer, or cancer (used in has less typical signs and symptoms but the clinician suspects that FCT indicators) there is a high probability of cancer 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 life-threatening conditions make the most of their lives by providing high-quality palliative and supportive care Lesion An area of abnormal tissue Magnetic A non-invasive method of imaging, which allows the form and resonance imaging metabolism of tissues and organs to be visualised (also known as (MRI) nuclear magnetic resonance) 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

Standards of Service Provision for Myeloma Patients in New Zealand - 27 Provisional Metastases Cancerous tumours in any part of the body that have spread from the original (primary) origin. Also known as ‘secondaries’ Multidisciplinary A deliberate, regular, face-to-face meeting (which may be through meeting (MDM) 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 A group of specialists in a given disease area. The MDT meets team (MDT) regularly to plan aspects of patient treatment. Individual patient cases might be discussed at an MDM, to best plan approach to treatments National Health A unique identifier for New Zealand health care users Index (NHI) number 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 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 treatment journey PBSCT Peripheral blood stem cell transplant Positron emission A highly specialised imaging technique using a radioactive tracer to tomography (PET) 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 Primary care Primary-level health services provided by a range of health workers, including GPs and nurses Prognosis A prediction of the likely outcome or course of a disease; the chance of recovery or recurrence Radiation A person who is registered as a medical practitioner by the relevant oncologist 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

28 Standards of Service Provision for Myeloma Patients in New Zealand - Provisional Radiology The use of radiation (such as X-rays, ultrasound and magnetic resonance) to create images of the body for diagnosis Radiotherapy The use of ionising radiation, usually X-rays or gamma rays, to kill (radiation cancer cells and treat tumours treatment) Randomised A study in which people are allocated by chance alone to receive controlled trial one of several interventions, one of which is the standard of comparison Referred urgently Describes urgent referral of a patient to a specialist because he or (used in FCT she presents with clinical features indicating high suspicion of indicators) 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 Toxicity Refers to the undesirable and harmful side-effects of a drug Ultrasound A non-invasive technique using ultrasound waves (high-frequency 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 Myeloma Patients in New Zealand - 29 Provisional Appendix 3: The Myeloma Patient Pathway

30 Standards of Service Provision for Myeloma Patients in New Zealand - Provisional Appendix 4: Recommended GP Referral Form

Surname:...... Given names:...... DOB: ...... Sex:...... GP NEW PATIENT NHI:...... REFERRAL FORM MYELOMA Address:...... Contact details:...... Interpreter required: Yes  No 

Referring clinician details: Name:...... Usual GP if different:...... Phone:...... Fax:...... Practice address:...... Date of referral:......

Patient details: Reason for referral, eg, anaemia and monoclonal protein:...... History of condition causing concern, eg, bone pain:......

Significant co-morbidities:...... Examination findings:...... Options already pursued:...... Current medications:...... Allergies:...... Other important information, eg, psychosocial factors......

Standards of Service Provision for Myeloma Patients in New Zealand - 31 Provisional Work-up: investigations and procedures Please provide reports of all investigations undertaken when submitting this form. Yes No Pending

FBC and blood film    Calcium    Creatinine    Albumin    SPE with Ig levels    SFLC    Beta 2 microglobulin    Skeleton survey and/or other imaging    NB Bence Jones proteins are no longer routinely measured; this should not be done in primary care.

Urgency of referral

 Arrange urgent (same day) referral if there is suspected spinal cord compression, hypercalcaemia or renal failure.

 For urgent advice, phone the on-call haematologist for new patients.

32 Standards of Service Provision for Myeloma 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.

BCSH and United Kingdom Myeloma Foundation. 2012. Guidelines on the Management and Diagnosis of Myeloma. London: British Committee for Standards in Haematology and United Kingdom Myeloma Foundation. Central Cancer Network. 2010. Imaging Guidelines in Cancer Management. Palmerston North: Central Cancer Network. Harris NL, Jaffe ES, Diebold J, et al. 2000. The World Health Organization classification of neoplastic diseases of the haematopoietic and lymphoid tissues: Report of the Clinical Advisory Committee Meeting, Airlie House, Virginia, November 1997. Histopathology 36(1): 69–86. Medical Scientific Group to the Myeloma Foundation of Australia. 2011. Myeloma Clinical Practice Guideline. Richmond: Medical Scientific Group to the Myeloma Foundation of 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 and Action Plan 2005–2010. 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. 2011a. Bone Marrow Transplant Services in New Zealand for Adults – Service Improvement Plan. Wellington: Ministry of Health. Ministry of Health. 2011c. Radiation Oncology Prioritisation Guidelines. URL: www.midlandcancernetwork.org.nz/file/fileid/44264 (accessed 6 August 2013). Ministry of Health. 2011d. 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. Ministry of Health. 2013. Faster Cancer Treatment Programme. URL: www.health.govt.nz/our-work/diseases-and-conditions/cancer-programme/faster-cancer- treatment-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. Snowden JA, Ahmedzai SH, Ashcroft J, et al. 2011. Guidelines for supportive care in multiple myeloma 2011. British Journal of Haematology 154(1): 76–103.

Standards of Service Provision for Myeloma Patients in New Zealand - 33 Provisional Tate J, et al. 2012. Recommendations for Standardised Reporting of Protein Electrophoresis in Australia and New Zealand. Annual Journal of Clinical Biochemistry 49(3): 242–56.

Introduction Fernyhough LJ, Hock BD, Taylor J, et al. 2013. Survival of myeloma patients following the introduction of thalidomide as a second-line therapy: a retrospective study at a single New Zealand centre. Internal Medicine Journal 43(2): 130–7. Ministry of Health. 2002. Reducing Inequalities in Health. Wellington: Ministry of Health. Ministry of Health. 2010b. Unequal Impact II: Māori and Non-Māori Cancer Statistics by Deprivation and Rural-Urban Status, 2002–2006. 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 Ministry of Health. 2011b. Haematology Prioritisation Criteria. www.nsfl.health.govt.nz/apps/nsfl.nsf/pagesmh/445/$File/Haem+Prioritisation+Criteria+July+ 2011.doc (accessed 21 August 2013). Ministry of Health. 2011c. Radiation Oncology Prioritisation Guidelines. URL: www.midlandcancernetwork.org.nz/file/fileid/44264 (accessed 6 August 2013). Ministry of Health. 2012b. Medical Oncology Prioritisation Criteria. URL: www.nsfl.health.govt.nz/apps/nsfl.nsf/pagesmh/401 (accessed 6 August 2013). 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).

Referral and communication Ministry of Health. 2009. About Elective Services Patient Flow Indicators. URL: www.health.govt.nz/our-work/hospitals-and-specialist-care/elective-services/elective- services-and-how-dhbs-are-performing/about-elective-services-patient-flow-indicators (accessed 16 August 2013). Ministry of Health. 2012c. Rauemi Atawhai: A guide to developing health education resources in New Zealand. Wellington: Ministry of Health.

Investigation, diagnosis and staging Bird JM, Owen RG, D’Sa S, et al. 2011. Guidelines for the diagnosis and management of multiple myeloma 2011. British Journal of Haematology 154(1): 32–75. Dimopoulos M, Kyle R, Fermand JP, et al. 2011. Consensus recommendations for standard investigative workup: report of the International Myeloma Workshop Consensus Panel 3. Blood 117(18): 4701–5.

34 Standards of Service Provision for Myeloma Patients in New Zealand - Provisional Dimopoulos, M, Terpos E, Comenzo RL, et al. 2009. International myeloma working group consensus statement and guidelines regarding the current role of imaging techniques in the diagnosis and monitoring of myeloma. Leukemia 23(9): 1545–56. Dispenzieri A, Kyle R, Merlini G, et al. 2009. International Myeloma Working Group guidelines for serum-free light chain analysis in multiple myeloma and related disorders. Leukemia 23(2): 215–24. Griepp PR, San Miguel J, Durie BGM, et al. 2005. International staging system for multiple myeloma. Journal of Clinical Oncology 23(15): 3412–20. International Myeloma Working Group. 2003. Criteria for the classification of monoclonal gammopathies, multiple myeloma and related disorders. British Journal of Haematology 121(5): 749–57. NICE. 2003. Guidance on Cancer Services: Improving Outcomes in Haematological Cancers. London: National Institute for Clinical Excellence. NZGG. 2009. Suspected Cancer in Primary Care: Guidelines for investigation, referral and reducing ethnic disparities. Wellington: New Zealand Guidelines Group. Rajkumar SV, Kyle RA, Therneau TM, et al. 2005. Serum free light chain ratio is an independent risk factor for progression in monoclonal gammopathy of undetermined significance. Blood 106(3): 812–17. RCR. 2012. Evidence-based indications for the use of PET-CT in the United Kingdom 2012. London: Royal College of Radiologists. Ross FM, Avet-Loiseau H, Ameye G, et al. 2012. Report from the European Myeloma Network on interphase FISH in myeloma and related disorders. Haematologica 97(8): 1272–7. Tate J, Caldwell G, Daly J, et al. 2012. Recommendations for standardized reporting of protein electrophoresis in Australia and New Zealand. Annals of Clinical Biochemistry 49: 242–56.

Multidisciplinary care Ministry of Health. 2012a. Guidance for Implementing High-Quality Multidisciplinary Meetings: Achieving Best practice cancer care. Wellington: Ministry of Health. NHS National Cancer Action Team. 2010. The Characteristics of an Effective Multidisciplinary Team. London: NHS National Cancer Action Team.

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-travel- assistance-scheme-your-guide-claiming-travel-assistance-brochure (accessed 14 August 2013). Ministry of Health. 2010a. Guidance for Improving Supportive Care for Adults with Cancer 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. NICE. 2004. Guidance on Cancer Services: Improving Supportive and Palliative Care for Adults with Cancer. London: National Institute for Clinical Excellence.

Standards of Service Provision for Myeloma Patients in New Zealand - 35 Provisional Snowden JA, Ahmedzai SH, Ashcroft J, et al. 2011. Guidelines for supportive care in multiple myeloma 2011. British Journal of Haematology 154(1): 76–103.

Care coordination Ministry of Health. 2010a. Guidance for Improving Supportive Care for Adults with Cancer in New Zealand. Wellington: Ministry of Health. Ministry of Health. 2012c. 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. NHS Wales. 2005. National Standards for Haemotological Cancer Services. Cardiff: NHS Wales. NICE. 2004. Guidance on Cancer Services: 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.

Treatment Bird JM, Owen RG, D’Sa S, et al. 2011. Guidelines for the diagnosis and management of multiple myeloma 2011. British Journal of Haematology 154(1): 32–75. Giralt S, Stadtmauer EA, Harousseau JL, et al. 2009. International myeloma working group (IMWG) consensus statement and guidelines regarding the current status of stem cell collection and high-dose therapy for myeloma and the role of plerixafor (AMD 3100). Leukemia 23(10): 1904–12. Hospice New Zealand. 2012. Standards for Palliative Care: Quality review programme and guide. Wellington: Hospice New Zealand. Koreth J, Cutler CS, Djulbegovic B, et al. 2007. High-dose therapy with single autologous transplantation versus chemotherapy for newly diagnosed multiple myeloma: A systematic review and meta-analysis of randomized controlled trials. Biology of Blood and Marrow Transplantation 13(2): 183–96. Liverpool Care Pathway. 2009. New Zealand Integrated Care Pathway for the Dying Patient. http://lcpnz.org.nz/pages/home (accessed 16 August 2013). Lokhorst H, Einsele H, Vesole D, et al. 2010. International Myeloma Working Group consensus statement regarding the current status of allogeneic stem-cell transplantation for myeloma. Journal of Clinical Oncology 28(29): 4521–30. Ministry of Health. 2011a. Bone Marrow Transplant Services in New Zealand for Adults – Service Improvement Plan. Wellington: Ministry of Health. NCCN. 2012. NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) – Palliative Care. Fort Washington: National Comprehensive Cancer Network (member access only). NICE. 2004. Guidance on Cancer Services: Improving Supportive and Palliative Care for Adults with Cancer. London: National Institute for Clinical Excellence.

36 Standards of Service Provision for Myeloma Patients in New Zealand - Provisional NZGG. 2009. Suspected Cancer in Primary Care: Guidelines for investigation, referral and reducing ethnic disparities. Wellington: New Zealand Guidelines Group. Palliative Care Australia. 2005. Standards for Providing Quality Palliative Care for all Australians. Canberra: Palliative Care Australia. Palumbo A, Sezer O, Kyle R, et al. 2009. International Myeloma Working Group guidelines for the management of myeloma patients ineligible for standard high-dose chemotherapy with autologous stem cell transplantation. Leukemia 23(10): 1716–30. San Miguel JF. 2009. Relapse/Refractory Myeloma Patient: Potential Treatment Guidelines. Journal of Clinical Oncology 27(34): 5676–7. Snowden JA, Ahmedzai SH, Ashcroft J, et al. 2011. Guidelines for supportive care in multiple myeloma 2011. British Journal of Haematology 154(1): 76–103.

Follow-up and surveillance Bird JM, Owen RG, D’Sa S, et al. 2011. Guidelines for the diagnosis and management of multiple myeloma 2011. British Journal of Haematology 154(1): 32–75. Harousseau JL, Dreyling M. 2010. Multiple myeloma: ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up. Annals of Oncology 21(5): v155–7. Hatchett R. 2003. Nurse-Led Clinics: Practice Issues. New York: Routledge. NICE. 2003. Guidance on Cancer Services: Improving Outcomes in Haematological Cancers. London: National Institute for Clinical Excellence. Snowden JA, Ahmedzai SH, Ashcroft J, et al. 2011. Guidelines for supportive care in multiple myeloma 2011. British Journal of Haematology 154(1): 76–103.

Clinical performance monitoring and research IT Health Board. 2011. National Cancer Core Data Definitions, Interim Standard, HISO 10038.3. Wellington: IT Health Board.

Appendices Ministry of Health. 2002. Reducing Inequalities in Health. Wellington: Ministry of Health.

Standards of Service Provision for Myeloma Patients in New Zealand - 37 Provisional