Standards of
Service Provision for Sarcoma Patients
in New Zealand–Provisional
National Sarcoma Tumour Standards Working Group
2013
Citation: National Sarcoma Tumour Standards Working Group. 2013. Standards of Service Provision for Sarcoma 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
ISBN978-0-478-41542-1 (online)
HP 5745
This document is available through the Ministry of Health website:
or from the regional cancer network websites:
cancernetwork.org.nz
Contents
Introduction......
Background......
Objective......
How the sarcoma standards were developed......
Equity and Whānau Ora......
Summary of the clinical standards for the management of sarcoma services..
Standards of service provision pathway......
Summary of standards......
1Timely Access to Services......
Rationale......
Good practice points......
Rationale......
Good practice points......
2Referral and Communication......
Rationale......
Good practice points......
Rationale......
Good practice points......
Rationale......
Good practice points......
3Investigation, Diagnosis and Staging......
Rationale......
Good practice points......
Rationale......
Good practice points......
Good practice points......
4Multidisciplinary Care......
Rationale......
Good practice points......
Rationale......
Good practice points......
5Supportive Care......
Rationale......
Good practice points......
Rationale......
Good practice points......
Rationale......
Good practice points......
6Care Coordination......
Rationale......
Good practice points......
7Treatment......
Rationale......
Good practice points......
Rationale......
Good practice points......
Good practice points......
Rationale......
Good practice points......
Rationale......
Good practice points......
Rationale......
Good practice points......
Rationale......
Good practice points......
8Follow-up and Surveillance......
Rationale......
Good practice points......
9Clinical Performance Monitoring and Research......
Rationale......
Good practice points......
Rationale......
Good practice points......
Rationale......
Good practice points......
Appendix 1: National Sarcoma Tumour Standards Working Group Membership....
Appendix 2: Glossary......
Appendix 3: The Sarcoma Patient Pathway......
Appendix 4: References......
Standards of Service Provision for Sarcoma Patients in New Zealand–Provisional
Introduction
Background
Sarcomas are a rare form of cancer that can occur in any part of the body and in any age group. They arise from mesodermal tissue, including bone, cartilage, muscle, nerve, blood vessels and fat. They may be high- or low-grade lesions, and are capable of local recurrence as well as regional and distant spread.
Softtissue sarcomas can occur in subcutaneous and deep tissues. They more commonly occur in adulthood, but can occur in any age group, and accounting for 7percent of all paediatric cancer-related deaths. The overall incidence in this country is about three cases per 100,000 population per year; incidence is not increasing significantly over time.
Bone sarcomas are less common: osteosarcoma has an incidence rate of 3–4 per 1,000,000 per year,and a peak incidence in children and adolescents. Ewing’s sarcoma, another bone sarcoma, occurs in 2–3 people per 1,000,000 per year.
While lifestyle factors play a role in the genesis of some cancers, this does not appear to be the case for sarcoma. There are a number of rare genetic conditions that can predispose to the development of sarcoma; for example Li-Fraumeni, neurofibromatosis and hereditary retinoblastoma. Exposure to previous radiation is another rare causative factor.
Because of the rarity of sarcoma, there is often a delay in diagnosis. This, combined with inappropriate treatment, can lead to poorer outcomes. Earlier recognition and referral to specialist treatment centres can lead to improved outcomes in terms of both survival and a reduced need for disabling surgery.
Overall survival of softtissue sarcomas occurs in 50–60percent of cases. It is dependent on a number of factors, including size of the tumour, histological grade and the presence of metastases.
Osteosarcoma has an overall survival rate of 60percent. Local data[1] suggests that there is a trend toward poorer outcomes for Māori in this and Ewing’s sarcoma. The factors behind this are unknown, as there does not appear to be an ethnic bias in incidence for this tumour. It is recognised that inequalities exist between Māori and non-Māori in exposure to the risk and protective factors for cancer (Ministry of Health 2004a), in cancer incidence and cancer outcomes (Ajwani et al 2003), and in access to cancer services (Ministry of Health 2004b). This requires further investigation at a national level.
This document relates to required standards for the management of both adult and child patients for the following:
- bone sarcomas
- soft tissue sarcomas of the extremities, trunk and retroperitoneum
- fibromatosis.
Sarcomas of the head and neck and viscera are not covered in this document; treatment for these conditions should be managed according to the site-specific standards of care.
Objective
Tumour standards for all cancers are being developed as a part of the Ministry of Health’s ‘Faster Cancer Treatment’ (FCT) programme’s approach to ensuring timely clinical care for patients with cancer. 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.
How the sarcoma standards were developed
Thesestandards were developed by a skilled working group representing key specialities and interests across the sarcoma pathway of care (see Appendix 1).
These standards recognise the need for evidence-based practice. Existing evidence-based standards, clinical guidelines and patient pathways were referred to when developing the standards (see Appendix 4). Where no clear evidence was available, expert opinion was obtained through the National Sarcoma Tumour StandardsWorking Group and its advisors.
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 make 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 standards 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).
Equity and Whānau Ora
Health inequity is an avoidable, unnecessary and unjust difference in the health of groups of people (Signal et al 2008). Cancer is a significant health concern for Māori, and has a major and disproportionate impact on Māori communities. In New Zealand, inequalities 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 (Robson and Harris 2007). For sarcoma patients, local data suggest that there is a trend towards poorer outcomes for Māori.
In New Zealand, ethnic identity is an important dimension of health inequalities. Māori health status is demonstrably poorer than for other New Zealanders; actions to improve Māori health also recognise Treaty of Waitangi obligations of the Crown. Pacific peoples also have poorer health than Pākehā. In addition, gender and geographical inequalities are important areas for action.
Barriers to health care are recognised as multidimensional, and include health system and health care factors (eg, institutional values, workforce composition, service configuration and location), as well as patient factors (eg, socioeconomic position, transportation and patient values). Addressing these factors requires a population health approach that takes account of all the influences on health and how they can be tackled to improve health outcomes.
A Whānau Ora approach to health care recognises the interdependence of people; health and wellbeing are influenced and affected by the ‘collective’ as well as the individual. It is important to work with people in their social contexts and not just with their physical symptoms.
The outcome of the Whānau Ora approach in health will be improved health outcomes for family/whānau through quality services that are integrated (across social sectors and within health), responsive and patient/family/whānau-centred.
In preparing these standards, the Northern Cancer Network’s Māori Leadership Group provided expert advice to the Working Group based on eight principles to identify and address issues of equity in access, process and outcome. These principles were specifically a commitment to mana whenua and Māori communities, Whānau Ora, health equity, self-determination, indigeneity, ngā kaupapa tuku iho, whole-of-system responsibility and evidence-based approaches.
Summary of the clinical standards for the management of sarcoma services
Institutional requirements
In order to meet the standards set out in this document, DHBs will need access to adequate infrastructure and to the following appropriately credentialed and staff:
- a surgeon with specific training and experience in sarcoma surgery and with a sufficient sarcoma-specific caseload to maintain surgical expertise
- medical oncologists and systemic therapy-certificated oncology nurses to prescribe, administer and monitor systemic therapy
- radiation oncologists to prescribe and supervise radiotherapy
- an appropriately qualified pathologist to supervise or assess gross specimens and perform microscopic examination
- an appropriately qualified radiologist to carry out diagnostic investigations.
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 Tumour Standards Working Group or the consensus of feedback from consultation with New Zealand clinicians involved in providing care to patients with sarcoma. Also attached to each cluster are the Ministry of Health’s requirements of DHBs in terms of monitoring of the individual standards.
Standards of service provision pathway
Summary of standards
The standards for the management of sarcoma 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 a sarcoma receive their first cancer treatment within 62 days.
Standard 1.2:Patients referred urgently with a high suspicion of a sarcoma have their first specialist assessment (FSA) within 14 days.
Standard 1.3:Patients referred urgently with a high suspicion of sarcoma after a local FSA are reviewed by a sarcoma treatment unit within 14 days.
Standard 1.4:Patients with a confirmed diagnosis of a sarcoma receive their first treatment within 31 days of the decision to treat.
Standard 1.5:Patients needing radiotherapy or systemic therapy receive their first treatment within four weeks of the decisiontotreat.
Referral and communication
Standard 2.1:People with a suspected sarcoma (usually following appropriate imaging) are directly referred to a sarcoma treatment unit for diagnosis and management following a clearly identifiable clinical pathway that is available to primary and secondary care clinicians.
Standard 2.2: Patients and their general practitioners (GPs) are provided with verbal and written information about sarcoma, 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:Imaging investigations for bone and soft tissue sarcoma follow standardised imaging pathways agreed to by regional sarcoma units based on current NCCN guidelines for bone and soft tissue sarcoma and Royal College of Radiologists cancer imaging guidelines.
Standard 3.2:Imaging forstaging is performed and reported within two weeks of referral to radiology services.
Standard 3.3:Imaging from patients with a high probability of a bone or soft tissue sarcoma is reviewed at a regional sarcoma multidisciplinary meeting (MDM) by radiologists with expertise in bone and soft tissue sarcoma.
Standard 3.4:Biopsy of a suspected sarcoma is carried out under the advice and recommendation of a specialist sarcoma surgeon who is responsible for the definitive tumour resection.
Standard 3.5:All patients with a provisional histological diagnosis of a bone or soft tissue sarcoma have their diagnosis reviewed and confirmed by a specialist sarcoma pathologist affiliated to a sarcoma MDM.
Standard 3.6:The histology of excised sarcoma specimens is recorded in a synoptic format.
Multidisciplinary care
Standard 4.1:All patients with the following confirmed sarcomas are presented at a sarcoma MDM:
- bone sarcoma
- soft tissue sarcoma of extremities, trunk and retroperitoneum.
Standard 4.2:Patients with fibromatosis are managed by a sarcoma multidisciplinary team (MDT).
Supportive care
Standard 5.1:Patients with a sarcoma 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).
Standard 5.2:Patients who have had a limb amputated to treat their sarcoma are offered rapid and easy access to prosthetic services, and a prosthesis that suits their needs.
Standard 5.3:Patients have access to appropriate rehabilitation services, including physiotherapy, occupational therapy, and chronic pain and lymphoedemaspecialist services.
Care coordination
Standard 6.1:Patients with a sarcoma have access to a 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:Patients with a sarcoma have access to sarcoma treatment units with appropriate resources and facilities to deliver the best standard of care.
Standard 7.2:There is a formal working relationship between the regional sarcoma treatment units and associated providers of systemic therapy and radiotherapy detailing pathways for specialist surgery, specialist pathology, adjuvant therapies, allied health and nursing care coordination.
Standard 7.3: Treatment for sarcoma is based on histological subtypes, and patients are offered a combination of surgery, systemic therapy and radiotherapy where indicated.
Standard 7.4:Patientswho have a primary bone sarcoma have access to surgery performed by an oncology fellowship-trained orthopaedic surgeon affiliated to a sarcoma MDT.
Standard 7.5:Patientswho have a soft tissue sarcoma have access to surgery performed by, or under the direct supervision of, a soft tissue sarcoma fellowship-trained consultant surgeon affiliated to a sarcoma MDT.
Standard 7.6:Patients with a suspected retroperitoneal sarcoma are treated by a soft tissue sarcoma specialist affiliated to a sarcoma MDT.
Standard 7.7: Patients are offered early access to palliative care services when there are complex symptom control issues, when a curative treatment cannot be offered or if curative treatment is declined.
Follow-up and surveillance
Standard 8.1:Patients are offered follow-up under the direction of the specialist sarcoma treatment unit responsible for their treatment.
Standard 8.2:Follow-up plans include clinical review by appropriate members of the MDT, working in conjunction with the patient, their family/whānau and their GP.
Clinical performance monitoring and research
Standard 9.1:Data relating to sarcoma 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:Data on clinical outcomes and patient satisfaction are regularly monitored and reported as part of a national audit.
Standard 9.3:All patients with a sarcoma are offered the opportunity to participate in research projects and clinical trials where these are available.
1Timely Access to Services
Standard 1.1 / Patients referred urgently with a high suspicion of a sarcoma receive their first cancer treatment within 62 days.Standard 1.2 / Patients referred urgently with a high suspicion of a sarcoma have their FSA within 14 days.
Standard 1.3 / Patients referred urgently with a high suspicion of sarcoma after a local FSA are reviewed by a sarcoma treatment unit within 14days.
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, family/whānau and GPs know how quickly patients can receive treatment. Long waiting times may affect local control and survival benefit for some patients with a sarcoma, 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 is a government health target. The FCT indicators (Standards 1.1, 1.2, and 1.4) adopt a timed patient pathway approach across surgical and non-surgical cancer treatment, and apply to inpatients, outpatients and daypatients.
Good practice points
1.1Imaging reports are received by the referrer within two working days of the examination being performed (expert opinion).
1.2Reports are distributed electronically (expert opinion).