Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional National Thyroid Cancer Tumour Standards Working Group 2013 Citation: National Thyroid Cancer Tumour Standards Working Group. 2013. Standards of Service Provision for Thyroid Cancer 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 978-0-478-41544 (online) HP 5747 This document is available through the Ministry of Health website: www.health.govt.nz or from the regional cancer network websites: www.northerncancernetwork.org.nz www.midland cancernetwork.org.nz www.centralcancernetwork.org.nz www.southerncancernetwork.org.nz Contents Introduction ............................................................................................................... 1 Background ..................................................................................................... 1 Objective ......................................................................................................... 1 How the thyroid cancer service standards were developed .............................. 2 Equity and Whānau Ora .................................................................................. 2 Summary of the clinical standards for the management of thyroid cancer services ........................................................................................................... 4 Standards of service provision pathway ........................................................... 4 Summary of standards..................................................................................... 5 1 Prevention and Early Identification................................................................... 8 Rationale ......................................................................................................8-9 Good practice points .....................................................................................8-9 2 Timely Access to Services ............................................................................. 10 Rationale ....................................................................................................... 10 Good practice points ...................................................................................... 11 3 Referral and Communication ......................................................................... 13 Rationale ....................................................................................................... 13 Good practice points ...................................................................................... 13 4 Investigation, Diagnosis and Staging ............................................................. 15 Rationale .................................................................................................. 15-20 Good practice points ................................................................................. 15-20 5 Multidisciplinary Care ..................................................................................... 21 Rationale ....................................................................................................... 21 Good practice points ...................................................................................... 21 6 Supportive Care............................................................................................. 24 Rationale ....................................................................................................... 24 Good practice points ...................................................................................... 24 7 Care Coordination ......................................................................................... 26 Rationale ....................................................................................................... 26 Good practice points ...................................................................................... 26 8 Treatment ...................................................................................................... 28 Rationale .................................................................................................. 28-34 Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional iii Good practice points ................................................................................ 28-34 9 Follow-up and Surveillance ........................................................................... 36 Rationale ....................................................................................................... 36 Good practice points ..................................................................................... 36 10 Clinical Performance Monitoring and Research ............................................. 38 Rationale .................................................................................................. 38-40 Good practice points ................................................................................ 38-40 Appendix 1: National Thyroid Cancer Tumour Standards Working Group Membership .................................................................................................. 41 Appendix 2: Glossary ............................................................................................. 42 Appendix 3: References ......................................................................................... 47 iv Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional Introduction Background Thyroid nodules are a common clinical problem; however, thyroid cancer is relatively uncommon. In 2009, 225 new cases were recorded in New Zealand, of which 22 were papillary microcarcinomas (<10 mm) (Ministry of Health 2012a). Documented incidence of thyroid cancer over time is rising; in part due to the increased use of neck ultrasonography, but also reflecting increased numbers of larger thyroid cancers, including cancers >4 cm (Chen et al 2009). Most patients have a very good outcome; overall, 10-year survival in New Zealand was recorded as 87.7 percent in 2004 (Ministry of Health 2010a), although 5–20 percent of patients develop recurrent disease. Solitary papillary microcarcinomas are mostly incidental; most have no adverse effect on survival. The Segi age-standardised death rate per 100,000 from thyroid cancer in New Zealand from 1996 to 2009 was 0.74 ± 0.67 for Māori and 0.33 ± 0.10 for the total population (Ministry of Health 2012a). By far the majority of thyroid cancers are well differentiated (papillary or follicular), and therefore amenable to treatment with radioactive iodine following surgery. Medullary, poorly differentiated and anaplastic cancers are rare; treatment for these cancers is predominantly surgical, although newer medical therapies for advanced medullary cancers are becoming available (ATA Guidelines Taskforce on Thyroid Nodules and Differentiated Thyroid Cancer et al 2009). Incidental small papillary cancers are not uncommon findings in patients having thyroidectomy for other indications. Very rare types of thyroid cancer such as lymphoma are not specifically covered by the standards presented in this document. Given the relatively low numbers of patients presenting with thyroid cancer, management strategies (such as extent and type of surgery, role and dose of radioactive iodine or external beam radiotherapy) are based mainly on expert opinion or retrospective cohort studies reported from overseas institutions, rather than prospective randomised controlled trials. In developing these standards, the National Thyroid Cancer Tumour Standards Working Group has used published guidelines (mainly American and British) or drawn on expert opinion, with regard to the unique geographical and other characteristics of the New Zealand health care system. 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. Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional 1 The standards will be the same for all ethnic groups. However, we expect that in implementing the standards district health boards (DHBs) may need to tailor their efforts to meet the specific needs of populations with comparatively poorer health outcomes, such as Māori and Pacific people. How the thyroid cancer service standards were developed These standards were developed by a skilled working group, representing key specialities and interests across the thyroid cancer pathway of care. The group was chaired by a lead clinician and had access to expert advisors in key content areas (see Appendix 1). Existing evidence-based standards, clinical guidelines and patient pathways were referred to when developing the thyroid cancer standards (see Appendix 4). Where no clear evidence was available, expert opinion was obtained through the National Thyroid Tumour Standards Working 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 made 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 The differential health status between Māori and non-Māori is an ongoing challenge for the health sector (Ministry of Health 2010c). Cancer is an important contributor to these health inequalities (Blakely et al 2011). Studies have shown that Māori are least likely to access primary oral health care compared to Pacific and European people (Ministry of Health 2009). Māori males are twice as likely and females three times as likely as non-Māori to have a smoking history (Ministry of Health 2010d). Health inequities or health disparities are avoidable, unnecessary and unjust differences in the health of groups of people. In New Zealand, ethnic identity is an important dimension of health disparities. Cancer is a significant health concern for Māori, and has a major and disproportionate impact on Māori communities. 2 Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional Inequities exist between Māori and non-Māori in exposure to risk and protective factors for cancer, in incidence and outcomes, and in access to cancer services. Barriers to health care are recognised as multidimensional, and include health system and health care factors (eg, institutional values, workforce composition, service configuration and location), as well as patient factors (eg, socioeconomic position, transportation and patient values). Addressing these factors requires a population health approach that takes account of all the influences on health and how they can be tackled to improve health outcomes. A Whānau Ora approach to health care recognises the interdependence of people; health and wellbeing are influenced and affected by the ‘collective’ as well as the individual. It is important to work with people in their social contexts, and not just with their physical symptoms. The outcome of the Whānau Ora approach in health will be improved health outcomes for family/whānau through quality services that are integrated (across social sectors and within health), responsive and patient/family/whānau-centred. These standards will address equity for Māori patients with thyroid cancer in the following ways. The standards focus on improving access to diagnosis and treatment for all patients, including Māori and Pacific. Māori access to cancer services will be monitored and evaluated. Ethnicity data will be collected on all access measures and the FCT indicators, and will be used to identify and address disparities. Good practice points include health literacy and cultural competency training for all health professionals involved in patient care. Information developed or provided to patients and their family will meet Ministry of Health guidelines (Ministry of Health 2012b). Māori participation will be invited in multidisciplinary teams (MDTs) and networks, to develop treatment plans and care coordination and ensure an effective service delivery model. The role of Māori patient advocates and navigators to enhance the patient journey will be investigated. Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional 3 Summary of the clinical standards for the management of thyroid cancer services Format of the standards Each cluster of standards has a title that summarises the step of the patient journey or the area on which the standards are focused. This is followed by the standard itself, which explains the level of performance to be achieved. The rationale section explains why the standard is considered to be important. Attached to the clusters of standards are good practice points. Good practice points are supported either by the international literature, the opinion of the National Thyroid Cancer Standard Working Group or the consensus of feedback from consultation with New Zealand clinicians involved in providing care to patients with thyroid cancer. Also attached to each cluster are the Ministry of Health’s requirements for monitoring the individual standards. Standards of service provision pathway The thyroid cancer tumour standards are reflected in the following pathway. 4 Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional Summary of standards The standards for the management of thyroid cancer have been divided into 10 clusters: prevention and early identification timely access to services referral and communication investigation, diagnosis and staging multidisciplinary care supportive care care coordination treatment follow-up and surveillance clinical performance monitoring and research. The standards are as follows. Prevention and early identification Standard 1.1: Risk factors and ‘red alert’ signs of thyroid cancer are clearly communicated to all health care practitioners. Standard 1.2: People at significantly increased risk of thyroid cancer are offered surveillance for thyroid cancer. Timely access to services Standard 2.1: Patients referred urgently with a high suspicion of thyroid cancer have their first specialist assessment (FSA) within 14 days. Standard 2.2: Patients with a confirmed diagnosis of thyroid cancer and requiring active treatment start their treatment within 62 days of secondary care receiving a referral. Standard 2.3: Patients with a confirmed diagnosis of thyroid cancer (including recurrence) receive their first treatment or other management within 31 days of the decision to treat. Referral and communication Standard 3.1: Patients with suspected thyroid cancer are referred to secondary and tertiary care following an agreed referral pathway. Standard 3.2: Patients and their general practitioners (GPs) are provided with verbal and written information about thyroid cancer, diagnostic procedures, treatment options (including effectiveness and risks), final treatment plan and support services. Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional 5 Standard 3.3: 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 4.1: Patients with a thyroid nodule suspicious of thyroid cancer undergo fine needle aspiration (FNA) and/or ultrasound; FNA of a palpable nodule is an appropriate first step. Standard 4.2: Imaging investigations follow standardised imaging pathways based on the Royal College of Radiologists’ Cancer Imaging Guidelines (RCR 2006). Standard 4.3: Thyroid FNA results for patients referred urgently with a high suspicion of cancer are reported back to the referrer within five working days. Standard 4.4: Thyroid FNA specimens are reported using the Bethesda System for Reporting Thyroid Cytopathology. Standard 4.5: The histology of excised thyroid cancer specimens is recorded in a synoptic format. Standard 4.6: Relevant histology and cytology specimens of thyroid cancers discussed at regional multidisciplinary meetings (MDMs) are reviewed by a pathologist with a subspecialty interest in thyroid cancer. Standard 4.7: Patients with thyroid cancer are staged according to the American Joint Committee on Cancer (AJCC)’s Tumour, node, metastases (TNM) staging classification. Multidisciplinary care Standard 5.1: Patients with the following are discussed at an MDM: differentiated thyroid cancer greater than a micro carcinoma (>1 cm in diameter) or any size cancer with adverse histology (eg, medullary, anaplastic) a preoperative diagnosis of thyroid cancer with suspicion of extrathyroidal invasion or lymphadenopathy recurrent thyroid cancer metastatic thyroid cancer. Supportive care Standard 6.1: Patients with thyroid cancer and their family/whānau have equitable and coordinated access to appropriate medical, allied health and supportive care services, in accordance with Guidance for Improving Supportive Care for Adults with Cancer in New Zealand (Ministry of Health 2010b). 6 Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional Care coordination Standard 7.1: Patients with thyroid cancer have access to a clinical nurse specialist or other health professional who is a member of the MDT to help coordinate all aspects of their care. Treatment Standard 8.1: Thyroid surgery is performed by a surgeon who has undertaken subspecialty training that includes thyroid surgery. Standard 8.2: Surgical morbidity and mortality are presented at regular audit meetings. Standard 8.3: Patients with differentiated thyroid cancer are considered for radioactive iodine after surgery following internationally published guidelines. Standard 8.4: External beam radiotherapy is considered for patients at high risk of local recurrence. Standard 8.5: Patients with advanced thyroid cancer have access to appropriate medical oncology specialist care for consideration of evolving chemotherapies. Standard 8.6: Patients are offered early access to palliative care services when there are complex symptom control issues, when curative treatment cannot be offered, or if curative treatment is declined. Follow-up and surveillance Standard 9.1: Follow-up plans include clinical review by appropriate members of the MDT, working in conjunction with the patient, their family/whānau and their GP. Clinical performance monitoring and research Standard 10.1: Data relating to thyroid cancer beyond the fields required by the Cancer Registry, including treatment data, are reported to existing and planned national repositories. Standard 10.2: Patients with thyroid cancer are offered the opportunity to participate in appropriate research projects and clinical trials where these are available. Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional 7 1 Prevention and Early Identification Standard 1.1 Risk factors and ‘red alert’ signs of thyroid cancer are clearly communicated to all health care practitioners. Rationale Tumour stage at diagnosis and patient age are recognised as the most important prognostic factors for patients with thyroid cancer. Early detection of some thyroid cancers reduces morbidity and improves survival. Challenges to early diagnosis include: patient delay in presentation, primary health practitioner delay prior to FNA or referral to an appropriate specialist and specialist delay in seeing the patient or arranging appropriate diagnostic procedures. The only recognised environmental cause of thyroid cancer is radiation of the thyroid in childhood. Other risk factors include a family history of thyroid cancer or familial syndromes (eg, familial adenomatous polyposis (FAP) and multiple endocrine neoplasia type 2 (MEN2)). Ensuring adequate training of health care professionals regarding risk factors and patient symptoms and signs that raise suspicion for thyroid cancer should allow earlier identification of thyroid cancer. Clinical features associated with malignancy such as voice changes, rapid nodule growth, lymphadenopathy and certain characteristics of the nodule are important to recognise. Although the majority of thyroid cancers are asymptomatic, the likelihood a nodule is malignant is seven-fold increased if it is very firm, is fixed to adjacent structures, is rapidly growing, is associated with enlarged lymph nodes, causes vocal cord paralysis or invades into neck structures. The risk of recurrence and mortality correlates with the size of the primary tumour, extent of disease spread and patient age; children and adults older than 45 experience poorer outcomes than adults younger than 45. Good practice points 1.1 Risk factors for thyroid cancer are recorded for patients who have suspicious thyroid nodules. 1.2 Clinical features associated with malignancy are recorded. Monitoring requirements MR1A 8 Record national public health campaigns for identified risk factors. Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional Standard 1.2 People at significantly increased risk of thyroid cancer are offered surveillance for thyroid cancer. Rationale The only proven environmental risk factor for thyroid cancer is exposure to irradiation in childhood. Studies following the Chernobyl nuclear disaster show a markedly increased incidence of thyroid cancer in children from the region; a lesser risk is associated with therapeutic head and neck irradiation for childhood malignancy. Familial syndromes associated with an increased risk of thyroid cancer include MEN2, FAP, Carney’s complex and Cowden’s disease. Good health outcomes depend on a range of factors, including access to information, timely intervention, good practitioner–patient relationships and communication. Good practice points 1.3 Screening the general population to detect thyroid cancer is not recommended. 1.4 Screening for thyroid cancer by clinical examination or thyroid ultrasound is considered for people exposed as children to irradiation from Chernobyl or who received head and neck irradiation in childhood. 1.5 Individuals with a known familial syndrome associated with thyroid cancer undergo surveillance. 1.6 Health literacy is acknowledged as a key component to clinical best practice and improved clinical outcomes for Māori at risk of or experiencing cancer. 1.7 Clinicians responsible for communicating with patients and their family/whānau complete health literacy training. 1.8 Information developed for or provided to patients and their family/whānau meets Ministry of Health guidelines (Ministry of Health 2012b). Monitoring requirements MR1B Record numbers of identified population at increased risk enrolled in surveillance programmes. Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional 9 2 Timely Access to Services Standard 2.1 Patients referred urgently with a high suspicion of thyroid cancer have their FSA within 14 days. Standard 2.2 Patients with a confirmed diagnosis of thyroid cancer and requiring active treatment start their treatment within 62 days of secondary care receiving a referral. Standard 2.3 Patients with a confirmed diagnosis of thyroid cancer (including recurrence) receive their first treatment or other management within 31 days of the decision to treat. Rationale Timely and equitable access to quality cancer management is important to support good health outcomes for New Zealanders and to reduce inequalities. Key components of successful cancer management include early recognition and reporting of symptoms, expertise in triaging patients requiring prompt referral and rapid access to investigations and treatment. There is evidence that higher survival rates for thyroid cancer are associated with detection and treatment of early-stage, less advanced disease. While many thyroid cancers are associated with a good prognosis, others behave aggressively. Therefore it is important that health professionals are aware of important symptoms that may indicate cancer, to ensure prompt and appropriate referral. Delay in diagnosis can worsen prognosis and cause significant morbidity. Patient anxiety may contribute to worse clinical outcomes. A suspicion of cancer or cancer diagnosis is very stressful for patients and family/whānau. Prompt access to appropriate care will lessen this anxiety. Timed patient pathways help ensure patients receive quality and equitable clinical care. Shorter waits for cancer treatments is a government health target. The FCT indicators (the standards in this cluster) adopt a timed patient pathway approach across surgical and non-surgical cancer treatment, and apply to inpatients, outpatients and day patients. 10 Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional Good practice points 2.1 General practitioners refer to secondary care services within five working days of receiving a diagnostic result (usually through FNA) indicating thyroid cancer. 2.2 Patients presenting with the following are urgently referred: unexplained voice changes associated with goitre a thyroid nodule in a child cervical lymphadenopathy rapidly enlarging painless thyroid mass. 2.3 Immediate (same-day) referral is considered in some cases (eg, for a patient presenting with stridor and a thyroid lump). 2.4 Referrals are made electronically, or over the telephone. 2.5 General practitioners or referring doctors are informed if a specialist downgrades an urgent case of suspected cancer to a lower priority. 2.6 Non-urgent assessment of thyroid nodules is considered for patients presenting with the following: a thyroid lump that is newly presenting, or increasing in size over months history of sudden onset of pain in a thyroid lump (likely to have bled into a cyst) thyroid nodules associated with abnormal thyroid function tests (these patients are referred to an endocrinologist) impalpable nodules with low risk for cancer. 2.7 In patients with thyroid cancers exhibiting indolent growth, treatment is initiated within 62 days of referral; however, treatment is commenced earlier than this where appropriate. 2.8 The referral pathway, including urgent referral criteria, is easily accessible to primary care and is available electronically. Development of a standardised referral system for thyroid cancer is considered. 2.9 Strategies such as improved education of health professionals, a clear pathway and appropriate access to community and hospital services are considered, in order to shorten waiting times for treatment. 2.10 Delays in reporting of FNA results are minimised where possible, to reduce patient distress and ensure that patients receive appropriate, timely treatment. Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional 11 2.11 To ensure tests confirming cancer are not overlooked, a clear pathway is in place for reporting of concerning results. 2.12 Fine needle aspiration results are reported electronically, and results confirming cancer are highlighted. Monitoring requirements 12 MR2A Track FCT indicators. MR2B Audit imaging waiting times and reporting times for radiology. MR2C Collect and analyse ethnicity data on all access targets and indicators. Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional 3 Referral and Communication Standard 3.1 Patients with suspected thyroid cancer are referred to secondary and tertiary care following an agreed referral pathway. Standard 3.2 Patients and their GPs are provided with verbal and written information about thyroid cancer, diagnostic procedures, treatment options (including effectiveness and risks), final treatment plan and support services. Standard 3.3 Communications between health care providers include the patient’s name, date of birth, NHI number and contact details, and are ideally electronic. Rationale Thyroid nodules are common; they are found in 5 percent of thyroid glands on palpation and 50 percent of older adults when examined by ultrasound, although only 5–10 percent of thyroid nodules are malignant. It is important that health care professionals have ready access to a simple, clear pathway to investigate thyroid nodules, including when referral to a specialist is indicated. Patients may wish to discuss their diagnosis and treatment with their GP. General practitioners need basic information to be transferred rapidly, in order to support their patients at a time of stress. The majority of thyroid cancer cases have a good long-term prognosis. Good practice points 3.1 General practitioners refer electronically, to facilitate triage. 3.2 General practitioners receive communications of a cancer diagnosis within seven days. 3.3 General practitioners receive MDMs’ treatment recommendations within seven days of the MDM. Once treatment is complete, GPs receive reports of treatment (including details such as operation notes and radioactive iodine administration) within 14 days. 3.4 Two-way communication occurs between primary and secondary care. 3.5 Patients are informed face-to-face of a diagnosis of confirmed thyroid cancer as soon as is practical, and are invited to bring a support person to the consultation. 3.6 Written information is provided at an appropriate reading age for patients and family/whānau, and is available in a number of languages. Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional 13 3.7 Cancer services develop and implement a did-not-attend (DNA) reduction and follow-up protocol that particularly focuses on reducing inequalities for Māori. 3.8 Staff responsible for engagement with patients and/or their families/whānau undertake and complete cultural competency training. 3.9 The reporting terminology used for thyroid cytology is the Bethesda System for Reporting Thyroid Cytopathology. Monitoring requirements 14 MR3A Provide evidence of clear and accessible referral pathways. MR3B Audit the percentage of thyroid cancer referrals received through the appropriate pathway and on the appropriate proforma. MR3C Record the percentage of diagnostic information provided within seven days. MR3D Audit information sent to multidisciplinary clinic patients at their first visit. Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional 4 Investigation, Diagnosis and Staging Standard 4.1 Patients with a thyroid nodule suspicious of thyroid cancer undergo FNA and/or ultrasound; FNA of a palpable nodule is an appropriate first step. Rationale There are many international guidelines for investigation of patients with thyroid nodules, although there is controversy about the most cost-effective approach to the diagnostic evaluation of a thyroid nodule. Whether ultrasound imaging should be performed prior to all thyroid FNAs is controversial; this procedure may lead to delay in diagnosis, if ultrasound is not readily available. However, ultrasound is more accurate than clinical examination in detecting the size and number of nodules, and is able to define which nodules have suspicious features, and therefore need FNA. Good practice points 4.1 The initial investigation of a thyroid nodule is for the purposes of measuring thyroid-stimulating hormone (TSH). Clinicians consider radionuclide imaging in patients with a low TSH. 4.2 For patients with a clearly palpable thyroid nodule, an appropriate first step is FNA or a thyroid ultrasound. 4.3 Ultrasound guidance of FNA is available for selected nodules (non-palpable, partly cystic, posteriorly located, previously inadequately sampled). Thyroid nodules <1 cm do not require FNA evaluation, unless an ultrasound detects factors associated with increased cancer risk. 4.4 Ultrasound assessment of the thyroid focuses on identifying nodules with suspicious features. Standardised ultrasound reporting criteria are followed indicating position, shape, size, margins, echogenicity and the vascular pattern of the nodule(s). Features that may increase the probability that a nodule is malignant include: microcalcifications, irregular margins, hypoechogenicity, prominent internal vascularity, absent halo, nodule ‘taller than wide’ and cervical lymph adenopathy. 4.5 For patients with multinodular goitres, clinicians consider FNA for selected nodules (eg, where suspicious features are detected through ultrasound, or in the case of non-palpable nodules with risk factors), rather than just larger or clinically dominant nodules. Monitoring requirements MR4A Audit appropriateness of nodule FNA versus final pathology. Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional 15 Standard 4.2 Imaging investigations follow standardised imaging pathways based on the Royal College of Radiologists’ Cancer Imaging Guidelines (RCR 2006). Rationale Diagnosticians (such as radiologists and endocrinologists) involved in thyroid imaging should be familiar with the full range of imaging modalities, including ultrasonography, computed tomography (CT), magnetic resonance imaging (MRI), nuclear scintigraphy (NS) and positron emission tomography (PET), and understand the relevant roles, benefits and limitations of each, in order to optimise assessment outcomes. MRI and CT have no role in the characterisation of thyroid nodules. Good practice points 4.6 Ultrasound or other imaging where appropriate is performed within 21 working days of referral. 4.7 At the time of reporting, all other relevant imaging results are available for reference. 4.8 Accurate staging of thyroid malignancy often requires a combination of imaging modalities, including ultrasound, cross-sectional imaging (CT/MRI) and radionuclide imaging. 4.9 Neck ultrasound and/or FNA or whole-body radioiodine scanning is considered in the presence of suspected recurrent thyroid cancer based on elevated thyroglobulin levels. 4.10 For patients with medullary thyroid cancer who have elevated or rising calcitonin levels, ultrasound and/or PET-CT scanning and FNA are considered. 4.11 Computed tomography scanning is considered as an adjunct to restaging patients with recurrent thyroid cancer and assessing potential metastatic disease. 4.12 Clinicians consider performing CT scans without iodinated contrast, because of the risk of subsequent impaired uptake of radioiodine. 4.13 Clinicians consider MRI for the purposes of assessing local invasion and local disease recurrence in selected cases. Monitoring requirements 16 MR4B Ensure that radiology departments demonstrate written evidence of standardised imaging protocols. MR4C Audit appropriateness of imaging processes. Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional Standard 4.3 Thyroid FNA results for patients referred urgently with a high suspicion of cancer are reported back to the referrer within five working days. Standard 4.4 Thyroid FNA specimens are reported using the Bethesda System for Reporting Thyroid Cytopathology. Rationale The use of standardised diagnostic terminology in cytopathology reports facilitates investigation and management of thyroid nodules in accordance with evidencebased clinical guidelines. Good practice points 4.14 Suspicious nodules are subjected to FNA without delay, to accurately assess preoperative cancer risk. 4.15 The preoperative thyroid cytology or core biopsy specimens of patients referred for thyroid surgery from an outside institution are reviewed by a pathologist affiliated with the centre at which the surgery will be performed. Monitoring requirements MR4D Audit cytology and histology diagnosis correlation using data from the proposed national database for thyroid cancer. MR4E Audit timeframes for FNA reports. Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional 17 Standard 4.5 The histology of excised thyroid cancer specimens is recorded in a synoptic format. Rationale Treatment decisions require a minimum data set of diagnostic and prognostic features relevant to the tumour being treated. Synoptic reporting facilitates concise and complete recording of this information. Minimum data sets should include: cancer type maximum diameter differentiation/grade margins capsular invasion vascular invasion extrathyroidal invasion nodal information (count, level, extracapsular spread) TNM staging. Good practice points 4.16 Pathology reporting of thyroid cancer resection specimens follows an agreed proforma chosen by or developed in consultation with an endocrine or head and neck cancer MDT. The Thyroid Cancer Histopathology Reporting Proforma of the Royal College of Pathologists of Australasia is an example (RCPA 2011). 4.17 Resected specimens containing thyroid cancer likely to require further surgery, adjuvant radioiodine treatment or external beam radiotherapy are reviewed by a pathologist with experience in thyroid cytology who is a member of an endocrine or head and neck cancer MDT. Monitoring requirements MR4F 18 Audit pathology departments’ registers of synoptic reports. Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional Standard 4.6 Relevant histology and cytology specimens of thyroid cancers discussed at regional MDMs are reviewed by a pathologist with a subspecialty interest in thyroid cancer. Rationale Thyroid cancer can present diagnostic discrepancies because of the diverse range of cancers that present in this region, many of which are relatively uncommon or have prognostically important, variant subtypes. Good practice points 4.18 Where there is major discordance between a reporting and a reviewing pathologist, the difference in opinion is discussed. If the disagreement cannot be resolved, an independent national or international expert opinion is sought before treatment is commenced. Monitoring requirements MR4G Audit MDMs’ records of pathology reviews. Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional 19 Standard 4.7 Patients with thyroid cancer are staged according to the AJCC’s TNM staging classification. Rationale Staging at diagnosis predicts survival rates and guides appropriate management of patients with thyroid cancer. Good practice points 4.19 All patients undergo clinical review and staging at an MDM. 4.20 Staging is based on a combination of clinical findings, imaging findings and pathology results. Monitoring requirements MR4H 20 Audit MDMs’ records of patient staging. Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional 5 Multidisciplinary Care Standard 5.1 Patients with the following are discussed at an MDM: differentiated thyroid cancer greater than a micro carcinoma (>1 cm in diameter) or any size cancer with adverse histology (eg, medullary, anaplastic) a preoperative diagnosis of thyroid cancer with suspicion of extrathyroidal invasion or lymphadenopathy recurrent thyroid cancer metastatic thyroid cancer. 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. Evidence from large randomised controlled trials to support particular methods of patient management for thyroid cancer is lacking, partly because of the relative rarity of thyroid cancers. However, there is clear support for a team approach. Patients with recurrent/metastatic thyroid cancer can be complex to manage, and may require input from a variety of health professionals. Good practice points 5.1 Most patients with thyroid cancer are discussed at an MDM. 5.2 One clearly identified lead clinician is responsible for coordinating patient care. 5.3 The core membership of a thyroid MDM includes: an endocrinologist a thyroid surgeon a radiologist Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional 21 5.4 specialist pathologists (histopathology and cytopathology) a clinical nurse specialist or team care coordinator/data clerk at least one team member trained and licensed to give radioactive iodine (a nuclear medicine physician, a radiation oncologist or a radiologist). The MDT has contact with and appropriate access to the following support services: FNA cytology flexible laryngoscopy radiation oncology medical oncology clinical genetics clinical biochemistry adolescent and young adult services psychology/social work. 5.5 Smaller provincial MDTs or treating clinicians from smaller centres aim to present patients to their regional MDT in person, via teleconferencing or via email discussion (ie, to attend a ‘virtual MDM’). 5.6 Meeting frequency is dictated by patient numbers. 5.7 The multidisciplinary discussion report includes treatment recommendations and intent where possible, as well as reasons for any variation from standard practice. 5.8 Treating clinicians record reasons for not following treatment plans recommended by the MDM. 5.9 Patients and their GPs are informed of the MDM’s recommendations within seven days of the meeting. 5.10 Recommendations of the MDM are available as an electronic record, and accessible to other members of the health care team. 5.11 The MDT records information in a database that can be collated and analysed locally, regionally and nationally. 5.12 An electronic MDM reporting system is developed and available online, for uniform recording of information at a national level. 5.13 In order to meet Māori needs and reduce inequalities, cancer care services are focused on Māori priorities. This may involve the reorientation of existing services or the development of new services or initiatives. Some specific areas of good practice include: 22 Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional involving Māori expertise and the range of relevant Māori services and providers in MDTs and networks prioritising Māori in the piloting of developments or initiatives in service delivery developing tools (such as Whānau Ora assessments) to meet the needs of Māori, which can be used to inform patient treatment plans and care coordination involving Māori patients and their family/whānau in MDMs to discuss treatment options and plans offering all Māori patients and their family/whānau access to Whānau Ora assessments and cultural support services. Monitoring requirements MR5A Audit MDM documentation, including records of meeting dates and times (actual or virtual), patients discussed and names of involved MDT members. Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional 23 6 Supportive Care Standard 6.1 Patients with thyroid cancer and their family/whānau have equitable and coordinated access to appropriate medical, allied health and supportive care services, in accordance with Guidance for Improving Supportive Care for Adults with Cancer in New Zealand (Ministry of Health 2010b). Rationale The psychological, social, physical and spiritual needs of cancer patients are many and varied. These needs can to a large extent be met by allied health care teams in hospitals and in the community. Adults with cancer enjoy improved quality of life following needs assessment and provision of supportive care. Non-government organisations, including the Cancer Society, perform an important role in providing supportive care. Good practice points 24 6.1 Patients undergo regular assessment of their supportive care and psychosocial needs. 6.2 A structured referral pathway is in place based on sources and degrees of distress, so that patients can quickly be referred to appropriate services. 6.3 All patients have access to a social worker. 6.4 A clearly recorded discussion of preferred priorities of care (advance care directives and planning) takes place when it becomes clear that cure is not possible. Wherever possible, this is not left until the terminal stages of the illness. 6.5 All nursing staff working with thyroid cancer patients receive clinical training in monitoring thyroid cancer patients before and after surgery and, where relevant, the appropriate and safe care of patients receiving radioiodine therapy. 6.6 Nurses working in outpatient clinics have skills relating to the ongoing care of thyroid cancer patients, including those who have had radiation therapy or radioiodine treatment. 6.7 Patients who travel long distances to regional treatment services have access to information on the Ministry of Health’s National Travel Assistance Scheme (Ministry of Health 2006). Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional Monitoring requirements MR6A Provide evidence of culturally appropriate patient and family/whānau satisfaction surveys, and audit complaints processes. MR6B Collect and analyse ethnicity data on all treatment, timeliness and access targets and indicators. Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional 25 7 Care Coordination Standard 7.1 Patients with thyroid cancer have access to a clinical nurse specialist or other health professional who is a member of the MDT to help coordinate all aspects of their care. Rationale The management of cancer is complex, and it is not uncommon for a patient to be seen by a number of specialists within and across multiple DHBs and across the public and private sectors. A patient’s quality of life is improved when a dedicated cancer care coordinator facilitates their access to services. ‘Care coordination’ refers to a system or a role primarily intended to expedite patient access to services and resources, improve communication and the transfer of information between services, address patients’ information needs and improve continuity of care throughout the cancer continuum. Patients and caregivers should be able to access care coordination through a single point of contact through the various stages of the thyroid cancer journey. Good practice points 26 7.1 Regional cancer centres employ a dedicated thyroid cancer contact person to support patients’ access to psychosocial support and information and coordinate their cancer journeys. 7.2 Patients are provided with their care coordinator’s name and contact details, and the initial contact between patient and care coordinator is made within seven days of the initial diagnosis becoming known to the patient. 7.3 Patients are kept informed, in a manner appropriate to their individual needs, about the processes involved in the diagnosis, treatment and management of their cancer. 7.4 Cancer-related information is free and easily accessible to the patient, their family/whānau and the public. Such information meets the needs of diverse audiences, is written in everyday language, is accurate and unbiased, and is based on the best available evidence. 7.5 Māori patients and their family/whānau are offered access to Whānau Ora assessments and cultural support services. 7.6 Patients with English as a second language have access to an interpreter. Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional Monitoring requirements MR7A Ensure that MDMs record identified care coordinators. MR7B Provide evidence of culturally appropriate patient and family/whānau satisfaction surveys, and audit complaints processes. MR7C Collect and analyse ethnicity data on all treatment, timeliness and access targets and indicators. Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional 27 8 Treatment Standard 8.1 Thyroid surgery is performed by a surgeon who has undertaken subspecialty training that includes thyroid surgery. Rationale Thyroid surgery is a highly specialised field; the best patient outcomes in terms of morbidity and low recurrence rates are achieved by surgeons who have undergone extra training and who regularly perform procedures. Good practice points 8.1 Individual surgical departments identify the surgeons who will undertake thyroid surgery, and audit their results. 8.2 In centres where case volumes are low, surgeons are encouraged to visit major centres, to maintain the required skill set. 8.3 Referral to a surgeon with a high case load is encouraged in complex cases, such as the presence of involved central and regional nodes, extrathyroidal extension and recurrent laryngeal nerve involvement. 8.4 Surgeons consult with all patients undergoing surgery for cancer and their family/whānau about final disposal of tissue or body parts surgically removed. 8.5 Patients, particularly Māori and Pacific patients, are given the option of retaining tissue postoperatively. Monitoring requirements MR8A 28 Surgical departments provide documentation on surgeons who are credentialed for thyroid surgery. Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional Standard 8.2 Surgical morbidity and mortality are presented at regular audit meetings. Rationale As mortality for thyroid cancer is low and stable, and the incidence of thyroid cancer is increasing, the emphasis is currently on reducing treatment morbidity. Regular audit improves performance. Identification of a higher than expected morbidity rate affords the opportunity for retraining, or redistribution of the thyroid surgery workload. Good practice points 8.6 Thyroid function and a baseline serum calcium are measured prior to thyroidectomy. 8.7 Evaluation of vocal cord mobility is undertaken before and after thyroid surgery. 8.8 For patients with medullary thyroid cancer, phaeochromocytoma is excluded, plasma calcitonin is measured and RET proto-oncogene mutation screening is considered prior to surgery. Monitoring requirements MR8B Audit records of morbidity and mortality meetings. Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional 29 Standard 8.3 Patients with differentiated thyroid cancer are considered for radioactive iodine after surgery following internationally published guidelines. Rationale Radioactive iodine has been shown to reduce recurrence rates for patients with differentiated thyroid cancer, although low-risk patients may not benefit. Good practice points 8.9 Patients with differentiated thyroid cancer are seen by a specialist with experience in the use of I131 who is familiar with published international guidelines on I131 administration. 8.10 I131 is only given by an appropriately licensed medical practitioner. 8.11 Clear written radiation precautions are in place for administration of I131 to inpatients; this is supervised by an appropriately trained and licensed practitioner, in conjunction with a physicist. 8.12 Patients receiving I131 give appropriate informed written consent prior to the dose being administered. The consent process includes the provision of written information about the treatment and side-effects, as well as the immediate post-I131 radiation precautions to be taken. 8.13 For female patients of childbearing age, pregnancy is excluded prior to I 131 administration. 8.14 Breastfeeding patients stop breastfeeding four to eight weeks before therapy, and do not resume after therapy. Patients are advised to avoid pregnancy for six months after I131 administration. 8.15 The timing of I131 administration is carefully planned with each patient. For some patients it can be given as early as three weeks post-operatively; for others it may be delayed for many months. 8.16 Clinicians follow international guidelines in determining the timing of withdrawal of thyroxine (or administration of recombinant TSH) before I131 is given, the dose of I131 used, the need for and timing of blood tests for TSH, thyroglobulin and thyroid antibodies (and urine iodine), the indication for and type of pre- and post-I131 scans, and the timing of post-dose thyroxine recommencement. 8.17 The need for complex scheduling for patients is acknowledged, and clear internal arrangements are in place to ensure that patients progress through the I131 schedule correctly. 8.18 A clear plan for specialist follow-up for patients receiving I131 is developed in accordance with international guidelines. 30 Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional Monitoring requirements MR8C Audit records of the provision of written I131 precautions advice to patients before treatment. Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional 31 Standard 8.4 External beam radiotherapy is considered for patients at high risk of local recurrence. Rationale The aim of external beam radiotherapy is to improve local control of the cancer. Good practice points 8.19 Adjuvant radiotherapy is considered where there is gross residual tumour, where visible extra-thyroid extension is seen at surgery or where there is a high likelihood of microscopic residual disease. 8.20 Radiotherapy is considered as part of the primary treatment for unresectable tumours, with or without adjuvant radioiodine treatment. 8.21 If intensity modulated radiotherapy is used, every radiotherapy plan is subjected to robust quality assurance plan verification. 8.22 Treating oncologists aspire to treat patients with the best available techniques, taking into account potential impacts on departmental treatment resources. 8.23 Periodic (preferably daily) verification of patient positioning and treatment volumes is undertaken, to detect and correct for any change in patient position and tumour size/position. Monitoring requirements MR8D 32 Audit records of radiotherapy departments’ written treatment protocols. Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional Standard 8.5 Patients with advanced thyroid cancer have access to appropriate medical oncology specialist care for consideration of evolving chemotherapies. Rationale New systemic medical therapies (such as tyrosine kinase inhibitors) that molecularly target thyroid cancer that no longer responds to radioactive iodine are under development. To ensure optimal outcomes for patients, providers need to facilitate access to such treatments as their worth is proven and they become generally available. Good practice points 8.24 Patients with advanced metastatic thyroid cancer are referred to appropriate medical oncologists for consideration of their eligibility for new therapies. Monitoring requirements MR8E Record the number of patients referred for tyrosine kinase inhibitor therapy and other evolving chemotherapies. Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional 33 Standard 8.6 Patients are offered access to palliative care services when there are complex symptom control issues, when curative treatment cannot be offered, or if curative treatment is declined. Rationale A diagnosis of cancer and its subsequent treatment can have a devastating impact on the quality of a person’s life, as well as on the lives of families/whānau and other carers. Patients may face new fears and uncertainties, and may have to undergo unpleasant and debilitating treatments. Patients should expect to be offered optimal symptom control and psychological, cultural, social and spiritual support. They may want to be assured that their families/whānau and carers will receive support during illness and, if they die, following bereavement. Palliative care is the care of people who are dying from active, progressive diseases or other conditions that are not responsive to curative treatment. Palliative care embraces the physical, social, emotional and spiritual elements of wellbeing – tinana, whānau, hinengaro and wairua – and enhances a person’s quality of life while they are dying. Palliative care also supports the bereaved family/whānau (Ministry of Health 2001). The objective of palliative care is to alleviate suffering and provide compassionate care for the patient and their family/whānau. Competence in palliative medicine and sensitivity to people’s beliefs and values are two key prerequisites for a provider of palliative care. Clinicians should form a care plan for palliative patients with a view to ensuring that pain and other potentially distressing symptoms are relieved, dignity is preserved and there is engagement with family/whānau (Ministry of Health 2001). Good practice points 8.25 Screening for palliative care needs, comprehensive assessment and care planning are undertaken at appropriate intervals to meet the needs and wishes of the patient and their family/whānau. 8.26 Access to palliative care, decision-making and care planning are based on a respect for the uniqueness of the patient and their family/whānau, independent of their current health status, diagnosis, age, gender, cultural background or geography. 8.27 Provider organisations ensure that patients and their family/whānau have easy access to a range of free, culturally and educationally appropriate, high-quality information materials about cancer and palliative care services in a variety of formats. 8.28 Patients and their families/whānau are offered palliative care options and information in plain language that is targeted to their particular needs; this is incorporated into care plans. 34 Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional 8.29 Practitioners recognise dying patients in a timely manner, and discuss advance care planning and end-of-life goals of care with patients and their family/whānau, using end-of-life care pathways. Monitoring requirements MR8F Audit proposed plans of care, onward referrals and follow-up responsibilities recorded at MDM reviews and in patients’ notes. Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional 35 9 Follow-up and Surveillance Standard 9.1 Follow-up plans include clinical review by appropriate members of the MDT, working in conjunction with the patient, their family/whānau and their GP. Rationale While the majority of differentiated thyroid cancer (DTC) recurrences occur within five years, late recurrences up to 20 years after initial treatment are encountered. The majority of DTC patients (~80%) may be classified as low risk after the initial treatment phase (this classification applies to patients for whom disease has been excised, for whom radioiodine ablation has been completed, and who have received a negative result for thyroglobulin and/or a clear post-radioactive iodine whole body scan at 6–12 months after treatment). Low-risk patients have an expected survival close to that of age-matched control groups. Those with persistent disease have a lower but variable survival rate, dependent on tumour and clinical features. Follow-up will usually include a combination of clinical evaluation, thyroglobulin monitoring, ultrasound and I131 whole-body scanning. Patients should also receive appropriate TSH suppression. Good practice points 36 9.1 Follow-up plans are formulated according to a national follow-up programme, and follow nationally agreed guidelines (under development). 9.2 Long-term plans are developed for patients with DTC following international guidelines, and are supervised by an appropriate member of the MDT (surgeon, endocrinologist or oncologist). 9.3 Special subgroups of patients with thyroid cancer (eg, those with medullary thyroid cancer or lymphoma) will require a different follow-up pathway. 9.4 Patients with persistent post-operative voice change are referred to an appropriate ear nose and throat specialist. 9.5 Post-operative hypoparathyroidism is appropriately managed to determine if it is permanent. Care is taken to avoid complications of long-term treatment. 9.6 Thyroid stimulating hormone suppression is managed according to the risk status of the patient, and is reviewed over time. 9.7 Thyroglobulin (Tg) measurements are taken while a patient is on TSH suppression every 6–12 months, and in combination with measurement of Tg antibodies (since the presence of these antibodies can give a false Tg result). Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional 9.8 Rising Tg levels over time suggest cancer recurrence; in such cases, a neck ultrasound and a radioactive iodine whole-body scan are considered. 9.9 Local recurrence is surgically excised if possible. 9.10 Distant metastases are managed by an MDT; treatment modalities including radioactive iodine, radiotherapy, surgery, systemic therapy and biologic agents are considered. 9.11 Discharge to primary care for low-risk disease-free patients is considered after five years, along with a plan for ongoing monitoring of Tg and neck evaluation. 9.12 Clinicians consider offering extra support or counselling to patients with thyroid cancer in their childbearing years. 9.13 Patients treated for medullary thyroid cancer receive intermittent monitoring of plasma calcitonin and carcinoembryonic antigen levels. There is no role for TSH suppression in these cases. 9.14 Cancer services develop and implement DNA reduction strategies that particularly focus on reducing inequalities for Māori. Monitoring requirements MR9A Audit follow-up protocols, including with regards to patient, family/whānau and GP access. Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional 37 10 Clinical Performance Monitoring and Research Standard 10.1 Data relating to thyroid cancer beyond the fields required by the Cancer Registry, including treatment data, are reported to existing and planned national repositories. Rationale The aim of this standard is to construct a database for thyroid cancer to integrate demographic, diagnostic, treatment, outcome, genetic and other relevant information to contribute to service and clinical performance monitoring and research to improve patient outcomes. Data of newly diagnosed thyroid cancer cases and deaths due to thyroid cancer are currently collected by the New Zealand Cancer Registry. However, mandatory data collection is currently limited to demographics, histopathology, and histopathological staging. Hospital discharge data is collected by the National Minimum Dataset, and mortality data are obtained through death certificates. Thyroid cancer data beyond the fields required by the Cancer Registry, including treatment data, should be reported to existing or planned future national repositories rather than to stand-alone regional or national thyroid cancer-specific databases. The National Thyroid Tumour Standards Working Group is developing a data set for information required for MDT discussion, and a second minimal data set that can be used for service and clinical monitoring. This will allow future local, regional and national collation and analysis of thyroid cancer data, and provide useful and accurate statistical data on the incidence and outcomes of patients with thyroid cancer in New Zealand. Prospective data collection will encourage clinicians involved with thyroid cancer to remain actively engaged with data collection, and encourage audit of individual, institutional and regional outcomes compared to national data. This will allow early identification and intervention for any apparent substandard outcomes for patients treated for thyroid cancer. Good practice points 10.1 Patients are informed that their information is being recorded to help the MDT propose a treatment plan and to monitor and evaluate access to services. 10.2 Data are collected in accordance with the National Cancer Core Data Definitions Interim Standards (IT Health Board 2011). 10.3 Clinical information on patients with thyroid cancer is collected systematically using a generic thyroid cancer MDM proforma, to integrate relevant clinical information with the currently collected Cancer Registry data. 38 Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional 10.4 Clinicians have ready access to other specialties’ ‘stand-alone’ records, to allow better and more efficient patient management. 10.5 Collected information is integrated with the Cancer Registry database. 10.6 Individual MDTs are responsible for collecting and forwarding information relating to patients with thyroid cancer. 10.7 Regional thyroid cancer centres employ a data manager. 10.8 Collect local data in addition to the minimum data set, as for the national thyroid cancer database. 10.9 Share regional data of interest at forums such as national, Australasian and international clinical meetings. Monitoring requirements MR10A Audit the completeness and accuracy of data supplied to the Cancer Registry. Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional 39 Standard 10.2 Patients with thyroid cancer are offered the opportunity to participate in appropriate research projects and clinical trials where these are available. Rationale The outcomes of research are diverse, and can include survival benefits for patients through more effective early diagnosis and management and improved coordination of post-intervention services to reduce or manage morbidity. The availability of data is currently poor due to the lack of robust audit procedures and low rate of recruitment into clinical trials. One of the key findings of Access to Cancer Services for Māori (Ministry of Health 2005) was the lack of information on cancer services specifically produced for Māori, including discussion of interventions. Several areas arise as priorities for further research. Good practice points 10.10 All referrals to an MDM are entered into a national database, to maximise the chance of use of information for clinical research. Analysis of this data set is undertaken annually. 10.11 Collected data include details of intervention and post-intervention treatment and management. 10.12 Employing organisations value and facilitate the participation of clinicians in research and audit, and demonstrate this by allocating time, administrative support and access to research teams. 10.13 Research with Māori cancer patients, their family/whānau and their communities is prioritised. 10.14 The role of Māori patient advocates or navigators and other interventions is investigated, to enhance the patient journey for Māori patients and their family/whānau. 10.15 Māori perspectives of barriers and facilitators to access of cancer services are explored, along with preferences and priorities for interventions to address access issues. 10.16 The role of differential access to timely and appropriate cancer services in inequalities in cancer outcome between Māori and non-Māori is considered. Monitoring requirements MR10B 40 Provide records of the number and proportion of patients offered entry into research projects each year, and of those patients who are actually recruited. Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional Appendix 1: National Thyroid Cancer Tumour Standards Working Group Membership Chair Associate Prof Geoff Braatvedt, Endocrinologist, University of Auckland/Auckland DHB Members Mr Richard Harman (deputy chair), Consultant Surgical Oncologist, Waitemata DHB Mr Robert Allison, Consultant Otolaryngologist/Head and Neck Surgeon, Canterbury DHB Dr Mark Bolland, Consultant Endocrinologist, Counties Manukau DHB/University of Auckland Dr Penny Hunt, Consultant Endocrinologist, Canterbury DHB/University of Otago Mr Nick McIvor, Head and Neck Surgeon, Auckland DHB Mr Win Meyer-Rochow, Consultant Endocrine Surgeon, Waikato DHB Dr Nichola Naidoo, Consultant Radiation Oncologist, Capital & Coast DHB Dr Hament Pandya, Consultant Radiologist, Waitemata DHB Dr Lisa Sweetman, Consultant Radiologist, Capital & Coast DHB Dr Simon Young, Consultant Endocrinologist, Waitemata DHB Ex officio members Emma Maddren, Project Manager, Northern Cancer Network Deirdre Maxwell, Network Manager, Northern Cancer Network Dr Richard Sullivan, Network Clinical Director, Northern Cancer Network Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional 41 Appendix 2: Glossary 42 Adjuvant therapy Additional treatment to increase the effectiveness of the main treatment (often surgery), such as chemotherapy, systemic therapy or radiotherapy Advance care planning A process of discussion and shared planning for future health care Allied health professional One of the following groups of health care workers: physiotherapists, occupational therapists, dietitians, paramedics, prosthetists/orthotists, speech-language therapists, psychologists and social workers Asymptomatic Without obvious signs or symptoms of disease. In early stages, cancer may develop and grow without producing symptoms Best practice A method or approach that is accepted by consensus to be the most effective way of doing something, in the circumstances; may or may not be based on evidence Biopsy Removal of a sample of tissue or cells from the body to assist in the diagnosis of a disease Cancer journey The individual and personal experience of a person with cancer throughout the course of their illness Cancer Networks Cancer Networks were formed in response to national policy to drive change and improve cancer services for the population in specific areas. There are four regional networks: Northern, Midland, Central and Southern Cancer service pathway The cumulative cancer-specific services that a person with cancer uses during the course of their experience with cancer Carcinoma Cancer of the lining tissue that covers all the body organs. Most cancers are carcinomas Care coordination Entails the organising and planning of cancer care, who patients and family/whānau see, when they see them and how this can be made as easy as possible. It may also include identifying who patients and family/whānau need to help them on the cancer pathway Chemotherapy The use of drugs that kill cancer cells, or prevent or slow their growth (also see systemic therapy) Clinical trial An experiment for a new treatment Computed tomography (CT) A medical imaging technique using X-rays to create crosssectional slices through the body part being examined Confirmed diagnosis (used in FCT indicators) The preferred basis of a confirmed cancer diagnosis is pathological, noting that for a small number of patients cancer diagnosis will be based on diagnostic imaging findings Curative Aiming to cure a disease Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional Cutaneous Skin Decision to treat (used in FCT indicators) A decision to begin a patient’s treatment plan or other management plan, following discussion between the patient and treating clinician DHB District Health Board Excision The removal of tissue by surgery Family/whānau Can include extended family/whānau, partners, friends, advocates, guardians and other representatives Faster cancer treatment (FCT) A Ministry of Health programme that will improve services by standardising care pathways and timeliness of services for cancer patients throughout New Zealand Faster Cancer Treatment indicators Measures of cancer care collected through DHB reporting of timeframes within which patients with a high suspicion of cancer access services. The indicators are internationally established and provide goals for DHBs to achieve over time Fine needle aspiration cytology (FNA) The use of a fine needle to biopsy a tumour or lymph node to obtain cells for cytological confirmation of diagnosis First specialist assessment (FSA) Face-to-face client contact (including telemedicine) between a patient and a registered medical practitioner or nurse practitioner for the purposes of first assessment for their condition for that specialty First treatment (used in FCT indicators) The treatment or other management that attempts to begin the patient’s treatment, including palliative care GP General practitioner Health equality/equity Absence of unnecessary, avoidable and unjust differences in health (Ministry of Health 2002) Health inequality/inequity Differences in health that are unnecessary, avoidable or unjust (Ministry of Health 2002) High suspicion of cancer (used in FCT indictors) Where a patient presents with clinical features typical of cancer, or has less typical signs and symptoms but the clinician suspects that there is a high probability of cancer Histological Relating to the study of cells and tissue on the microscopic level Intensity modulated radiation therapy The attempt to optimise dose distribution during external beam radiotherapy delivery. Each radiation field is divided into small segments with varying radiation intensity, defining target shape, location and the geometry of overlaying tissues. Intensity modulated radiation therapy fields are typically designed using computer-driven (or -aided) optimisation. This is often referred to as ‘inverse treatment planning’ Local recurrence Local persistence of a primary tumour due to incomplete excision Lymphadenopathy Disease or swelling of the lymph nodes Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional 43 44 Magnetic resonance imaging (MRI) A non-invasive method of imaging, which allows the form and metabolism of tissues and organs to be visualised (also known as nuclear magnetic resonance) Margin The edge or border of tissue removed in cancer surgery Medical oncologist A doctor who treats cancer patients through the use of chemotherapy and, for some tumours, immunotherapy Medical oncology The specialist treatment of cancer patients through the use of chemotherapy and, for some tumours, immunotherapy Metastases Cancerous tumours in any part of the body that have spread from the original (primary) origin. Also known as ‘secondaries’ Metastatic disease A disease that has spread from the organ or tissue of origin to another part of the body Morbidity The state of being diseased Mortality Either (a) the condition of being subject to death or (b) the death rate, which reflects the number of deaths per unit of population in any specific region, age group, disease or other classification, usually expressed as deaths per 1000, 10,000 or 100,000 Multidisciplinary meeting (MDM) A deliberate, regular, face-to-face meeting (which may be through videoconference) to facilitate prospective multidisciplinary discussion of options for patients’ treatment and care by a range of health professionals who are experts in different specialties. ‘Prospective’ treatment and care planning makes recommendations in real time, with an initial focus on the patient’s primary treatment. Multidisciplinary meetings entail a holistic approach to the treatment and care of patients Multidisciplinary team (MDT) A group of specialists in a given disease area. The MDT meets regularly to plan aspects of patient treatment. Individual patient cases might be discussed at an MDM, to best plan approach to treatments National Health Index (NHI) number A unique identifier for New Zealand health care users Oncology The study of the biological, physical and chemical features of cancers, and of the causes and treatment of cancers Palliative Anything that serves to alleviate symptoms due to an underlying cancer but is not expected to cure it Palliative care Active, holistic care of patients with advanced, progressive illness that may no longer be curable. The aim is to achieve the best quality of life for patients and their families/whānau. Many aspects of palliative care are also applicable in earlier stages of the cancer journey in association with other treatments Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional Pathologist A doctor who examines cells and identifies them. The pathologist can tell where a cell comes from in the body and whether it is normal or a cancer cell. If it is a cancer cell, the pathologist can often tell what type of body cell the cancer developed from. In a hospital practically all the diagnostic tests performed with material removed from the body are evaluated or performed by a pathologist Pathology A branch of medicine concerned with disease; especially its structure and its functional effects on the body Patient pathway The individual and personal experience of a person with cancer throughout the course of their illness; the patient journey Positron emission tomography (PET) A highly specialised imaging technique using a radioactive tracer to produce a computerised image of body tissues to find any abnormalities. PET scans are sometimes used to help diagnose cancer and investigate a tumour’s response to treatment Positron emission tomography and computed tomography (PET-CT) An advanced imaging technique combining an injected material (18 Fluorine) which is taken up by cancer cells and a CT scan Primary care Primary-level health services provided by a range of health workers, including GPs and nurses Prognosis A prediction of the likely outcome or course of disease; the chance of recovery or recurrence Quality assurance All the planned and systematic activities implemented within the quality system, and demonstrated as needed Radiologist A doctor who specialises in creating and interpreting pictures of areas inside the body using X-rays and other specialised imaging techniques. An interventional radiologist specialises in the use of imaging techniques for treatment; for example catheter insertion for abscess drainage Radiology The use of radiation (such as X-rays, ultrasound and magnetic resonance) to create images of the body for diagnosis Radiotherapy (radiation treatment) The use of ionising radiation, usually X-rays or gamma rays, to kill cancer cells and treat tumours Randomised controlled trial A study in which people are allocated by chance alone to receive one of several interventions, one of which is the standard of comparison Recurrence The return, reappearance or metastasis of cancer (of the same histology) after a disease free period Referred urgently (used in FCT indicators) Describes urgent referral of a patient to a specialist because he or she presents with clinical features indicating high suspicion of cancer Resection Removal of tissue from the body by surgery Stage The extent of a cancer; especially whether the disease has spread from the original site to other parts of the body Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional 45 46 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 their disease Synoptic report A standardised proforma for reporting of cancer Systemic therapy Treatment using substances that travel through the bloodstream, reaching and affecting cells all over the body Tertiary Third level. Relating to medical treatment provided at a specialist institution Tumour, node, metastasis (TNM) A staging system that describes the extent of cancer, developed by the American Joint Committee on Cancer Ultrasound A non-invasive technique using ultrasound waves (high-frequency vibrations beyond the range of audible sound) to form an image Unresectable Unable to be removed by surgery 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 Thyroid Cancer Patients in New Zealand Provisional Appendix 3: References Development of the thyroid cancer standards was informed by key national and international documents. Those documents that most directly influenced the development of the standards are listed below: ATA Guidelines Taskforce on Thyroid Nodules and Differentiated Thyroid Cancer, Cooper DS, Doherty GM, et al. 2009. Revised American Thyroid Association management guidelines for patients with thyroid nodules and differentiated thyroid cancer. Thyroid 19(11): 1167–214. British Thyroid Association, Royal College of Physicians. 2007. Guidelines for the Management of Thyroid Cancer (2nd edition). London: British Thyroid Association, Royal College of Physicians. Ministry of Health. 2011. Targeting Shorter Waits for Cancer Treatment. Wellington: Ministry of Health. National Lung Cancer Working Group. 2011. Standards of Service Provision for Lung Cancer Patients in New Zealand. Wellington: Ministry of Health. NCCN. 2012. NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) – Thyroid Carcinoma (version 3). Fort Washington: National Comprehensive Cancer Network (member access only). NHS Wales. 2005. National Standards for Thyroid Cancer Services. Cardiff: NHS Wales. Introduction ATA Guidelines Taskforce on Thyroid Nodules and Differentiated Thyroid Cancer, Cooper DS, Doherty GM, et al. 2009. Revised American Thyroid Association management guidelines for patients with thyroid nodules and differentiated thyroid cancer. Thyroid 19(11): 1167–1214. 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Standards of Service Provision for Thyroid Cancer Patients in New Zealand Provisional 47 Ministry of Health. 2012a. Cancer: New Registrations and Deaths 2009. Wellington: Ministry of Health. Ministry of Health. 2012b. Rauemi Atawhai: A guide to developing health education resources in New Zealand. Wellington: Ministry of Health. Prevention and early identification ATA Guidelines Taskforce on Thyroid Nodules and Differentiated Thyroid Cancer, Cooper DS, Doherty GM, et al. 2009. Revised American Thyroid Association management guidelines for patients with thyroid nodules and differentiated thyroid cancer. Thyroid 19(11): 1167–1214. British Thyroid Association, Royal College of Physicians. 2007. Guidelines for the Management of Thyroid Cancer (2nd edition). London: British Thyroid Association, Royal College of Physicians. Ministry of Health. 2012b. Rauemi Atawhai: A guide to developing health education resources in New Zealand. Wellington: Ministry of Health. NCCN. 2012. 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