Standards of Service Provision for Gynaecological Cancer Patients in New Zealand – Provisional

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Standards of Service Provision for Gynaecological Cancer Patients in New Zealand – Provisional

National Gynaecological Cancer Tumour Standards Working Group

2013

Citation: National Gynaecological Cancer Tumour Standards Working Group. 2013. Standards of Service Provision for Gynaecological 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 978-0-478-41558-2 (online)
HP 5758

This document is available through the Ministry of Health website:  HYPERLINK “http://www.health.govt.nz” www.health.govt.nz
or from the regional cancer network websites:
HYPERLINK “http://www.northerncancernetwork.org.nz” www.northerncancernetwork.org.nz
www.midland cancernetwork.org.nz
HYPERLINK “http://www.centralcancernetwork.org.nz” www.centralcancernetwork.org.nz
www.southerncancernetwork.org.nz

Contents

TOC \o “1-2” Introduction PAGEREF _Toc373335810 \h 1

Background PAGEREF _Toc373335811 \h 1

Objective PAGEREF _Toc373335812 \h 1

How the gynaecological cancer tumour standards were developed PAGEREF _Toc373335813 \h 2

Equity and Whānau Ora PAGEREF _Toc373335814 \h 2

Summary of the clinical standards for the management of gynaecological cancer services PAGEREF _Toc373335815 \h 5

Standards of service provision pathway PAGEREF _Toc373335816 \h 7

Summary of standards PAGEREF _Toc373335817 \h 8

1 Timely access to services PAGEREF _Toc373335818 \h 12

Rationale PAGEREF _Toc373335819 \h 12

Good practice points PAGEREF _Toc373335820 \h 13

2 Referral and communication PAGEREF _Toc373335821 \h 15

Rationale PAGEREF _Toc373335822 \h 15

Good practice points PAGEREF _Toc373335823 \h 15

3 Investigation, diagnosis and staging PAGEREF _Toc373335824 \h 17

Rationale PAGEREF _Toc373335825 \h 17

Good practice points PAGEREF _Toc373335826 \h 18

4 Multidisciplinary care PAGEREF _Toc373335827 \h 20

Rationale PAGEREF _Toc373335828 \h 20

Good practice points PAGEREF _Toc373335829 \h 21

5 Supportive care PAGEREF _Toc373335830 \h 23

Rationale PAGEREF _Toc373335831 \h 23

Good practice points PAGEREF _Toc373335832 \h 24

6 Care coordination PAGEREF _Toc373335833 \h 25

Rationale PAGEREF _Toc373335834 \h 25

Good practice points PAGEREF _Toc373335835 \h 26

7 Treatment PAGEREF _Toc373335836 \h 27

Rationale PAGEREF _Toc373335837 \h 27-31

Good practice points PAGEREF _Toc373335838 \h 28-31

8 Follow-up and surveillance PAGEREF _Toc373335841 \h 32

Rationale PAGEREF _Toc373335842 \h 32

Good practice points PAGEREF _Toc373335843 \h 32

9 Clinical performance monitoring and research PAGEREF _Toc373335844 \h 34

Rationale PAGEREF _Toc373335845 \h 34

Good practice points PAGEREF _Toc373335846 \h 34

Appendix 1: National Gynaecological Cancer Tumour Standards Working Group membership PAGEREF _Toc373335847 \h 36

Appendix 2: Glossary PAGEREF _Toc373335848 \h 37

Appendix 3: The gynaecological cancer patient pathway PAGEREF _Toc373335849 \h 42

Appendix 4: References PAGEREF _Toc373335850 \h 43

Introduction

Background

Gynaecological cancers are a relatively uncommon and diverse group of cancers. They include malignancies anywhere in a woman’s reproductive system or genital area; namely ovarian and fallopian tube, cervical, vaginal, vulval and uterine malignancies. Other tumours arising in the female genital tract have variable malignant behaviour (eg, primary epithelial tumours arising in the female peritoneum; persistent gestational trophoblastic neoplasia; borderline epithelial ovarian tumours; and stromal tumours of uncertain malignant potential arising in the female genital tract). Gynaecological cancers make up approximately 10 percent of all cancer cases and 10 percent of all cancer deaths in New Zealand women. They affect about 915 New Zealand women a year (987 women in 2008). Endometrial (sometimes referred to as uterine) cancer is the most common gynaecological cancer in New Zealand, followed by ovarian and cervical cancers. In 2007 there were 402 deaths due to gynaecological cancer, as follows:

65 cervical

81 endometrial

199 ovarian

57 other (Ministry of Health 2010a).

The standards in this document apply to all women in New Zealand with gynaecological cancer, regardless of age, domicile, ethnic and socioeconomic group or district health board (DHB) of residence.

It is recognised that there are inequities of outcomes and access to treatment for New Zealand women with gynaecological cancer.

Gynaecological cancer services in New Zealand have developed regionally according to local conditions and circumstances, rather than being centrally organised according to evidence-based best practice. Specialised gynaecological cancer services are essential for New Zealand women and their families, but are small and vulnerable. A national approach to service provision will ensure equity of access and sustainability of quality services.

Objective

Tumour standards 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 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.

The first tumour-specific national standards developed were 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 ten additional tumour types: bowel, breast, gynaecological, lymphoma, melanoma, myeloma, head and neck, sarcoma, thyroid and upper gastrointestinal.

How the gynaecological cancer tumour standards were developed

A skilled working group representing key specialties and interests across the gynaecological cancer pathway of care developed the standards. The group was chaired by a lead clinician and had access to expert advisors in key content areas, including from the Southern Cancer Network Māori Leadership Group.

In the development of these standards, existing evidence-based standards, clinical guidelines and patient pathways were referred to; where no clear evidence was available, expert opinion was obtained through the National Gynaecological Cancer Tumour Standards Working Group and its advisors.

The Ministry of Health required the tumour stream work group 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 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 (Signal et al 2008).

Māori and Pacific Island women have higher incidences of and mortality from endometrial and cervical cancers (Robson and Harris 2007; Harris et al 2012; McLeod et al 2011). Specific evidence shows that Māori women have poorer access to quality health care, and their survival rates tend to be worse (Hill et al 2013; Soeberg et al 2012). In addition, other medical conditions may impact on treatments and the outcome of treatments.

Table 1: Relative incidence and mortality for endometrial and cervical cancer, by ethnicity, 2000–2004

MāoriNon-MāoriMāoriNon-MāoriMāoriNon-MāoriMāoriNon-MāoriEndometrial169140010.56.7473682.91.3Cervix17473110.95.8652584.01.3Note: Table adapted from Robson and Harris 2007. Rates are calculated per 100,000, age‑standardised to the 2001 Māori population.

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 into account all the influences on health and how they can be tackled to improve health outcomes.

Health literacy has been recognised as a prohibitor to engagement by at-risk patients and their families/whānau. Health literacy is a key component to clinical best practice and improved clinical outcomes for Māori (Ministry of Health 2010c).

In order to improve outcomes, research should continue to identify causes of and solutions to inequity.

Beyond humanitarian and ethical considerations, our obligations to the Treaty of Waitangi require that optimal heath care be made accessible to both Māori and non-Māori women. In order to meet Māori needs and reduce inequalities, cancer care services need to be focused on Māori priorities. This may involve the reorientation of existing services and the development of new services or initiatives, as well as strengthening the role of effective service delivery models (Ministry of Health 2002). All staff responsible for engagement with patients and their families/whānau should undertake and complete Treaty of Waitangi, tikanga and cultural competency training.

In terms of the health of Pacific Island women, Ala Mo’ui: Pathways to Pacific Health and Wellbeing 2010–2014 (Minister of Health and Minister of Pacific Island Affairs 2010) sets out the priority outcomes and actions needed to improve outcomes for Pacific people, families and communities.

District health boards and service providers, including gynaecological cancer treatment centres and gynaecological cancer treatment units, should continue to engage with non-governmental organisations, consumer networks and representatives, and Māori, Pacific and Asian and other groups, to ensure that services are equally accessible and acceptable to all groups.

These standards recognise the difficulties caused by inequities, and a major focus is ensuring equity of access for all women. Due to a number of factors, not all women in New Zealand have equal access to treatments or outcomes from gynaecological cancers. One way of improving outcomes is to ensure that all women have equal access to expert medical and supportive care, regardless of ethnicity, where they live or their socioeconomic status.

To achieve optimal outcomes and quality of life, it is important to ensure women have appropriate access to health care professionals and the extended allied health care team who have detailed knowledge of gynaecological cancers.

Whānau Ora

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 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 gynaecological cancer in the following ways.

The standards focus on improving access to diagnosis and treatment for all patients, including Māori and Pacific.

Ethnicity data will be collected on all access measures and the FCT indicators, and will be used to identify and address disparities.

A did-not-attend (DNA) reduction strategy and follow-up policy will be equity-focused.

Information developed or provided to patients and their family will meet Ministry of Health guidelines (Ministry of Health 2012e).

Māori and Pacific women will be linked to Māori and Pacific nurse coordinators or providers where possible.

Summary of the clinical standards for the management of gynaecological cancer services

Institutional requirements and definitions

To meet the standards, a coordinated approach to secondary and tertiary referral of patients is required. In addition, hospitals providing care for women with gynaecological cancer need to be adequately equipped and staffed to do so.

For the purposes of this document, the following definitions of gynaecological cancer treatment centres and gynaecological cancer treatment units are used, as per the United Kingdom framework (Expert Advisory Group on Cancer to the Chief Medical Officers of England and Wales 1995).

Gynaecological cancer treatment centres provide a comprehensive range of treatments for women with gynaecological cancer. Their functions include:

providing specialist surgery by a gynaecological oncologist

hosting the regional multidisciplinary team (MDT)

convening and coordinating multidisciplinary meetings (MDMs) and ensuring all women in the region have timely access to the MDM

referring patients whose surgical treatment can be appropriately provided at local level back to their local surgeon

providing consultation and liaison services to secondary and sub-regional centres

ensuring regional information flows and patient pathways are in place and understood by key stakeholders.

Gynaecological cancer treatment units are provided within every secondary care hospital. Their functions include:

providing timely, comprehensive information and referral to the regional multidisciplinary conference

providing 24/7 local gynaecology assessment and treatment services, including surgical treatment of cancers by appropriately credentialled surgeons on advice from the MDM

providing consultation and liaison services to primary care providers.

A comprehensive gynaecological cancer treatment centre should have the following staff:

resident gynaecological oncologists

medical oncologists with a special interest in gynaecological malignancy

radiation oncologists with a special interest in gynaecological malignancy and expertise in brachytherapy

pathologists and radiologists with a special interest in gynaecological malignancy

gynaecological oncology clinical nurse specialists

palliative care specialists

psychologists

fertility services

kaiāwhina (Māori support workers)

allied health professionals, including social workers, physiotherapists, occupational therapists, dieticians, specialist lymphoedema treatment providers and counsellors, including sexual counsellors.

It should have the following facilities:

dedicated inpatient gynaecological oncology beds

access to external beam therapy and brachytherapy

systemic therapy treatment facilities (inpatient and outpatient)

tertiary-level intensive care

tertiary-level diagnostic and interventional radiology

support from other tertiary-level surgical and medical services.

Gynaecological cancer treatment ‘units’ within hospitals may offer a variety of treatments for women with gynaecological cancer without being a comprehensive service. All should have a lead medical clinician for gynaecological oncology and a nurse with specialist knowledge of gynaecological cancer care. These staff should be responsible for coordinating MDM referral and patient care with the tertiary centre.

Comprehensive gynaecological cancer treatment centres should play a key role in service provision, care coordination and support for gynaecological cancer treatment units.

Key to these standards is the multidisciplinary review for all women with gynaecological cancer. MDM review is time–consuming, and lacks formal recognition for funding purposes. This has a particular impact on administrative, pathology and radiology resources. This discrepancy needs to be addressed; it is essential that MDM resources are used efficiently.

In order to sustain a high quality service it is important that the following issues are addressed.

To ensure equitable access to specialist services, gynaecological cancer treatment centres that offer a comprehensive range of treatments for gynaecological cancer are accredited by an external process.

For the sustainability of the comprehensive gynaecological cancer treatment centre, core staff expertise is duplicated and succession planning is addressed.

Training fellowship posts are established to ensure workforce sustainability in core disciplines.

Gynaecological cancer treatment centres work collaboratively (comparing outcome data and agreeing on treatment protocols) to ensure that similar standards of care exist in different regions.

Format of the standards

Each cluster of standards has a title that summarises the step of the patient journey or the area on which the standards are focused. This is followed by the standard itself, which explains the level of performance to be achieved. The rationale section explains why the standard is considered to be important.

Attached to the clusters of standards are good practice points. Good practice points are either supported by the international literature, the opinion of the National Gynaecological Cancer Working Group or the consensus of feedback from consultation with New Zealand clinicians involved in providing care to patients with gynaecological cancer. Also attached to each cluster are the requirements for monitoring the individual standards.

Standards of service provision pathway

The gynaecological cancer standards are reflected in the following pathway.

SHAPE  \* MERGEFORMAT

Summary of standards

The standards for the management of gynaecological cancer have been divided into nine clusters:

1 timely access to services

2 referral and communication

3 investigation, diagnosis and staging

4 multidisciplinary care

5 supportive care

6 care coordination

7 treatment

8 follow-up and surveillance

9 clinical performance monitoring and research.

There are no standards in this document that relate to prevention or screening. This does not diminish the importance of prevention and early diagnosis of gynaecological cancers; population-based preventive intervention is of the utmost importance. The National Gynaecological Cancer Tumour Standards Working Group endorses effective population-based interventions that reduce smoking rates, reduce obesity rates, reduce socioeconomic inequalities, improve access to primary health care, improve health literacy and encourage healthy living – thereby reducing the incidence and impact of gynaecological cancers.

The National Gynaecological Cancer Tumour Standards Working Group recognises the enormous importance and success of the National Cervical Screening Programme (NCSP) in the prevention of cervical cancer through the identification and treatment of premalignant conditions, and endorses the NCSP’s policies, standards and guidelines.

The National Gynaecological Cancer Tumour Standards Working Group also recognises the potential for a reduction in mortality and morbidity related to cervical cancer and other human papilloma virus-related conditions through the vaccination of young women, and supports the national vaccination programme.

Although risk factors and protective factors have been identified for gynaecological cancers, there is no strong evidence on effective prevention. There are currently no effective screening tools available for gynaecological cancers aside from cervical cancer.

In general terms, early diagnosis of gynaecological cancers should be facilitated through the education of health practitioners and patients in the symptoms and signs of gynaecological cancers and widespread recognition of premalignant conditions of the genital tract. The National Gynaecological Cancer Tumour Standards Working Group supports the development of evidence-based information on this subject.

Early referral of patients with a high suspicion of gynaecological cancer and identification of individuals with a genetic predisposition to gynaecological cancer are important, and are covered further in the document (see ‘Referral and communication’).

The standards are as follows.

Timely access to services

Standard 1: The following timeframes are met.

Women referred urgently with a high suspicion of gynaecological cancer have their first specialist assessment (FSA) within 14 days.

Women with a confirmed diagnosis of gynaecological cancer receive their first treatment within 31 days of the decision to treat.

Women referred urgently with a high suspicion of gynaecological cancer receive their first cancer treatment within 62 days.

Women needing radiotherapy or systemic therapy receive their first treatment within four weeks of the decision to treat.

Standard 2: Women with postmenopausal bleeding or clinical suspicion of a pelvic mass are offered an appointment for a pelvic ultrasound that falls within two weeks of the date of receipt of that referral.

Referral and communication

Standard 3: Women with suspected gynaecological cancers are referred to secondary or tertiary care following an agreed referral pathway.

Standard 4: Women are provided with verbal and written information and their general practitioners (GPs) with written information about their gynaecological cancer, diagnostic procedures, treatment options (including effectiveness and risks), final treatment plan and support services.

Standard 5: Communications between health care providers include the woman’s name, date of birth, national health index (NHI) number and contact details, and are ideally electronic.

Investigation, diagnosis and staging

Standard 6: Women with a new diagnosis of gynaecological malignancy are offered an appointment for radiological investigations required for treatment planning that falls within two weeks of the date of receipt of that referral.

Standard 7: Imaging investigations follow standardised imaging pathways agreed to by the New Zealand gynaecological cancer treatment centres.

Standard 8: Women with a provisional histological diagnosis of gynaecological cancer have their diagnosis reviewed and confirmed by a specialist gynaecological oncology pathologist affiliated to a gynaecological oncology MDM.

Standard 9: The histology of excised gynaecological cancer specimens is recorded in a synoptic format (where this format has been agreed).

Standard 10: Women with gynaecological cancer are staged according to the International Federation of Gynaecology and Obstetrics (FIGO) staging classification.

Multidisciplinary care

Standard 11: All women with gynaecological cancer, borderline ovarian tumours or gestational trophoblastic neoplasia have their treatment plan discussed at an MDM; recommendations are clearly documented in the woman’s medical records and communicated to the woman and her GP.

Standard 12: The MDM discussion takes place within 14 days of referral (provided referral criteria are met).

Supportive care

Standard 13: Women with gynaecological 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).

Standard 14: Formal (validated) psychosocial assessments are undertaken at key points of women’s cancer journeys.

Care coordination

Standard 15: Women with a diagnosis of gynaecological cancer have contact with their gynaecological cancer clinical nurse specialist or other health professional who will help coordinate her care within seven days of receipt of their diagnosis.

Treatment

Standard 16: Where appropriate, women with a gynaecological cancer have access to treatment at an appropriately staffed gynaecological cancer treatment centre.

Standard 17: Women requiring radical surgery for the following conditions:

ovarian cancer or a high clinical suspicion of ovarian cancer (risk of malignancy index (RMI) >200)

cervical cancer

vulval cancer

are operated on by a gynaecological oncologist or a specifically credentialled gynaecological surgeon operating in a comprehensive gynaecological cancer treatment centre.

Standard 18: Women requiring radiotherapy with curative intent for cervical cancer receive it in or in conjunction with a gynaecological cancer treatment centre.

Standard 19: Women with a molar pregnancy or gestational trophoblastic neoplasia (GTN) receive careful follow-up care from a designated practitioner or service in accordance with a well-documented protocol.

Standard 20: Women 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 21: Follow-up plans include clinical review by appropriate members of the MDT, working in conjunction with the woman, their family/whānau, their GP and where appropriate the referring gynaecologist.

Clinical performance monitoring and research

Standard 22: Data relating to gynaecological cancer beyond the fields required by the Cancer Registry, including treatment data, are reported to existing (and planned) national repositories using nationally agreed dataset fields.

Standard 23: To ensure an ongoing equity focus, all outcome data and standards monitoring are reported by ethnicity and domicile.

Standard 24: Women and their family/whānau have access to tumour-specific outcome data reported from comprehensive gynaecological cancer treatment centres.

Standard 25: Women who are treated at comprehensive gynaecological cancer treatment centres have access to relevant (selected) multi-centre clinical trials.

1 Timely Access to Services

Rationale

Timely access to quality cancer management is important to support good health outcomes for women with a gynaecological cancer. Long waiting times can result in delayed symptom management, and may affect local control and survival for some cancer patients.

A suspicion of cancer or cancer diagnosis is very stressful for patients and family/whānau. It is important that patients and family/whānau have a clear expectation about how quickly patients can receive treatment.

The standards in this cluster ensure that:

patients receive appropriate clinical care within a reasonable timeframe

patients experience well-coordinated service delivery

delays are minimised.

There is evidence that Māori patients wait longer for cancer care than non-Māori (Hill et al 2010). Timed patients pathways help ensure all patients, regardless of ethnicity, receive timely care.

Shorter waits for cancer treatments is a government health target. The FCT indicators (Ministry of Health 2012b) adopt a timed patient pathway approach across surgical and non-surgical cancer treatment, and apply to inpatients, outpatients and day patients.

While the FCT waiting times are suitable timeframes for the majority of patients, waiting times for patients with significant symptomatology or rapidly growing tumours should be shorter.

Gynaecological cancers have a variety of presentations and symptoms; some are tumour-specific and some are not. For further information see Expert Advisory Group on Cancer to the Chief Medical Officers of England and Wales 1995; National Breast Cancer Centre, Incorporating the Ovarian Cancer Program 2004; NICE 2010; Scottish Cancer Group and NICE 2002; Buys et al 2011; Cancer Australia 2012; NCSP 2008; Jones et al 2008; Neill et al 2010.

Good practice points

1.1 DHBs establish pathways to ensure prompt referral and diagnosis for women with postmenopausal bleeding (Canterbury District Health Board 2009).

1.2 A differential diagnosis of gynaecological cancer is considered in all women with any abnormal vaginal bleeding, unexplained vaginal discharge, pelvic pain, urinary frequency or retention, abdominal bloating, change in bowel habit, vulval pain or itching.

1.3 All women with suspicious symptoms undergo vulval, pelvic and speculum examinations by a primary health practitioner with experience of gynaecological examinations.

1.4 Women with abnormal menstrual bleeding are managed as per the Guidelines for the Management of Heavy Menstrual Bleeding (NZGG 1998) or a similar locally developed pathway.

1.5 Pipelle biopsy is considered for women with abnormal vaginal bleeding, as it may expedite the diagnosis of endometrial cancer.

1.6 A cervical or vaginal smear may assist with the diagnosis of gynaecological malignancy, but a normal result does not exclude malignant disease.

1.7 An ultrasound scan is performed if a pelvic mass is suspected.

1.8 A CA125 is performed in all postmenopausal women with a complex ovarian mass, and an RMI calculated (Jacobs et al 1990; NICE 2010 (Appendix D); Society of Obstetricians and Gynaecologists of Canada 2008).

1.9 Women under 25 with a large complex mass have germ cell markers assayed (human chorionic gonadotrophin (HCG) and alpha feto protein (AFP)).

1.10 An urgent gynaecological opinion is sought for women with an ultrasound diagnosis of a complex ovarian mass of between 5 cm and 8 cm.

1.11 Women with an undiagnosed macroscopic lesion consistent with vulval carcinoma, melanoma, premalignant disease or vulval dermatosis are reviewed by a gynaecologist and/or undergo a (diagnostic/incisional/punch) biopsy.

1.12 Women with vulval intraepithelial neoplasia (VIN) and lichen sclerosus are made aware of their increased risk of vulval cancer and undergo regular follow-up.

1.13 A gynaecologist’s opinion is sought urgently for women with persistent symptoms (over three months) of postmenopausal, inter-menstrual or post-coital bleeding; vaginal discharge; vulval irritation; pain; or itching, in the absence of prior high suspicion within four weeks (expert advice).

Monitoring requirements

2 Referral and Communication

Rationale

The purpose of the referral pathway is to ensure that all patients with suspected gynaecological cancer are referred to the most appropriate health care services, and that the referral includes appropriate information in a standardised form.

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

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

Cancer treatments can have significant immediate and long-term implications for function and quality of life. Patients need to be made aware of these likely effects so that they can make decisions about or between treatments.

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

Good practice points

2.1 All information developed for or provided to patients and their family/whānau is in plain language and meets guidelines set out in Rauemi Atawhai: A guide to developing health education resources in New Zealand (Ministry of Health 2012e).

2.2 Locally and regionally, systems are developed to ensure timely communication and referral between primary health practitioners, general gynaecology and gynaecological oncology, medical oncology, radiation oncology, pathology, medical imaging and palliative care services.

2.3 Gynaecological cancer services have a did-not-attend (DNA) reduction and follow-up policy that entails equity-focused quality assurance. The incidence of DNAs is monitored.

2.4 All communications between health care providers are electronic where possible.

Monitoring requirements

3 Investigation, Diagnosis and Staging

Rationale

Radiological investigations

Radiological imaging is a key step in treatment planning for most women with gynaecological cancer.

Delay in receipt and review of radiological investigations is a significant cause of treatment delay. In order to comply with FCT timelines, important radiological investigations must be completed promptly.

Nationally agreed imaging pathways for the pre-treatment investigation of women with gynaecological cancer will optimise the efficient use of radiology resources, minimise delays and ensure equity of access to specialist imaging.

Review by a radiologist with experience in gynaecological imaging improves the quality of diagnosis and management.

Pathology review

The correct pathological diagnosis of gynaecological cancers is key to their management.

Gynaecological cancers encompass a large variety of uncommon and rare entities. Two factors serve to improve the accuracy of pathology reporting:

review of pathology by an expert pathologist

standardised reporting.

The Royal College of Pathologists of Australasia has developed structured reporting protocols for both endometrial and vulval cancer.

Reporting times for pathology investigations may have a significant impact on the patient pathway, and long waits for results may be stressful to patients. Accurate reporting is time-consuming but of the utmost importance; accuracy should not be sacrificed for the sake of expediency.

Due to the scarcity of expertise in gynaecology pathology, workforce development and planning is important. Currently pathologists tend to take a lead role based on their interest in gynaecological oncology, and become informally subspecialised.

Development of a subspecialty interest in gynaecological oncology usually requires overseas travel and attachment to specialist units.

Staging

FIGO staging is an internationally agreed system that incorporates pathological and clinical information. It is designed to allocate patients to prognostic groups so that outcomes can be compared. Staging should be discussed and documented at MDMs.

Good practice points

Radiological investigations

3.1 Radiological investigations may include:

for all women: chest imaging and pelvic ultrasound

for women with a high suspicion of ovarian cancer: a computed tomography (CT) scan

for women with endometrial cancer: magnetic resonance imaging (MRI) and/or a CT scan

for women with cervical or vaginal cancer: an MRI, a CT scan and/or a positron emission tomography (PET) scan

for women with vulval cancer: a CT scan and/ or MRI.

3.2 Pre-treatment radiological investigations are reviewed by a radiologist with experience in gynaecological imaging as part of the MDM process.

Pathology review

3.3 Provisional or final pathology reports are communicated with the lead clinician within 10 working days of the specimen being taken.

3.4 Criteria for the credentialling of referral (special interest) gynaecology pathologists are developed.

Monitoring requirements

4 Multidisciplinary Care

Rationale

The successful management of gynaecological cancers frequently involves the collaborative expertise of health professionals from a number of different disciplines.

Effective MDMs result in positive outcomes for patients. Benefits include improved treatment planning, better communication between care providers, and enhanced continuity of care and coordination of services, resulting in improved equality of outcomes for patients with cancer. MDM discussion of all cases is the best way to ensure all women with gynaecological cancer have access to appropriate evidence-based treatments that will improve their outcomes.

Review of women’s cases at an MDM often modifies a management recommendation; therefore, it is appropriate that this take place before any definitive treatment. In many cases, it is necessary to discuss a patient twice (before and after surgical treatment).

In order to be effective, MDMs need to be part of a comprehensive gynaecological cancer service. Key areas from which input is required for discussion of the management of patients with gynaecological cancer include pathology, radiology, gynaecological oncology, medical oncology, radiation oncology and nursing with specific understanding of women with gynaecological cancer and knowledge of their medical comorbidities and psychosocial circumstances.

It is crucial that the conduct of the MDM is formalised, to ensure valid discussion and accurate documenting of the outcome of the meeting.

Good practice points

4.1 A comprehensively staffed gynaecological MDM includes, at minimum: a gynaecological oncologist, a medical oncologist, a radiation oncologist, a radiologist, a clinical nurse specialist or care coordinator and a pathologist, all of whom regularly attend gynaecological cancer MDMs. The referring clinician or delegated deputy is also present, and there is an adequately resourced dedicated MDM coordinator/data manager.

4.2 Discussion at the MDM includes:

review of pathology by a pathologist with a special interest in gynaecological pathology, who regularly attends the gynaecological oncology MDM

documentation of treatment recommendations agreed by the MDM participants

formal allocation and documentation of staging, as per the FIGO system

Documentation of MDM proceedings is collected and made available as part of a woman’s medical record.

4.3 Criteria and information requirements for referral to regional MDMs are developed and agreed nationally.

4.4 For women with gynaecological cancer or a high clinical suspicion of ovarian cancer, MDM review occurs prior to definitive management (unless acute illness requires immediate intervention) and after surgery, to plan post-operative treatment.

4.5 Women are informed about MDM recommendations by an identified clinical team member. Following consultation with members of the treating team, women make the final decision about their treatment and care plan.

4.6 Review at MDM is considered for women with gynaecological cancer who have recurrent disease.

4.7 Options for fertility preservation are discussed with all women of childbearing age prior to definitive management.

4.8 Discussion between paediatric and gynaecological oncology MDMs is appropriate for women under the age of 20 with gynaecological tumours.

4.9 Discussion between MDMs is appropriate in cases of gynaecological melanoma, sarcoma and haematological tumours.

4.10 To ensure sustainability and contingency for absence, multiple team members from single specialty groups attend the MDM regularly.

4.11 The MDM takes a regional team approach to use and foster regional expertise in gynaecological pathology and radiology services.

4.12 Protocols for expedited MDM review are agreed nationally.

4.13 MDM protocols are consistent with Ministry of Health guidance for implementing quality MDMs (Ministry of Health 2012c).

Monitoring requirements

5 Supportive Care

Rationale

Supportive care and rehabilitation services for women with gynaecological cancer include the essential services required to meet a women’s physical, social, cultural, emotional, nutritional, informational, psychological, spiritual and practical needs throughout their experience with cancer, according to Guidance for Improving Supportive Care for Adults with Cancer in New Zealand (Ministry of Health 2010b).

Gynaecological cancers and their treatments present particular challenges for women and their family/whānau, including but not restricted to psychosexual issues, fertility issues, gynaecological endocrine management and lymphoedema. For further information, see Western Australia Cancer & Palliative Care Network 2009; Ministry of Health 2006; Breslau et al 2010 and the National Standards for Supportive Care developed by Psychosocial Oncology New Zealand and the Cancer Society as part of the development of tumour stream standards (2013).

To accommodate the specific needs of women with gynaecological cancer and their families, access to the following allied health professionals is essential:

psycho-oncology services (social work and counselling, including psychosexual counselling)

occupational therapy

physiotherapy

specialist lymphoedema services

gynaecological endocrine advice

fertility services.

Non-governmental organisations, including the Cancer Society, also perform an important role in providing supportive care.

Good practice points

5.1 Health professionals are trained on the use of assessment tools for distress within their scope of practice.

5.2 A structured and timely referral process is used to refer women to appropriately skilled professionals within the hospital and the allied health community who can address their specific needs.

5.3 All women with a gynaecological cancer are treated in a manner that is individualised and respectful in the context of their cultural, spiritual and ethical beliefs.

5.4 All Māori women and their family/whānau are offered an opportunity to access Whānau Ora assessments and cultural support services.

5.5 Women with gynaecological cancer and their families are referred to culturally appropriate support services.

5.6 Clinical and supportive care information, written and verbal, is provided in language that is clear, accurate and unbiased, and respectful of women’s cultural, spiritual and ethical beliefs.

5.7 Referral to adolescent and young adult cancer services is appropriate for women under the age of 25.

5.8 Up-to-date supportive care services directories are accessible by all staff and people affected by cancer.

5.9 Equitable access to information on the National Travel Assistance Scheme and accommodation providers within each region is readily available to patients who need it.

Monitoring requirements

6 Care Coordination

Rationale

The cancer journey is complex, and it is not uncommon for a patient to be seen by many specialists within and across multiple DHBs and across the public and private sectors.

‘Care coordination’ refers to a system or a role that aims to:

provide continuity of care for women with gynaecological cancer throughout their journey: referral, diagnosis, treatment, post-treatment, palliation and terminal care

improve the experience of women with gynaecological cancer or suspected gynaecological cancer and their family/whānau

improve overall access and timeliness of access to diagnostic and treatment services for women with gynaecological cancer.

Gynaecological cancer clinical nurse specialists/care coordinators have an in-depth knowledge of the gynaecological cancer care pathway, and can act as an advocate for women, facilitating the coordination of the diagnostic and treatment pathway, providing continuity and ensuring equitable access.

Gynaecological cancer clinical nurse specialists are an essential part of the MDT within a comprehensive gynaecological cancer treatment centre. Their key responsibilities include:

early identification and assessment of women with the greatest need of support

provision of information, support and expert nursing care throughout the cancer continuum

management of treatment side-effects, including psychosexual issues

care coordination

ensuring best-practice nursing service provision and continuous quality improvement through research and quality initiatives

provision of specialist expertise and availability as a resource to care coordinators, nurses, GPs and other health professionals

collaboration with other health professionals to improve outcomes for women.

Good practice points

6.1 Women, their GPs and other health care providers are given the name of a particular clinical nurse specialist or care coordinator, who becomes a single point of contact for that woman and their family/whānau throughout their cancer journey. In some instances, such as during long-term follow up, this role may be undertaken by other staff; for example, a primary care team member, as appropriate (NICE 2004).

6.2 When patients transfer between regional areas and local services, discharge planning is comprehensive.

6.3 Care coordinators link Māori and Pacific women and those from other cultural groups to culturally specific cancer support services (Cumming 2008).

6.4 Services develop strategies to ensure coordination of care.

6.5 Care coordination is included in all health professionals’ practice.

6.6 Lead clinicians in gynaecological cancer treatment units and comprehensive gynaecological cancer treatment centres develop a structure for liaison to ensure seamless care coordination.

Monitoring

7 Treatment

Rationale

Due to the multidisciplinary nature of many treatments for gynaecological cancer, the rarity of many of the conditions and the limited numbers of personnel with relevant training and expertise, not all treatments for gynaecological cancer can be offered to all patients in all locations.

For some gynaecological tumour types, there is evidence that outcomes are improved if treatment is performed in a tertiary centre (Vernooij 2008).

Planning and undertaking many gynaecological cancer surgeries is beyond the scope of general training in obstetrics and gynaecology (Royal Australian and New Zealand College of Obstetricians and Gynaecologists 2010).

Multiple systematic reviews have demonstrated that enhanced recovery after surgery protocols reduce post-operative morbidity and length of hospital stay.

For information on the nature and treatment of epithelial ovarian, fallopian tube and primary peritoneal cancer, see Alsop et al 2012; Elattar et al 2011; Kauff and Barakat 2007; Monk et al 2005; National Breast Cancer Centre, Incorporating the Ovarian Cancer Program 2004; Tangjitgamol et al 2008; and Vernooij 2008.

For information on the nature and treatment of endometrial cancer, see Rogers et al 2009.

For information on the nature and treatment of cervical cancer, see Hacker et al 1981 and Health Outcomes International Ltd 2011.

For information on the nature and treatment of vulval cancer, see Aranda and Yates 2009 and Campbell et al 2010.

Good practice points

Treatment that applies to all gynaecological malignancies

7.1 Gynaecological cancer treatments are in accordance with nationally agreed and regularly updated treatment protocols.

7.2 All women and their family/whānau have the opportunity to discuss treatment options and plans with a member of the MDT.

7.3 Enhanced recovery after surgery protocols are utilised, to reduce post-operative morbidity and length of hospital stay.

7.4 Surgeons consult with women and their family/whānau undergoing surgery for cancer about final disposal of tissue or body parts surgically removed (modified NZGG 2009).

Brachytherapy target volumes for cervical or vaginal cancer should be determined by MRI, with applicators in situ.

Brachytherapy target volumes requiring interstitial apparatus or complex planning should be determined by MRI, with needles or apparatus in situ.

Treatments specific to epithelial ovarian, fallopian tube and primary peritoneal cancer

7.6 Where women with advanced ovarian cancer receive debulking surgery, adequate expertise, time and facility resources are allocated to ensure optimal debulking.

7.7 Platinum-based chemotherapy is considered for all women with epithelial ovarian cancer.

7.8 Excessive delays are avoided before post-operative treatment.

7.9 Primary chemotherapy is discussed at the MDM for women with suspected advanced ovarian cancer.

7.10 Interval debulking surgery is discussed at the MDM for women with diagnosed advanced ovarian cancer undergoing primary chemotherapy.

7.11 Women who need it are offered genetic counselling within three months.

7.12 Referral to a genetic counselling service is considered for all women with high-grade serous ovarian carcinomas.

7.13 Where appropriate, women with a known BRCA mutation discuss risk-reducing surgery with genetic counsellor and a gynaecologist with an established interest in familial cancer.

Treatments specific to endometrial cancer

7.14 Removal of the uterus, cervix, ovaries and fallopian tubes is considered for all women with endometrial cancer.

7.15 It may be beneficial for selected women with high-risk endometrial cancer to be operated on by a gynaecological oncologist or a specifically credentialed gynaecologist within a comprehensive gynaecological cancer treatment centre.

7.16 Minimally invasive (laparoscopic) surgery is considered for women with apparently early-stage endometrial cancer.

7.17 Preoperative and/or intra-operative assessment of tumour grade and stage may assist in the selection of patients for lymphadenectomy.

7.18 Radiotherapy and other adjuvant therapy is considered at a gynaecological MDM after hysterectomy for all women.

7.19 A national approach to conservative management of atypical endometrial hyperplasia and endometrial cancer in women of childbearing age is adopted.

7.20 A national approach to genetic testing in women with endometrial cancer is adopted.

7.21 Lynch syndrome is considered when women present with endometrial cancer, particularly if they are less than 50 years old, present with certain histological features or have a personal or family history of colorectal cancer at less than 60 years. Immunohistochemistry for the mismatch repair proteins and/or referral to a clinical genetics service may be appropriate (Kelley 1992).

7.22 For women who have Lynch syndrome with a confirmed mutation, risk-reducing surgery (hysterectomy and bilateral salpingo-oophorectomy from age 40 after childbearing is complete) is discussed.

Treatments specific to cervical cancer

7.23 Radiotherapy is discussed at an MDM for all women with cervical cancer, following completion of radical hysterectomy.

7.24 Careful patient selection minimises the need for radiotherapy following surgery.

7.25 Chemoradiation is considered for all women with cervical cancer requiring potentially curative radiotherapy.

Treatments specific to vulval cancer

7.26 Regional node fields are addressed as part of the treatment for women with vulval cancer with a depth of invasion greater than 1 mm.

7.27 Sentinel node sampling by an experienced team may be considered for selected women with apparent early-stage vulval cancer.

7.28 Radiotherapy is considered at an MDM for all women following completion of radical surgery.

Treatments specific to gestational trophoblastic disease (GTD)

7.29 Histology of molar disease or GTD is reviewed by a gynaecology pathologist regularly attending a gynaecological oncology MDM.

7.30 Women with GTD receive counselling and written information regarding their diagnosis, management, follow-up and future pregnancies.

7.31 Women with GTD are made fully aware of their follow-up plan and who is responsible for communicating with them about this plan.

7.32 The New Zealand Gynaecological Cancer Group Guidelines for Gestational Trophoblastic Disease (updated June 2013) are used in the management of women with GTD.

Monitoring requirements

Rationale

Gynaecological cancer and its treatments 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. The timely involvement of palliative care specialists ensures that patients are offered effective symptom control along with culturally appropriate psychological, social, spiritual and bereavement support in order to optimise quality of life and minimise patient and family/whānau distress (NCCN 2012; NICE 2004).

Good practice points

7.32 Palliative care services are consulted at any stage through the patient’s cancer journey if symptoms are complex or prove difficult to treat.

7.33 Discussion of preferred priorities of care (advance care directives and planning) is recorded when cure is not possible. Wherever possible, this is not left until the terminal stages of the illness.

7.34 Practitioners recognise dying patients in a timely manner, and discuss advance care planning and goals for end-of-life care with patients and their family/whānau using end-of-life care pathways, in hospitals, hospices and other health care settings.

7.35 Patients and their families/whānau are offered palliative care options and information in plain language that is targeted to their particular needs; this is incorporated into their care plans.

7.36 Patients and carers have access to spiritual care, either from their MDT or from community resources (NICE 2004).

7.37 Formal mechanisms ensure that women and their carers and family/whānau have access to bereavement care, information and support services (NICE 2004; Hospice New Zealand 2012).

Monitoring requirements

8 Follow-up and Surveillance

Rationale

There is little data to indicate that follow-up policies influence survival for women with gynaecological cancer. They may, however, provide psychological support to patients and assist with the identification and management of recurrent disease and complications from treatment. Follow-up also offers opportunities for data collection and outcome reporting.

Patients with recurrent disease frequently have multiple options for treatment, some of which may be curative. Treatment should be individualised. Review at an MDM is helpful, and may assist data capture.

The side-effect profile of treatment for gynaecological cancers includes psychosocial morbidity, infertility, bladder dysfunction, vaginal stenosis, dyspaerunea, sexual dysfunction, lymphoedema and bowel dysfunction.

Recent data (Ministry of Health 2012a) suggest that close to two-thirds of people diagnosed with cancer will live more than five years after diagnosis. Following treatment, some women face life-long health challenges as a result of their disease and treatments, including comorbidities, fertility and genetic issues and lifestyle changes.

The overall aim of post-treatment support and guidance is to maximise women’s dignity and independence and reduce the effect that gynaecological cancer and its treatments have on quality of life.

Good practice points

All gynaecological cancers

8.1 National or regional policies on routine follow-up are agreed.

8.2 All women with gynaecological cancer, their referral specialists and their primary health practitioners have access to a written treatment summary and ongoing care plan that includes:

a follow-up plan (including frequency of visits, tests required and designated services)

a nominated point of contact in the case of a clinical concern

assessment of post-treatment sequelae and lifestyle behaviours and referral to appropriate support (eg, a dietitian, a lymphoedema specialist)

advice on evidence-based interventions for healthy lifestyle behaviours.

8.3 Women with gynaecological cancer are screened for comorbidities and unhealthy lifestyle.

8.4 Where appropriate GPs discuss Green Prescriptions as part of the follow-up plan.

Ovarian cancer

8.5 The role of CA125 is discussed with women as part of their individualised follow-up plan.

8.6 Tailored follow-up is provided for women with borderline ovarian tumour; particularly those with advanced disease or whose ovaries remain in situ.

Endometrial cancer

8.7 Women receive regular follow-up, including vaginal and speculum examinations and investigation of vaginal bleeding.

Cervical cancer

8.8 Women receive regular follow-up, including vaginal and speculum examinations and investigation of vaginal bleeding.

8.9 In the absence of radiotherapy, women receive routine follow-up smears.

Vulval cancer

8.10 Women receive regular follow-up, including vulval and speculum examinations and investigation of vaginal bleeding.

Monitoring requirements

9 Clinical Performance Monitoring and Research

Rationale

Data relating to patient volumes, disease site, type and stage, as well as on treatment, outcome and late effects, are used to inform care providers, policy-makers and patients.

Outcomes associated with some gynaecological cancers continue to be suboptimal, and remain active areas of research internationally. Participation in international trials keeps gynaecological cancer treatment centres connected to international best practice, and enables patients and clinicians to access promising new management strategies.

Comprehensive gynaecological cancer treatment centres need to be resourced to enable women to take part in appropriate international multi-centre clinical trials.

Tissue banking is a valuable resource for research in the development of new treatments and laboratory tests.

Good practice points

9.1 Gynaecological cancer treatment centres establish a process for auditing and reporting outcome data, to inform practice improvement.

9.2 Ethnicity data are collected according to Ethnicity Data Protocols for the Health and Disability Sector (Ministry of Health 2004). This is clearly noted in referrals at all stages of the patient journey (McLeod et al 2011).

9.3 A national minimum dataset is agreed upon and a system of outcome reporting agreed and implemented.

9.4 Tumour-specific core data are collected prior to and during the MDM.

9.5 Women are informed that information is being recorded in a database to monitor and evaluate access to and efficacy of services.

9.6 Patient experience surveys are implemented and monitored.

9.7 Gynaecological cancer treatment centres aim to participate in selected multi-centre trials.

9.8 Gynaecological cancer treatment centres support research into the cause and prevention of gynaecological cancers.

9.9 Research into causes and prevention of inequity continues to be supported.

Monitoring requirements

Appendix 1:
National Gynaecological Cancer Tumour Standards Working Group membership

Chair

Assoc Prof Peter Sykes, Obstetrics and Gynaecology, University of Otago and Canterbury DHB

Members

Emma Bell, Project Manager, Southern Cancer Network

Annie Bermingham, Manager, Southern Cancer Network

Dr Sue Brooks, Radiation Oncologist, Auckland DHB

Stephanie Campbell-Wilson, Gynaecology Cancer Clinical Nurse Specialist, Waikato DHB

Dr Kathryn Chrystal, Chair of New Zealand Gynaecological Cancer Group; Medical Oncologist, Auckland DHB

Glynis Cumming, Gynaecology Cancer Clinical Nurse Specialist, Canterbury DHB

Nieves Ehrenberg, Consultant, Sapere Research Group

Dr Lois Eva, Gynaecological Oncologist, Auckland DHB

Dr Anand Gangji, Gynaecologist, Northland DHB

Dr Kate Gregory, Medical Oncologist, Nelson Marlborough DHB

Dr Carol Johnson, Radiation Oncologist, Capital & Coast DHB

Dr Diane Kenwright, Gynaecological Pathologist, Capital & Coast DHB

Dr Digby Ngan Kee, Gynaecologist, MidCentral DHB

Dr Ai Ling Tan, Gynaecological Oncologist, Auckland DHB

Dr Michelle Vaughan,  Medical Oncologist, Canterbury DHB

Appendix 2:
Glossary

Appendix 3: The gynaecological cancer patient pathway

SHAPE  \* MERGEFORMAT

Appendix 4: References

Development of the gynaecological cancer standards was informed by key national and international documents. Those documents that most directly influenced the development of the standards are listed below.

Cohen P, Tan AL, Penman A. 2009. The multidisciplinary tumor conference in gynecologic oncology – does it alter management? International Journal of Gynecological Cancer 19(9): 1470–2.

Expert Advisory Group on Cancer to the Chief Medical Officers of England and Wales. 1995. A Policy Framework for Commissioning Services. London: National Health Service.

Health Outcomes International Ltd. 2011. An Implementation Plan for the Guidance for Improving Supportive Care for Adults with Cancer in New Zealand. Auckland: Health Outcomes International Ltd.

Ministry of Health. 2012b. Faster Cancer Treatment Indicators: Data definitions and reporting for indicators. Wellington: Ministry of Health.

Ministry of Health. 2012c. Guidance for Implementing High-Quality Multidisciplinary Meetings: Achieving best practice cancer care. Wellington: Ministry of Health.

National Breast Cancer Centre, Incorporating the Ovarian Cancer Programme. 2004. Clinical Practice Guidelines for the Management of Women with Epithelial Ovarian Cancer. Canberra: National Breast Cancer Centre.

NICE. 2010. Ovarian Cancer: The recognition and initial management of ovarian cancer. London: National Institute for Health and Clinical Excellence.

NZGG. 2009. Suspected Cancer in Primary Care: Guidelines for investigation, referral and reducing ethnic disparities. Wellington: New Zealand Guidelines Group.

Vernooij F. 2008. Ovarian Cancer Treatment in the Netherlands: The effect of care provider on the outcomes of treatment between 1996 and 2003. Thesis, Utrecht University.

Introduction

Expert Advisory Group on Cancer to the Chief Medical Officers of England and Wales. 1995. A Policy Framework for Commissioning Services. London: National Health Service.

Harris R, Cormack D, Tobias M, et al. 2012. Self-reported experience of racial discrimination and health care use in New Zealand: Results from the 2006/7 New Zealand Health Survey. American Journal of Public Health 102(5):1012–19.

Hill S, Sarfati D, Robson B, et al. 2013. Indigenous inequalities in cancer – what role for health care? ANZ Journal of Surgery 83: 36–41.

McLeod M, Cormack D, Harris R, et al. 2011. Achieving equitable outcomes for Māori women with cervical cancer in New Zealand: health provider views. New Zealand Medical Journal 124(1334): 52–62.

Ministry of Health. 2010a. Cancer: New Registrations and Deaths 2007. Wellington: Ministry of Health.

Minister of Health and Minister of Pacific Island Affairs. 2010. Ala Mo’ui: Pathways to Pacific Health and Wellbeing 2010–2014. Wellington: Ministry of Health.

Ministry for Social Development. 2010. Whānau Ora: Report of the Taskforce on Whānau Centred Initiatives. Wellington: Ministry for Social Development.

Ministry of Health. 2002. Reducing Inequalities in Health. 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.

Robson B, Harris R (eds). 2007. Hauora: Māori Standards of Health IV: A study of the years 2000–2005. Wellington: Te Rōpū Rangahau Hauora a Eru Pōmare.

Signal L, Martin J, Cram F, et al. 2008. The Health Equity Assessment Tool: A user’s guide. Wellington: Ministry of Health.

Soeberg M, Blakely T, Sarfati D, et al. 2012. Cancer Trends: Trends in survival by ethnic and socioeconomic group, New Zealand 1991–2004. Wellington: University of Otago and Ministry of Health.

Timely access to services

Buys SS, Partridge E, Black A, et al. 2011. Effect of screening on ovarian cancer mortality: the Prostate, Lung, Colorectal and Ovarian (PLCO) Cancer Screening Randomized Controlled Trial. Journal of the American Medical Association 305(22): 2295–303.

Cancer Australia. 2012. Clinical Practice Guidelines for the Treatment and Management of Endometrial Cancer. Canberra: Cancer Australia.

Canterbury District Health Board. 2009. HealthPathways. URL: www.canterburyinitiative.org.nz/HealthPathways.aspx.

Cohen P, Tan AL, Penman A. 2009. The multidisciplinary tumor conference in gynecologic oncology – does it alter management? International Journal of Gynecological Cancer 19(9): 1470–2.

Expert Advisory Group on Cancer to the Chief Medical Officers of England and Wales. 1995. A Policy Framework for Commissioning Services. London: National Health Service.

Farrell S, Roye C, Crane J, et al. 2008. Statement on wait times in obstetrics and gynaecology. Journal of Obstetrics and Gynaecology Canada 30(3): 248–70.

Hill S, Sarfati D, Blakely T. 2010. Ethnicity and management of colon cancer in New Zealand: do indigenous patients get a worse deal? Cancer 116(13): 3205–14.

Jacobs I, Oram D, Fairbanks J, et al. 1990. A risk of malignancy index incorporating CA 125, ultrasound and menopausal status for the accurate preoperative diagnosis of ovarian cancer. British Journal of Obstetric Gynaecology 97(10): 922–9.

Jones RW, Scurry J, Neill S, et al. 2008. Guidelines for the follow-up of women with vulvar lichen sclerosus in specialist clinics. American Journal of Obstetrics and Gynecology 198(5): 496.

Le T, Giede C, Salem S, et al. 2009. Initial evaluation and referral guidelines for management of pelvic/ovarian masses. Journal of Obstetrics and Gynaecology Canada 31(7): 668–80.

Ministry of Health. 2010d. Medical Oncology Prioritisation Criteria. www.nsfl.health.govt.nz/apps/nsfl.nsf/pagesmh/401 (accessed 6 August 2013).

Ministry of Health. 2012b. Faster Cancer Treatment Indicators: Data definitions and reporting for indicators. Wellington: Ministry of Health.

Ministry of Health. 2012d. Improving the System: Meeting the challenge – improving patient flow for electives. A Toolkit for District Health Boards. Wellington: Ministry of Health.

National Breast Cancer Centre, Incorporating the Ovarian Cancer Programme. 2004. Clinical Practice Guidelines for the Management of Women with Epithelial Ovarian Cancer. Canberra: National Breast Cancer Centre.

NCSP. 2008. Guidelines for Cervical Screening in New Zealand. Wellington: National Screening Unit.

Neill SM, Lewis FM, Tatnnall FM, et al. 2010. British Association of Dermatologists’ guidelines for the management of lichen sclerosus. British Journal of Dermatology 163(4): 672–82.

NICE. 2010. Ovarian Cancer: The recognition and initial management of ovarian cancer. London: National Institute for Health and Clinical Excellence.

NZGG. 1998. Guidelines for the Management of Heavy Menstrual Bleeding. Wellington: New Zealand Guidelines Group.

Scottish Cancer Group and NICE. 2009. Scottish Referral Guidelines for Suspected Cancer. Edinburgh: Scottish Cancer Group and National Institute for Health and Clinical Excellence.

Society of Obstetricians and Gynaecologists of Canada. 2008. Policy Statement. Journal of Obstetrics and Gynaecology Canada 30(3): 248–57.

Referral and communication

Ministry of Health. 2010c. Kōrero Marama: Health literacy and Māori. Wellington: Ministry of Health.

Ministry of Health. 2012e. Rauemi Atawhai: A guide to developing health education resources in New Zealand. Wellington: Ministry of Health.

NZGG. 2009. Suspected Cancer in Primary Care: Guidelines for investigation, referral and reducing ethnic disparities. Wellington: New Zealand Guidelines Group.

Investigation, diagnosis and staging

FIGO. 2012. FIGO Cancer Report. London: International Federation of Gynecology and Obstetrics.

NICE. 2005. Referral for Suspected Cancer. London: National Institute for Clinical Excellence.

NICE. 2010. Ovarian Cancer: The recognition and initial management of ovarian cancer. London: National Institute for Health and Clinical Excellence.

NZGG. 2009. Suspected Cancer in Primary Care: Guidelines for investigation, referral and reducing ethnic disparities. Wellington: New Zealand Guidelines Group.

Redman C, Duffy S, Bromham N, et al. 2011. Recognition and initial management of ovarian cancer: summary of NICE guidance. British Medical Journal 342: d2073.

Srigley JR, McGowan T, MacLean A, et al. 2009. Standardized synoptic cancer pathology reporting: a population-based approach. Journal of Surgical Oncology 99(8): 517–24.

Multidisciplinary care

Cohen P, Tan AL, Penman A. 2009. The multidisciplinary tumor conference in gynecologic oncology – does it alter management? International Journal of Gynecological Cancer 19(9): 1470–2.

FIGO. 2012. FIGO Cancer Report. London: International Federation of Gynecology and Obstetrics.

Ministry of Health. 2012c. Guidance for Implementing High-Quality Multidisciplinary Meetings: Achieving best practice cancer care. Wellington: Ministry of Health.

Ministry of Health. 2012e. Rauemi Atawhai: A guide to developing health education resources in New Zealand. Wellington: Ministry of Health.

Supportive care

Beasley VL. 2006. The experience of gynaecological cancer survivors: supportive care needs and use. PhD thesis, Queensland University of Technology.

Breslau ES, Rochester PW, Saslow D, et al. 2010. Developing partnerships to reduce disparities in cancer screening. Preventing Chronic Disease 7(3): A62.

Cumming G. 2008. From a generic to a gynaecological oncology clinical nurse specialist: an evolving role. Dissertation, Otago Polytechnic.

Health Outcomes International Ltd. 2011. An Implementation Plan for the Guidance for Improving Supportive Care for Adults with Cancer in New Zealand. Auckland: Health Outcomes International Ltd.

International Psycho-Oncology Society. (nd). Standards of Care News. URL: http://ipos-society.org/about/news/standards_news.aspx (accessed 13 August 2013).

Manne S, Rini C, Rubin S, et al. 2008. Long-Term Trajectories of Psychological Adaptation Among Women Diagnosed with Gynecological Cancers. Psychosomatic Medicine
70: 677–87.

Ministry of Health. 2005b. Access to Cancer Services for Māori. Wellington: Ministry of Health.

Ministry of Health. 2006. The National Travel Assistance Scheme: Your guide for claiming travel assistance: Brochure. URL: www.health.govt.nz/publication/national-travel-assistance-scheme-your-guide-claiming-travel-assistance-brochure (accessed 14 August 2013).

Ministry of Health. 2010b. Guidance for Improving Supportive Care for Adults with Cancer in New Zealand. Wellington: Ministry of Health.

PONZ and Cancer Society. 2013. National Standards for Supportive Care. Wellington: Psychosocial Oncology New Zealand and Cancer Society.

Walton LMS. 2011. Health and support needs of women living with gynaecologic cancer. PhD thesis, Auckland University.

Western Australia Cancer & Palliative Care Network. 2008. Gynaecologic Cancer Model of Care. Perth: Department of Health, State of Western Australia.

Care coordination

Aranda S, Yates P. 2009. A National Professional Development Framework for Cancer Nursing (2nd edition). Canberra: National Cancer Nursing Education Project (EdCaN), Cancer Australia.

Campbell C, Craig, J, Eggert J, et al. 2010. Implementing and measuring the impact of patient navigation at a comprehensive community cancer center. Oncology Nursing Forum 37(1): 61–8.

Cumming G. 2008. From a generic to a gynaecological oncology clinical nurse specialist: an evolving role. Dissertation, Otago Polytechnic.

NICE. 2004. Improving Supportive and Palliative Care for Adults with Cancer. London: National Institute for Clinical Excellence.

NHS. 1999. Guidance on Commissioning Cancer Services: Improving outcomes in gynaecological cancers. London: National Health Service.

Northern Cancer Network. 2011. Regional Cancer Care Coordination Model Project. Auckland: Northern Cancer Network.

Treatment

Alsop K, Fereday S, Meldrum C, et al. 2012. BRCA mutation frequency and patterns of treatment response in BRCA mutation-positive women with ovarian cancer: a report from the Australian Ovarian Cancer Study Group. Journal of Clinical Oncology 30(21): 2654–63.

Aranda S, Yates P. 2009. A National Professional Development Framework for Cancer Nursing (2nd edition). Canberra: National Cancer Nursing Education Project (EdCaN), Cancer Australia.

Campbell C, Craig, J, Eggert J, et al. 2010. Implementing and measuring the impact of patient navigation at a comprehensive community cancer centre. Oncology Nursing Forum 37(1): 61–8.

Cancer Australia. 2012. Clinical Practice Guidelines for the Treatment and Management of Endometrial Cancer. Canberra: Cancer Australia.

Covens AL, Dodge JE, Lacchetti C, et al. 2012. Surgical management of a suspicious adnexal mass: a systematic review. Gynecologic Oncology 126(1): 149–56.

Elattar A, Bryant A, Winter-Roach BA, et al. 2011. Optimal primary surgical treatment for advanced epithelial ovarian cancer. Cochrane Database of Systematic Reviews 10(8): CD007565.

Hacker NF, Leuchter RS, Berek JS, et al. 1981. Radical vulvectomy and bilateral inguinal lymphadenectomy through separate groin incisions. Obstetrics and Gynecology
58(5): 574–9.

Health Outcomes International Ltd. 2011. An Implementation Plan for the Guidance for Improving Supportive Care for Adults with Cancer in New Zealand. Auckland: Health Outcomes International Ltd.

Hospice New Zealand. 2012. Hospice New Zealand Standards for palliative care – Quality Review Programme and Guide. Wellington: Hospice New Zealand.

Kauff ND, Barakat RR. 2007. Risk-reducing salpingo-oophorectomy in patients with germline mutations in BRCA1 or BRCA2. Journal of Clinical Oncology 25(20): 2921–7.

Kelley 3rd JL, Burke TW, Tornos C. 1992. Minimally invasive vulvar carcinoma: an indication for conservative surgical therapy. Gynecologic Oncology 44(3): 240–4.

Kong A, Johnson N, Kitchener HC, et al. 2012. Adjuvant radiotherapy for stage I endometrial cancer: an updated Cochrane systematic review and meta-analysis. Journal of the National Cancer Institute 104(21): 1625–34.

Landrum LM, Lanneau GS, Skaggs VJ, et al. 2007. Gynecologic Oncology Group risk groups for vulvar carcinoma: improvement in survival in the modern era. Gynecologic Oncology 106(3): 521–5.

Milliken DA, Shepherd JH. 2008. Fertility preserving surgery for carcinoma of the cervix. Current Opinion in Oncology 20(5): 575–80.

Ministry of Health. 2001. The New Zealand Palliative Care Strategy. Wellington: Ministry of Health.

Monk BJ, Disaia PJ. 2005. What is the role of conservative primary surgical management of epithelial ovarian cancer: the United States experience and debate. International Journal of Gynaecological Cancer 15(Suppl 3): 199–205.

National Breast Cancer Centre, Incorporating the Ovarian Cancer Programme. 2004. Clinical Practice Guidelines for the Management of Women with Epithelial Ovarian Cancer. Canberra: National Breast Cancer Centre.

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Palliative Care Australia. 2005. Standards for providing quality palliative care for all Australians (4th edition). Canberra: Palliative Care Australia.

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Follow-up and surveillance

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Appendices

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

See ‘Institutional requirements and definitions’ below for definitions of centres and units.

The Gynaecological Cancer Tumour Standards Working Group recommends that ‘high suspicion of gynaecological cancer’ be defined to include (but not to be restricted to) women with:

a macroscopic abnormality suspicious of a vulval, vaginal or cervical cancer

significant symptoms including abnormal vaginal bleeding, discharge or pelvic pain and abnormal clinical examination findings consistent with gynaecological malignancy

a cervical or vaginal smear suspicious of malignancy

postmenopausal bleeding and an endometrial thickness of greater than 5 mm (unless with a recent normal endometrial biopsy)

biopsy-proven atypical endometrial hyperplasia

a complex ovarian mass, with radiological suspicion of ovarian malignancy, ascites or metastatic disease

a complex ovarian mass and raised CA125 (an RMI >200): see Jacob’s Risk of Malignancy Index (Jacobs et al 1990; NICE 2010 (Appendix D); Society of Obstetricians and Gynaecologists of Canada 2008).

a large complex ovarian mass (>8 cm)

evidence of a rapidly growing pelvic mass (uterine or ovarian).

A pathologist with a subspecialty interest in gynaecological pathology.

Where this has been published by the Royal College of Pathologists of Australasia.

A Green Prescription (GRx) is a health professional’s written advice to a patient to be physically active, as part of the patient’s health management.

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Standards of Service Provision for Gynaecological Cancer Patients in New Zealand – Provisional

Standards of Service Provision for Gynaecological Cancer Patients in New Zealand – Provisional

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