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

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

National Bowel Cancer Tumour Standards Working Group

2013

Citation: National Bowel Cancer Tumour Standards Working Group. 2013. Standards of Service Provision for Bowel 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 978-0-478-41537-7 (online)
HP 5740

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 _Toc369803169 \h 1

Background PAGEREF _Toc369803170 \h 1

Objective PAGEREF _Toc369803171 \h 1

How the bowel cancer service standards were developed PAGEREF _Toc369803172 \h 2

Equity and Whānau Ora PAGEREF _Toc369803173 \h 2

Summary of the clinical standards for the management of bowel cancer services PAGEREF _Toc369803174 \h 4

Format of the standards PAGEREF _Toc369803175 \h 5

Standards of service provision pathway PAGEREF _Toc369803176 \h 5

Summary of standards PAGEREF _Toc369803177 \h 6

1 Timely Access to Services PAGEREF _Toc369803178 \h 9

Rationale PAGEREF _Toc369803179 \h 9

Monitoring requirements PAGEREF _Toc369803180 \h 10

2 Referral and Communication PAGEREF _Toc369803181 \h 11

Rationale PAGEREF _Toc369803182 \h 11

Good practice points PAGEREF _Toc369803183 \h 12

Monitoring requirements PAGEREF _Toc369803184 \h 12

3 Investigation, Diagnosis and Staging PAGEREF _Toc369803185 \h 13

Rationale PAGEREF _Toc369803186 \h 13

Good practice points PAGEREF _Toc369803187 \h 13

Monitoring requirements PAGEREF _Toc369803188 \h 15

4 Multidisciplinary Care PAGEREF _Toc369803189 \h 16

Rationale PAGEREF _Toc369803190 \h 16

Good practice points PAGEREF _Toc369803191 \h 17

5 Supportive Care PAGEREF _Toc369803192 \h 19

Rationale PAGEREF _Toc369803193 \h 19

Good practice points PAGEREF _Toc369803194 \h 19

Monitoring requirements PAGEREF _Toc369803195 \h 20

6 Care Coordination PAGEREF _Toc369803196 \h 21

Rationale PAGEREF _Toc369803197 \h 21

Good practice points PAGEREF _Toc369803198 \h 21

Monitoring requirements PAGEREF _Toc369803199 \h 22

7 Treatment PAGEREF _Toc369803200 \h 23

Rationale PAGEREF _Toc369803201 \h 23

Good practice points PAGEREF _Toc369803202 \h 23

Monitoring requirements PAGEREF _Toc369803203 \h 24

Treatment – chemotherapy PAGEREF _Toc369803204 \h 25

Rationale PAGEREF _Toc369803205 \h 25

Good practice points PAGEREF _Toc369803206 \h 26

Monitoring requirements PAGEREF _Toc369803207 \h 26

Treatment – radiotherapy PAGEREF _Toc369803208 \h 27

Rationale PAGEREF _Toc369803209 \h 27

Good practice points PAGEREF _Toc369803210 \h 27

Monitoring requirements PAGEREF _Toc369803211 \h 27

Treatment – palliative care PAGEREF _Toc369803212 \h 28

Rationale PAGEREF _Toc369803213 \h 28

Good practice points PAGEREF _Toc369803214 \h 29

Monitoring requirements PAGEREF _Toc369803215 \h 29

8 Follow-up and Surveillance PAGEREF _Toc369803216 \h 30

Rationale PAGEREF _Toc369803217 \h 30

Good practice points PAGEREF _Toc369803218 \h 30

Monitoring requirements PAGEREF _Toc369803219 \h 31

9 Clinical Performance Monitoring and Research PAGEREF _Toc369803220 \h 32

Rationale PAGEREF _Toc369803221 \h 32

Good practice points PAGEREF _Toc369803222 \h 32

Monitoring requirements PAGEREF _Toc369803223 \h 33

Appendices

Appendix 1: National Bowel Cancer Tumour Standards Working Group Membership PAGEREF _Toc369803224 \h 34

Appendix 2: Glossary PAGEREF _Toc369803225 \h 35

Appendix 3: The Colorectal Cancer Patient Pathway PAGEREF _Toc369803226 \h 40

Appendix 4: Suggested Stratification of Risk of Local Recurrence for Rectal Tumours as Predicted by MRI PAGEREF _Toc369803227 \h 41

Appendix 5: Colorectal Pathology Report Format PAGEREF _Toc369803228 \h 42

Appendix 6: References PAGEREF _Toc369803229 \h 44

List of Figures

TOC \t “Figure,3” Figure 1: Multiple small steps toward inequity PAGEREF _Toc369768831 \h 25

Introduction

Background

Bowel cancer is a major health issue for New Zealand. The latest figures show that in 2009 it was the second most common cancer in both men and women (Ministry of Health 2012a), the second highest cause of cancer death for men (after lung cancer) and the third highest for women (after lung and breast) (Ministry of Health 2012a). Bowel cancer is also the second most common cause of death from cancer for Māori (Ministry of Health 2012a). New Zealand has one of the highest death rates from this cancer in the developed world; there were 2837 new cases and 1244 deaths in 2008 (Ministry of Health 2012a).

Bowel cancer incidence increases with age; 90 percent of cases occur in those over the age of 50 (NZGG 2004). The population in New Zealand, as in other developed countries, is ageing due to lower fertility and mortality rates (Statistics New Zealand 2006). The number of new cases of bowel cancer each year is therefore projected to increase, by 15 percent for men and 19 percent for women to 3302 by 2016 (Ministry of Health 2002a, 2011a). At the same time, age-standardised registration and mortality rates for bowel cancer are declining, meaning that at an individual level risk is decreasing (Ministry of Health 2010a). However, among Māori, bowel cancer diagnoses rates are increasing; the fastest rate of increase is among Māori males (Ministry of Health 2010a).

Regional inequities in deaths from bowel cancer are known to exist (Ministry of Health 2005). However, due to the lack of nationally collected and reported data, the reasons for these differences are not clear. They could include regional inequities in access to and quality of care, and/or differences in risk and protective factors by region.

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 tool, the standards will promote nationally coordinated and consistent standards of service provision across New Zealand.

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 bowel cancer service standards were developed

Tumour-specific national standards were first developed for lung cancer in the Standards of Service Provision for Lung Cancer Patients in New Zealand (National Lung Cancer Working Group 2011); these standards have already been used by DHBs to inform improvements to service delivery and clinical practice.

Subsequently provisional standards have been developed for an additional ten tumour types: bowel, breast, gynaecological, lymphoma, melanoma, myeloma, head and neck, sarcoma, thyroid and upper gastrointestinal.

The Ministry of Health required all tumour standard working groups to:

Maintain a focus on achieving equity and whānau ora when developing service standards, patient pathways and service frameworks by ensuring an alignment with the Reducing Inequalities in Health Framework and its principles (Ministry of Health 2002b).

These standards broadly follow the format of the Standards of Service Provision for Lung Cancer Patients in New Zealand. Their scope is adult patients with bowel cancer.

These standards recognise the need for evidence-based practice. Numerous evidence-based guidelines and standards already exist, so the standards in this document have largely been developed by referring to established national and international guidelines in the bowel tumour stream.

In preparing these standards, the National Bowel Tumour Standards Working Group had access to expert advisors, including Māori and consumer health experts. Wider consultation has taken place with key sector stakeholders and relevant professional organisations.

Equity and Whānau Ora

In alignment with the Reducing Inequalities in Health Framework and its principles (Ministry of Health 2002b), a focus on equity and Whānau Ora was maintained.

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 (Ministry of Health 2008).

The nine-year life expectancy gap between Māori and non-Māori is an ongoing challenge for the health sector as a whole (Ministry of Health 2010c). Cancer is an important contributor to this inequity (Blakely et al 2011).

Addressing health inequalities requires a population health approach, involving both direct action from health and disability services and intersectoral action addressing the social and economic determinants of health (Ministry of Health 2002b).

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. There is specific evidence to show that Māori patients have poorer access to and a lower quality of health care, and that Māori cancer survival rates tend to be lower than non-Māori rates (Hill et al 2012).

Māori have a lower incidence of bowel cancer than non-Māori (Blakely et al 2010; Robson et al 2010), but a poorer stage-related survival. Māori patients have about a 30 percent higher risk of dying from bowel cancer than non-Māori patients (RR 1.33, 95% CI 1.03–1.71) (Hill et al 2010b).

The fact that bowel cancer is generally diagnosed at a later stage among Māori does not explain survival inequity between Māori and non-Māori. Researchers have found that Māori receive lower access to and quality of bowel cancer treatment than non-Māori; most of the survival disparity between Māori and non-Māori patients is accounted for by higher rates of pre-existing medical conditions, more limited health service access and lower rates of treatment (Hill et al 2012).

A recent study (Hill et al 2010a) found that, after adjusting for patient comorbidity and tumour characteristics, Māori patients with stage III disease were significantly less likely to be offered (RR 0.8, 95% CI 0.65–0.98) or to receive (RR 0.71, 95% CI 0.53–0.96) adjuvant chemotherapy. When they did receive this, Māori patients were more likely to experience delay; over 50 percent waited eight weeks or more to start chemotherapy, compared with 25 percent of non-Māori patients (RR 2.02, 95% CI 1.10–3.71). The study found no evidence of ethnic differences in patient preferences for treatment.

Such small inequities, which occur at multiple points along the bowel cancer treatment pathway, culminate in large survival inequities.

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 bowel 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.

Good practice points include health literacy training and cultural competency for all health professionals involved in patient care.

Ethnicity data will be collected on mortality, morbidity and disability.

Surveillance and follow-up data will be audited by ethnicity.

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

Institutional requirements

In order to meet the standards set out in this document, DHBs will need to have access to the following appropriately credentialed staff:

a surgeon with specific training and experience in colorectal surgery and with a sufficient caseload to maintain his/her surgical skills to perform elective surgery for colon and rectal cancer

access to appropriate high quality support of critically ill patients

medical oncologists and chemotherapy-certificated oncology nurses to prescribe, administer and monitor chemotherapy

radiation oncologists to prescribe and supervise radiotherapy

an appropriately qualified pathologist to supervise or assess gross specimens and perform microscopic examination (where a pathologist does not have specific expertise in handling colorectal specimens, s/he should have ready access to a pathologist with experience in colorectal pathology)

an appropriately qualified radiologist to carry out diagnostic investigations and interpret and report results

appropriately trained nursing and allied health professionals to support the patient pathway

administration/data and quality personnel to support information requirements.

District Health Boards will also need access to appropriate infrastructure.

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

Standards of service provision pathway

The bowel cancer standards are reflected in the following pathway.

SHAPE  \* MERGEFORMAT

Summary of standards

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

timely access to services

referral and communication

investigation, diagnosis and staging

multidisciplinary care

supportive care

care coordination

treatment

follow-up and surveillance

clinical performance monitoring and research.

The standards are as follows.

1 Timely access to services

Standard 1: Patients referred urgently with a high suspicion of cancer have their first specialist assessment (FSA) or colonoscopy within 14 days.

Standard 2: Patients with a confirmed diagnosis of bowel cancer receive their first treatment within 31 days of the decision to treat.

Standard 3: Patients needing radiotherapy or chemotherapy receive their first treatment within four weeks of the decision to treat.

Standard 4: Patients referred urgently with a high suspicion of bowel cancer receive their first cancer treatment within 62 days.

2 Referral and communication

Standard 5: Patients with suspected bowel cancer are referred to secondary or tertiary care following an agreed referral pathway.

Standard 6: Patients are provided with verbal and written information and general practitioners (GPs) with written information about bowel cancer, diagnostic procedures, treatment options (including effectiveness and risks), final treatment plans and support services.

Standard 7: Communications between health care providers include the patient’s name, date of birth, national health index (NHI) number, ethnicity and contact details, and are ideally electronic.

3 Investigation, diagnosis and staging

Standard 8: The histology of excised bowel cancer specimens is recorded in a synoptic format.

Standard 9: All patients are staged by a computed tomographic scanning (CT scan) of the abdomen and pelvis. A chest X-ray or chest CT scan is also required.

Standard 10: All patients with rectal cancer are staged using magnetic resonance imaging (MRI) of the pelvis, to determine radiologic staging.

4 Multidisciplinary care

Standard 11: Patients with non-metastatic colon cancer are presented in the bowel cancer multidisciplinary meeting (MDM) within three weeks after surgery for consideration of adjuvant therapy.

Standard 12: All patients with non-metastatic rectal cancer or a new diagnosis of metastatic colorectal cancer have their treatment plan discussed at a bowel cancer MDM; recommendations are clearly documented in the patient’s medical records and communicated to the patient and their GP.

Standard 13: Multidisciplinary meetings identify patients at high risk of receiving inequitable care, and auditable data on these patients is collected from them along their cancer journey.

5 Supportive care

Standard 14: Patients with bowel 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 Care coordination

Standard 15: Patients with bowel cancer have access to a bowel cancer clinical nurse specialist or other health professional who is a member of the MDM to help coordinate all aspects of their care.

7 Treatment

Standard 16: Risk-adjusted 30-day post-operative mortality for patients with bowel cancer is reported.

Standard 17: Patients’ adjuvant post-operative chemotherapy starts within four weeks of surgical resection.

Standard 18: Auditable data on reasons for non-referral to adjuvant therapy are recorded for all patients not referred to adjuvant therapy.

Standard 19: Patients with rectal cancer receiving long-course radiotherapy (preoperative or post-operative) are offered concurrent chemotherapy.

Standard 20: 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.

8 Follow-up and surveillance

Standard 21: Follow-up plans include clinical review by appropriate members of the multidisciplinary team (MDT), working in conjunction with patients, their family/whānau and their GP.

9 Clinical performance monitoring and research

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

Standard 23: Patients with bowel cancer are offered the opportunity to participate in research projects and clinical trials where they are available.

1 Timely Access to Services

Standard 1

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

Standard 2

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

Standard 3

Patients needing radiotherapy or chemotherapy receive their first treatment within four weeks of the decision to treat.

Standard 4

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

Rationale

Timely and equitable access to quality cancer management is important to support good health outcomes for New Zealanders and to reduce inequities.

Key components of successful cancer management include early recognition and reporting of symptoms, expertise in identifying patients requiring prompt referral and rapid access to investigations and treatment.

A suspicion of cancer or cancer diagnosis is very stressful for patients and family/whānau. It is important that patients, family/whānau and GPs know how quickly patients can receive treatment. Long waiting times may affect local control and survival benefit for some cancer patients, and can result in delayed symptom management for palliative patients.

The standards in this cluster ensure that:

patients receive quality clinical care

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

delays are avoided as far as possible

service providers can monitor inequities in timeliness.

Shorter waits for cancer treatments is a government health target. The FCT indicators (Standards 1–3) adopt a timed patient pathway approach across surgical and non-surgical cancer treatment, and apply to inpatients, outpatients and day patients.

Monitoring requirements

MR1A

Track FCT indicators.

MR1B

Collect and analyse ethnicity data on all access targets and indicators.

MR1C

Report to the Ministry of Health on a monthly basis the proportion of patients who meet the waiting targets for urgent, routine and surveillance outpatient colonoscopy.

MR1D

Meet Ministry of Health diagnostic wait time indicators for colonoscopy.

MR1E

Meet Ministry of Health medical imaging indicators.

2 Referral and Communication

Standard 5

Patients with suspected bowel cancer are referred to secondary or tertiary care following an agreed referral pathway.

Standard 6

Patients are provided with verbal and written information and GPs with written information about bowel cancer, diagnostic procedures, treatment options (including effectiveness and risks), final treatment plans and support services.

Standard 7

Communications between health care providers include the patient’s name, date of birth, NHI number, ethnicity and contact details, and are ideally electronic.

Rationale

There are often multiple access points for patients with suspected bowel cancer who are moved from primary to secondary care. These may include endoscopy services, radiology services and medical or surgical FSAs in the outpatient department for elective presentations of suspected bowel cancer.

Emergency presentations for bowel cancer are usually seen in the emergency department. Non-emergency presentations for bowel cancer may occur if there are not clear pathways for outpatient assessment or investigation of suspected bowel cancer; particularly if timely access to outpatient services is not expected.

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

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

Communications with other health care professionals

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

Good practice points

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

2.2 GP referral communication includes a detailed description of disease-specific symptoms, associated symptoms and family history of bowel cancer, as well as relevant physical signs, including the finding of a digital rectal examination.

2.3 The referral includes a list of patient comorbidities and medications, and attaches results of a recently obtained complete blood count, relevant recent biochemical tests and any prior investigations of the colon or rectum.

2.4 For patients at risk of inequitable outcomes, detailed information on patient clinical, mental health and social risk factors is documented.

2.5 Referrals are triaged in a timely manner by an appropriately trained person (nursing specialist or doctor), and are consistent with local and national prioritisation criteria.

2.6 DHBs ensure the National Referral Criteria for Direct Access Outpatient Colonoscopy and CT colonography is readily accessible to non-gastrointestinal specialists, GPs and consumers.

2.7 GPs and referrers receive results of specialist investigations and assessments within five working days of the specialist appointment or after results are available.

2.8 Colorectal cancer services have a did-not-attend (DNA) reduction and follow-up policy that entails equity-focused quality assurance. The incidence of DNAs and DNA follow-up processes are monitored and reported by ethnicity.

2.9 All organisations involved in cancer care provide access to health literacy training for clinicians.

Monitoring requirements

MR2A

Ensure that communication between the referrer and the GP occurs within five working days for the following:

results of endoscopic examinations (according to the guidelines in the National Endoscopy Quality Improvement Programme)

specialist radiological examinations

operative procedures

MDM discussion outcomes.

MR2B

Provide evidence of clear and accessible referral pathways.

MR2C

Audit actual patient pathways through records of registrations of referral, FSAs, dates of diagnosis and first cancer treatments.

MR2D

Audit correspondence between secondary/tertiary care and GPs.

MR2E

Provide evidence of culturally appropriate patient and family/whānau satisfaction surveys, and audit complaints processes.

3 Investigation, Diagnosis and Staging

Standard 8

The histology of excised bowel cancer specimens is recorded in a synoptic format.

Standard 9

All patients are staged by CT scan of the abdomen and pelvis. A chest X-ray or chest CT scan is also required.

Standard 10

All patients with rectal cancer are staged using MRI of the pelvis, to determine radiologic staging.

Rationale

Staging disease by CT scanning is necessary to plan types and timeframes of therapy.

Prior determination of the circumferential margin of a rectal cancer by MRI scanning is necessary to determine treatment modalities and the sequence of therapy.

In patients aged 50 years and under, or in those where a familial syndrome is suspected, immunohistochemical determination of loss of expression for the four mismatch repair proteins in the biopsy material may influence the extent of colonic resection when surgical removal of the index cancer is undertaken.

Synoptic reporting in pathology is considered best practice to assist clinicians in obtaining information to make treatment decisions and provide prognostic information.

As the total number of lymph nodes evaluated at the time of resection has been associated with survival, lymph node examinations should be as complete as possible.

Good practice points

3.1 Where possible, the diagnosis of bowel cancer is confirmed before treatment is planned and undertaken.

3.2 The presence of metachronous lesions or otherwise is established first, to plan the extent of colonic resection, and to alert clinicians to the possibility of a familial syndrome.

3.3 All patients receive a colonoscopy for diagnostic purposes, including biopsy of the index lesion, documentation of synchronous lesions and polypectomy for synchronous polyps and tumours where indicated.

3.4 Colorectal cancer resection specimens are handled as outlined in the current Royal College of Pathologists of Australasia Colorectal Cancer Structured Reporting Protocol (currently RCPA 2012).

3.5 DHBs ensure patients who meet the national criteria for open-access outpatient colonoscopy are able to receive it.

3.6 GPs and non-gastrointestinal specialists refer patients who are fit for outpatient colonoscopy and fulfil the national criteria directly to an endoscopy unit.

3.7 GPs advise patients that more than one investigation may be necessary to confirm or exclude a diagnosis of bowel cancer.

3.8 Services offer colonoscopy to patients without major comorbidities to confirm a diagnosis of bowel cancer. If a lesion suspicious of cancer is detected, a biopsy is performed to obtain histological proof of diagnosis, unless it is contraindicated (eg, in patients with a blood-clotting disorder).

3.9 CT colonography is considered as an alternative to colonoscopy if the local radiology service can demonstrate competency in this technique. If a lesion suspicious of cancer is detected on CT colonography, a colonoscopy with biopsy is offered to confirm the diagnosis, unless it is contraindicated.

3.10 CT colonography is considered as an alternative for patients with comorbidities affecting their suitability for colonoscopy, the unavailability of biopsy tissue notwithstanding. (Major comorbidities include patients on warfarin or warfarin-like drugs and patients who are too frail to tolerate cathartic bowel preparation.) Double contrast barium enemas have been largely superseded and are not recommended except where CT colonography is unavailable.

3.11 Service provision integrates the principles established by the National Endoscopy Quality Improvement Programme, an important quality initiative that focuses on improving the quality of endoscopy services. This includes matters of capacity, demand and efficiency, as well as the procedure itself.

3.12 Where surgical management is required, patients receive complete imaging of the large bowel either via CT colonography or repeat colonoscopy.

3.13 Where there is a large bowel obstruction, a CT scan is performed preoperatively.

3.14 Full colonoscopy is undertaken within 12 months following surgery for patients where a colonoscopy is not possible due to an obstructing carcinoma or, where the presentation is acute, before colonoscopy can be undertaken (with the exception of patients with defunctioning stomas).

3.15 The use of endo-rectal ultrasound is optional for radiologic staging of rectal cancer, but is inadequate for determining circumferential margins.

3.16 Positron emission tomography and CT scanning (PET-CT) is reserved for patients where there is diagnostic uncertainty about likely recurrent or potentially resectable metastatic disease.

3.17 Appropriate tests to evaluate patients with comorbidities affecting their fitness for surgery are undertaken on a selective basis.

3.18 Service record results of full blood counts, renal function tests, electrolyte tests, liver function tests and ferritin and carcino-embryonic antigen (CEA) measurements for all patients following a diagnosis of bowel cancer.

3.19 In patients aged 50 years or under, or who meet the Bethesda criteria (Lipton et al 2004), immunohistochemical determination of mismatch repair protein expression (MLH1, MSH2, MSH6 and PMS2) is reported on the biopsy specimen. When appropriate, patients are referred to the New Zealand Familial Gastrointestinal Cancer Service.

3.20 Pathologists closely supervise trainee pathology registrars or pathology assistants performing gross assessment and block selection.

3.21 Services carry out specimen photography, particularly for rectal resections and especially if the specimen has been processed grossly by a pathology assistant or pathology registrar. This will assist in assessing the quality of mesorectal excision and correlation with radiology.

3.22 Tissue banking may be appropriate in some instances where it is helpful for an individual patient.

Monitoring requirements

MR3A

Record the percentage of patients with rectal cancer who receive MRI of the pelvis to determine radiologic staging.

MR3B

Record the percentage of patients who receive staging by CT scan of the abdomen and pelvis.

MR3C

Record the percentage of patients who receive a chest X-ray or chest CT scan.

MR3D

Ensure that MDMs provide records of all patient staging prior to treatment.

MR3E

Ensure that pathology departments keep a register of synoptic reports.

4 Multidisciplinary Care

Standard 11

Patients with non-metastatic colon cancer are presented in the bowel cancer MDM within three weeks after surgery for consideration of adjuvant therapy.

Standard 12

All patients with non-metastatic rectal cancer or a new diagnosis of metastatic colorectal cancer have their treatment plan discussed at a bowel cancer MDM; recommendations are clearly documented in the patient’s medical records and communicated to the patient and their GP.

Standard 13

MDMs identify patients at high risk of receiving inequitable care, and auditable data on these patients is collected from them along their cancer journey.

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 shows that Māori with stage III bowel cancer and comorbidities are at high risk of receiving inequitable bowel cancer care (Hill et al 2010a). Services need to audit the care pathway to ensure that those at high risk of inequities receive quality care.

Regarding MDM membership, the New Zealand Guidelines Group (NZGG) guideline on management of early colorectal cancer (NZGG 2011b) recommends the following.

‘Every health practitioner involved in colorectal cancer care should actively participate in a multidisciplinary team.’

‘All people with colon cancer should be discussed at a Tumour Board meeting.’

‘All people with rectal cancer should be discussed at a Tumour Board meeting.’

Good practice points

MDM membership

4.1 Minimum core membership of a bowel cancer MDM consists of two surgeons, a medical and radiation oncologist, a radiologist, a pathologist, an expert colonoscopist, a colorectal clinical nurse specialist, an appropriate allied health professional and an MDM coordinator. A palliative care team member (specialist or nurse) should be included where appropriate.

4.2 Each MDM keeps an attendance register and reviews core membership annually to ensure members have sufficient scope in their job to adequately contribute to their roles.

4.3 MDM outcome forms record which members of the team were present for each case the MDM discussed.

4.4 If a core member is the sole representative of a specialty and is unable to attend an MDM, a deputy attends in their place.

Case discussion

4.5 A patient’s MDM notes document whether the patient is potentially eligible for clinical trials.

4.6 MDMs review patients with apparently isolated colorectal metastases to determine their eligibility for further surgery by an MDM with the relevant expertise (eg, hepatobilary or thoracic).

4.7 MDMs consider preoperative or post-operative adjuvant radiotherapy for all patients with rectal cancer (NZGG 2011b).

4.8 MDMs document distance to the circumferential margin in all cases of rectal cancer. Post-operatively, the same rectal cancer MDM that determined the preoperative therapy discusses those patients with a histologically involved (<2 mm) circumferential margin.

4.9 For patients in whom rectal cancer recurs locally, the same MDM that determined the preoperative therapy discusses the case post-operatively.

4.10 MDMs discuss and record comorbidities.

4.11 MDMs record family history of bowel cancer.

4.12 Public hospital MDMs may discuss private and public patients.

Monitoring requirements

MR4A

Report on the number of patients newly diagnosed with bowel cancer, or newly diagnosed with a local recurrence or metastatic bowel cancer, who have been discussed in an MDM. Report numbers of patients with rectal cancer and a circumferential margin of <2 mm annually, as a proportion of all rectal cancer diagnoses.

MR4B

Ensure that MDMs audit patients registered at MDMs.

MR4C

Ensure that MDMs audit patients at a high risk of receiving inequitable care along their cancer journey.

MR4D

Ensure that MDMs audit treatment recommendations and following communications.

5 Supportive Care

Standard 14

Patients with bowel cancer and their family/whānau have equitable and coordinated care 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 perform an important role in providing supportive care.

Good practice points

5.1 Patients who require stomas – whether temporary or permanent – are counselled on the position and implications of a stoma before undergoing surgery. Ideally, this is given by a nurse with appropriate expertise (eg, a colorectal cancer nurse or stomal therapy nurse).

5.2 All people affected by cancer and their family/whānau have equitable access to timely and quality supportive care services.

5.3 Each new cancer patient is offered written information in a plain language format that is individually tailored to that patient, covering:

general background information about bowel cancer

treatment options: specific local arrangements, including information about the MDT and support services, and whom the patient should contact if necessary

local self-help/support groups and other appropriate organisations.

5.4 Clinicians discuss the risks of the complications of radical treatment with patients prior to treatment.

5.5 Patients are encouraged to bring a support person with them to all appointments.

5.6 The supportive care and psychosocial needs of all patients are addressed through validated tools, and documented at each stage of the cancer journey.

5.7 Patients have access to services appropriate to their needs. A regional transport and financial support programme is offered to all patients.

5.8 A professionally trained interpreter is available at medical appointments for those who do not speak English as their first language.

5.9 Patients with bowel cancer who fulfil the Amsterdam criteria (Lipton et al 2004) (ie, are aged 50 years or younger, have a strong family history of bowel cancer, have synchronous cancers or have multiple polyps) are considered for referral to the New Zealand Familial Gastrointestinal Cancer Service for assessment and counselling.

5.10 Patients undergoing surgical removal of tissue are offered access to appropriate guardianship and disposal of their tissue within culturally appropriate protocols.

Monitoring requirements

MR5A

Record the percentage of patients with bowel cancer advised by the MDM to travel to a specialised cancer service who were offered financial support according to the Ministry of Health’s travel policy.

MR5B

Record the percentage of patients with bowel cancer who are able to access publicly funded referral to extended allied health services.

6 Care Coordination

Standard 15

Patients with bowel cancer have access to a bowel cancer clinical nurse specialist or other health professional who is a member of the MDM to help coordinate all aspects of their care.

Rationale

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

‘Care 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 bowel cancer journey.

Good practice points

6.1 All patients with bowel cancer have a nominated single point of contact – ideally a nurse or allied health professional with an in-depth/specialist knowledge of bowel cancer – to support them to access psychosocial support and information and provide coordination of their cancer journey.

6.2 Services provide all patients with this person’s name and contact details, and the care coordinator makes initial contact with the patient within seven days of the initial diagnosis.

6.3 All patients have access to a nurse specialist before and after treatment to assist with education, support, management of treatment side-effects and issues with sexual function.

6.4 All regional cancer centres employ a colorectal cancer nurse specialist.

Monitoring requirements

MR6A

Record the number of regional cancer centres that employ a colorectal cancer nurse specialist.

MR6B

Ensure that MDMs provide records of identified care coordinators.

MR6C

Audit database records and clinical notes on contact points between care coordinators and patients.

MR6D

Provide evidence of culturally appropriate patient and family/whānau satisfaction surveys, and audit complaints processes.

7 Treatment

Standard 16

Risk-adjusted 30-day post-operative mortality for patients with bowel cancer is reported.

Rationale

Systematic reviews report improved post-operative mortality in high-volume hospitals in patients with colon cancer. One recent review also reported increased overall survival (Archampong et al 2012). Systematic reviews also report improved post-operative mortality in colon cancer patients treated by high-volume surgeons.

The oncologic safety of laparoscopic assisted colectomy for colon adenocarcinoma after three and five years of follow-up has now been demonstrated. Pooled data from large multi-centre and smaller single-centre trials demonstrate that the modality conveys some significant short-term benefits as compared with open surgery.

Multiple systematic reviews have demonstrated that enhancing protocols for recovery after colorectal surgery has reduced post-operative morbidity and the length of hospital stays.

The surgical management of emergency presentation of bowel cancer is known to have high morbidity and mortality, especially in patients with metastatic disease. Endoscopically placed stents in experienced hands now have a well-established role in managing large bowel obstruction, particularly in high-risk surgical patients.

Good practice points

Elective colorectal cancer resection

7.1 Hospital credentialing committees specifically credential their surgeons to perform:

open and/or laparoscopic colon cancer surgery

open and/or laparoscopic rectal cancer surgery.

7.2 Services undertake and review adequate surgery, including en bloc lymphovascular dissection (12 or more lymph nodes).

7.3 Resection of involved adjacent organs is performed en bloc.

7.4 Services consider enhanced recovery protocols after colorectal surgery.

Acute large bowel obstructions

7.5 Patients presenting for emergency surgery with obstructing mid- and low rectal cancer are resuscitated, defunctioned, staged and referred to a surgeon with colorectal expertise.

7.6 Colonic stenting for palliation of left-sided bowel obstruction in patients with bowel cancer is carried out, if endoscopic expertise can be readily accessed (NZGG 2011b).

7.7 Colonic stenting as a bridge to surgery for left-sided bowel obstruction in patients with bowel cancer is considered, if endoscopic expertise can be readily accessed (NZGG 2011b).

7.8 Patients with bowel cancer who have bowel obstruction and are being considered for colonic stenting are invited to participate in randomised controlled trials, where available (NZGG 2011b).

7.9 Contrast enema studies are not used as the only imaging modality in patients presenting with acute large bowel obstruction (NICE 2011).

7.10 Consultant surgeons consider inserting a colonic stent in patients presenting with acute left-sided complete or near-complete large bowel obstruction, especially where there is metastatic disease. The stent is placed by an endoscopist experienced in using colonic stents, within 24 hours. Complications rates are audited.

Rectal surgery

7.11 The principles of extrafascial dissection and total mesorectal excision are followed for all rectal cancers.

7.12 Where technically feasible, a colonic reservoir is used for anastomosis within two centimetres of the anorectal junction.

7.13 Adequate distal clearance for mid- to low rectal tumours is 2 cm.

7.14 Adequate distal clearance for upper rectal tumours is 5 cm.

7.15 Sphincter-saving operations are offered to patients with rectal cancer, except in the presence of:

tumours for which adequate distal clearance (>2 cm) cannot be achieved

a sphincter mechanism that is not adequate for continence

poor access to the pelvis that makes restoration technically impossible (this is rare).

Monitoring requirements

MR7A

Collect quality control data for the surgical management of colon and rectal cancer, including on 30-day mortality and unplanned return to theatre.

MR7B

Audit records of proposed plans of care, onward referrals and follow-up responsibilities recorded at MDT reviews and in patients’ notes.

Treatment – chemotherapy

Standard 17

Patients’ adjuvant post-operative chemotherapy starts within four weeks of surgical resection.

Standard 18

Auditable data on reasons for non-referral to adjuvant therapy are recorded for all patients not referred to adjuvant therapy.

Rationale

Patients with stage I bowel cancer do not benefit from adjuvant chemotherapy, and do not need to be routinely seen by a medical oncologist (NCCN 2013).

Patients with metastatic bowel cancer who receive all the available chemotherapy agents during a series of treatment periods have longer survival than patients receiving fewer than all agents (Grothey et al 2004).

Most guidelines do not recommend routine chemotherapy for stage II colon cancer.

There is a strong evidence base for the underutilisation of chemotherapy for bowel cancer patients with comorbidities. This is particularly important for Māori with bowel cancer, who are more likely to have comorbidities than non-Māori (Hill et al 2010a). A recent study (Hill et al 2010a) found that after adjusting for patient comorbidity and tumour characteristics, Māori patients with stage III disease were still significantly less likely to be offered (RR 0.8, 95% CI 0.65–0.98) or to receive (RR 0.71, 95% CI 0.53–0.96) adjuvant chemotherapy. When they received adjuvant chemotherapy, Māori patients were more likely to experience delay; over 50 percent waited eight weeks or more to start chemotherapy, compared with 25 percent of non-Māori patients (RR 2.02, 95% CI 1.10–3.71). The study found no evidence of ethnic differences in patient preferences for treatment.

The inequities that occur at multiple points along the care pathway (see Figure 1) add up to the differences in survival and mortality between Māori and non-Māori, as described in this document’s introduction.

Figure 1: Multiple small steps toward inequity

* Age- and sex-standardised prevalence.

Source: Hill et al 2010a

Good practice points

7.16 Patients with stage II colon cancer at higher risk are offered chemotherapy with a similar regimen to stage III patients.

7.17 Patients who are well enough to receive chemotherapy are offered an oxaliplatin-based regimen.

7.18 Patients with resectable liver metastases from bowel cancer are seen before liver resection by a medical oncologist and considered for perioperative combination chemotherapy.

7.19 Patients with borderline resectable liver metastases from bowel cancer are discussed in a bowel cancer MDM and considered for down-staging combination chemotherapy.

7.20 Patients with unresectable metastatic bowel cancer are seen by a medical oncologist and considered for palliative systemic therapy with currently available and funded chemotherapy agents.

7.21 Patients are fully informed of systemic and locoregional therapies that are available in New Zealand but not funded by the public health system (eg, monoclonal antibodies and selective internal radiation therapy).

Monitoring requirements

MR7C

Report on time between date of resection and commencement of adjuvant chemotherapy in bands: less than four weeks, four to eight weeks, and more than eight weeks.

MR7D

Record the proportion of patients with stage III colon cancer who receive chemotherapy.

MR7E

Record the proportion of patients dying of bowel cancer who had been treated with one, two or three chemotherapy drugs.

Treatment – radiotherapy

Standard 19

Patients with rectal cancer receiving long-course radiotherapy (preoperative or post-operative) are offered concurrent chemotherapy.

Rationale

Short-course pelvic radiotherapy and long-course chemoradiotherapy improve local control of rectal cancer better than surgery alone. The absolute benefit is significant for tumours with a moderate or high risk of local recurrence. An example of risk stratification to identify such tumours is reproduced in Appendix 4 (NICE 2011).

Randomised trials have demonstrated that concurrent 5-fluorouracil with preoperative long-course radiotherapy further improves local control (Bosset et al 2006; Gérard et al 2006). Long-course chemoradiotherapy gives better local control with less toxicity when given preoperatively.

In the preoperative setting, short-course radiotherapy and long-course chemoradiotherapy have not been shown conclusively to differ in efficacy. However, because long-course chemoradiotherapy with an interval before surgery has been shown to result in significant tumour shrinkage, this approach is favoured over short-course radiotherapy where there is a high risk of local recurrence due to a positive circumferential resection margin or a very low tumour (NZGG 2011b; NICE 2011). Newer surgical techniques, such as cylindrical abdominoperineal resection, are being evaluated; they may reduce the need for preoperative radiotherapy in the future.

Good practice points

7.22 Patients with rectal cancer who are at moderate or high risk of local recurrence receive preoperative radiotherapy (NZGG 2011b; NICE 2011).

7.23 Patients with a low rectal cancer requiring abdominoperineal resection receive long-course chemoradiotherapy (NZGG 2011b).

7.24 Concurrent chemotherapy is either 5-fluorouracil or capecitabine (Hofheinz et al 2012; Roh et al 2011).

7.25 Care of all patients with rectal cancer receiving radiotherapy with curative intent is planned with 3D technology (expert opinion).

7.26 The clinical target volume for radiotherapy with curative intent includes the mesorectum, presacral space and internal iliac nodes (expert opinion).

7.27 Reasons for patients not receiving concurrent chemotherapy are recorded and audited.

Monitoring requirements

MR7F

Record the percentage of patients receiving long-course radiotherapy who also received concurrent chemotherapy.

Treatment – palliative care

Standard 20

Patients are offered early access to palliative care services when there are complex symptom control issues, when curative treatment cannot be offered or if curative treatment is declined.

Rationale

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).

The National Bowel Tumour Standards Working Group endorses Guidance for Improving Supportive Care for Adults with Cancer in New Zealand (Ministry of Health 2010b).

Access to palliative care should be available for all people.

The collection and use of ethnicity data in palliative care services requires considerable attention, including more widespread adoption of Ministry of Health ethnicity data protocols, use of the standardised ethnicity question and training for staff.

Good practice points

7.28 Palliative intervention or resection of the symptomatic primary tumour is considered (routine resection of the asymptomatic primary tumour is not recommended).

7.29 Surgical intervention for malignant obstruction due to peritoneal carcinomatosis is considered on a case-by-case basis, and the palliative care specialist team and the surgical team closely collaborate in the decision-making process.

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

7.31 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.

7.32 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.

Monitoring requirements

MR7G

Ensure that records of proposed plans of care, onward referrals and follow-up responsibilities are recorded at MDM reviews and on patients’ notes.

MR7H

Prepare publicly available annual reports on palliative care plans, including audit results by ethnicity.

8 Follow-up and Surveillance

Standard 21

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

Studies indicate patients with bowel cancer who undergo intensive follow-up are likely to have a survival benefit when compared with those who undergo conventional or less intensive follow-up (Hickey and Hider 2007). Follow-up strategies that include endoscopic surveillance, serum CEA and imaging may improve overall survival.

Good practice points

8.1 Patients receive a follow-up colonoscopy every three to five years, as recommended in Guidance on Surveillance for People at Increased Risk of Colorectal Cancer (NZGG 2011a).

8.2 Follow-up of patients who have had curative treatment for colorectal cancer includes assessment of psychological or physical support needs resulting from the effects of their treatment.

8.3 Health promotion and healthy lifestyle advice and resources are provided to patients and their family/whānau as part of the follow-up plan.

8.4 General practitioners discuss Green Prescriptions as part of the follow-up plan.

8.5 Clinical assessment and serum CEA assessment is considered for patients with colon cancer at high risk of local recurrence and metastatic disease (stages IIb, IIc and III), at least every six months for the first three years after initial surgery and then annually for a further two years or when symptoms occur.

8.6 Clinical assessment and serum CEA assessment is considered for patients with bowel cancer at lower risk of local recurrence and metastatic disease (stages I and IIa) or for people with comorbidities restricting future surgery, when symptoms occur or by annual review for five years after initial surgery.

8.7 All patients who are otherwise fit who have had a resection of colorectal cancer for cure have a colonoscopy before surgery or within 12 months following initial surgery.

8.8 Surveillance colonoscopy is offered to all patients under age 75, unless they have comorbidities restricting further surgery. Patients who had a complete colonoscopy preoperatively are offered a surveillance colonoscopy three years after initial treatment. If this investigation is normal, further colonoscopic follow-up is considered after five years. The timing of surveillance for patients with subsequent adenomas is determined by the risk status of the adenoma.

8.9 All patients with stage II and III bowel cancer should undergo liver imaging with at least one CT between years one and three.

8.10 Reinvestigation is initiated if there is any clinical, radiological or biochemical suspicion of recurrent disease.

8.11 Regular follow-up stops when the patient and health care professional have discussed and agreed that the likely benefits no longer outweigh the risks of further tests, or when the patient cannot tolerate further treatments.

8.12 Follow-up is directed by the MDT and may occur in the primary care setting, by the colorectal nurse specialist or by the surgeon.

8.13 DHBs offer follow-up in secondary care at no cost to the patient, although patients may elect to opt out and pay for follow-up in primary or secondary care.

8.14 Follow-up for patients with stage IV disease is individualised.

8.15 Follow-up for patients with rectal cancer undergoing treatment with curative intent starts at a clinic visit four to six weeks after potentially curative surgery, and four to six weeks after temporary stoma closure.

8.16 All patients are offered specific information on managing the effects of the treatment on their bowel function. This could include information on incontinence, diarrhoea, difficulty emptying bowels, bloating, excess flatus and diet, and where to go for help in the event of symptoms.

8.17 Clinical assessment of patients with stage II and III rectal cancer is undertaken at four to six weeks, then six-monthly until three years after initial surgery, then yearly until five years after initial surgery, or when symptoms occur. Clinical assessment includes digital rectal examination, proctoscopy or sigmoidoscopy.

8.18 MRI of the pelvis is considered for patients with rectal tumours with a non-peritonealised histological margin <1 mm at intervals in the first three years.

8.19 Where rectal cancer is treated by local excision, careful follow-up and endoscopic examination is undertaken.

Monitoring requirements

MR8A

Prepare publicly available annual reports on surveillance and follow-up plans, including audit results by ethnicity and audit of written follow-up information provided following agreed surveillance protocols.

9 Clinical Performance Monitoring and Research

Standard 22

Data relating to bowel cancer beyond the fields required by the Cancer Registry, including treatment data, are reported to national repositories using nationally agreed data set fields.

Standard 23

Patients with bowel cancer are offered the opportunity to participate in research projects and clinical trials where they are available.

Rationale

There is currently no national cancer database other than the New Zealand Cancer Registry, which is a population-based register of all primary malignant tumours diagnosed in New Zealand. The National Bowel Tumour Standards Working Group strongly supports the Ministry of Health’s work to develop a national cancer database.

Information on patients with bowel cancer should be collected systematically on regional databases to monitor, evaluate and improve access to services and outcomes for patients. MDTs are responsible for collecting and managing this information.

The aim of Standard 22 is to construct an electronic database for bowel cancer to integrate demographic (including ethnicity), diagnostic, treatment, outcome (including palliative care) and other medical information (eg, a family history of bowel cancer) to contribute to service and clinical performance monitoring and research to improve patient outcomes.

The existing Colorectal Surgical Society of Australia and New Zealand (CSSANZ) bi-national colorectal cancer database (CSSANZ 2011) has been well developed, is supported by surgeons and allows comparisons between units and over time.

Clinical research is an integral part of the provision of core bowel cancer clinical services.

Good practice points

9.1 Tumour standards are audited in a consistent manner; all DHBs use the same audit tool.

9.2 MDMs conduct formal audits and reviews of complications at regular intervals (eg, quarterly or twice yearly) outside actual MDMs, as deemed appropriate by the members of the group.

9.3 Service providers consider making short- and long-term data on outcomes public.

9.4 Providers inform patients that their information is being recorded in a bowel cancer database to help the MDT propose a treatment plan and to monitor and evaluate access to services.

9.5 Where data are collected, they are compiled in accordance with the National Cancer Core Data Definition standards (IT Health Board 2011).

9.6 Auditable data includes data on access, timeliness and quality of care, and detailed data on comorbidities and chemotherapy.

9.7 All bowel cancer services have an equity-focused quality improvement plan that includes collecting, analysing and reporting ethnicity data at a minimum.

9.8 An national annual report on bowel cancer services that includes an equity-focused quality improvement plan is produced.

9.9 Services collect ethnicity data 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.

9.10 In constructing a data set, services consider CSSANZ’s existing bi-national data set.

9.11 Technology to facilitate data collection is made available to all DHBs.

9.12 The bowel cancer database records information on supportive care and palliative care.

Monitoring requirements

MR9A

Set up a bowel cancer database.

MR9B

Record the percentage of patients audited and the completeness of their data sets.

MR9C

Provide evidence of reporting of required patient data sets to national data repositories (as available) at the agreed frequency.

MR9D

Ensure that MDMs provide documentation of all open trials/research projects, and the number of patients entered in them per trial per year.

MR9E

Report annually on the equity-focused quality improvement plan.

Appendix 1:
National Bowel Cancer Tumour Standards Working Group Membership

Chair

Prof Frank Frizelle, Colorectal Surgeon, Canterbury DHB

Members

Dr Mark Jeffery (deputy chair), Medical Oncologist, Canterbury DHB

Assoc Prof Chris Atkinson, Radiation Oncologist, St George’s Hospital

Dr Wayne Bailey, Radiologist, Canterbury DHB

Emma Bell, Project Manager, Southern Cancer Network

Annie Bermingham, Network Manager, Southern Cancer Network

Dr Frances Beswick, Anaesthetist, South Canterbury DHB

Dr Sue Crengle, Māori Public Health Physician

Nieves Ehrenberg, Project Support/Writer, Sapere Research Group

Dr Chris Jackson, Medical Oncologist, Southern DHB

Dr Gabes Lau, Radiologist, Southern DHB

Mr Simi Lolohea, General Surgeon, Waikato DHB

Kim Macfarlane, Colorectal Clinical Nurse Specialist, Canterbury DHB

Angela McNabb, Charge Nurse, Christchurch Charity Hospital

Dr Andrew Moot, General Surgeon, Hawke’s Bay DHB

Prof Bryan Parry, Colorectal Surgeon, Auckland DHB

Prof Ann Richardson, Professor of Cancer Epidemiology, University of Canterbury

Denise Robbins, Consumer

Dr Nina Scott, Māori Public Health Physician, Waikato DHB

Assoc Prof Mark Thompson-Fawcett, Colorectal Surgeon, Southern DHB

Dr Iain Ward, Radiation Oncologist, Canterbury DHB

Judy Warren, Colorectal Clinical Nurse Specialist, Waikato DHB

Dr Martin Whitehead, Anatomical Pathologist, Canterbury DHB

Mr Gavin Wilton, General Surgeon, South Canterbury DHB

Appendix 2:
Glossary

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, orthoptists, paramedics, prosthetists/orthotists and speech and language therapists

Asymptomatic

Without obvious signs or symptoms of disease. In early stages, cancer may develop and grow without producing symptoms

Benign

Not cancerous; not malignant

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 cross-sectional slices through the body part being examined

Confirmed diagnosis (used in FCT indicators)

The preferred basis of a confirmed cancer diagnosis is pathological, noting that for a small number of patients cancer diagnosis will be based on diagnostic imaging findings

Consumer

A user of services

Curative

Aiming to cure a disease

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

End of life care

The provision of supportive and palliative care in response to the assessed needs of the patient and family/whānau during the end-of-life phase

Epidemiology

The study of populations in order to determine the frequency and distribution of disease and to measure risks

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

First specialist assessment (FSA)

Face-to-face contact (including telemedicine) between a patient and a registered medical practitioner or nurse practitioner for the purposes of first assessment for their condition for that specialty

First treatment (used in FCT indicators)

The treatment or other management that attempts to begin 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 2002b)

Health inequality/inequity

Differences in health that are unnecessary, avoidable or unjust (Ministry of Health 2002b)

High suspicion of cancer (used in FCT indicators)

Where a patient presents with clinical features typical of cancer, or has less typical signs and symptoms but the clinician suspects that there is a high probability of cancer

Histological

Relating to the study of cells and tissue on the microscopic level

Holistic

Looking at the whole system rather than just concentrating on individual components

Hospice

Hospice is not only a building; it is a philosophy of care. The goal of hospice care is to help people with life-limiting and life-threatening conditions make the most of their lives by providing high-quality palliative and supportive care

Lesion

An area of abnormal tissue

Local recurrence

Local persistence of a primary tumour due to incomplete excision

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)

Malignant

Cancerous. Malignant tumours can invade and destroy nearby tissue and spread to other parts of the body

Medical oncologist

A doctor who treats cancer patients through the use of chemotherapy, and, for some tumours, immunotherapy

Medical oncology

The specialist treatment of cancer patients through the use of chemotherapy and, for some tumours, immunotherapy

Metastases

Cancerous tumours in any part of the body that have spread from the original (primary) origin. Also known as ‘secondaries’

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

National Health Index (NHI) number

A unique identifier for New Zealand health care users

NZGG

New Zealand Guidelines Group

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

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

Quality assurance

All the planned and systematic activities implemented within the quality system

Radiation oncologist

A person who is registered as a medical practitioner by the relevant medical board, is a fellow of the Royal Australian and New Zealand College of Radiologists or equivalent and is licensed to prescribe radiation therapy

Radiologist

A doctor who specialises in creating and interpreting pictures of areas inside the body using X-rays and other specialised imaging techniques. An interventional radiologist specialises in the use of imaging techniques for treatment; for example catheter insertion for abscess drainage

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

Stage

The extent of a cancer; especially whether the disease has spread from the original site to other parts of the body

Staging

Usually refers to the Tumour, node, metastasis system for grading tumours by the American Joint Committee on Cancer

Supportive care

Supportive care helps a patient and their family/whānau to cope with their condition and treatment – from pre-diagnosis through the process of diagnosis and treatment to cure, continuing illness or death, and into bereavement. It helps the patient to maximise the benefits of treatment and to live as well as possible with the effects of 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

Toxicity

Refers to the undesirable and harmful side-effects of a drug

Ultrasound

A non-invasive technique using ultrasound waves (high-frequency vibrations beyond the range of audible sound) to form an image

Whānau

Māori term for a person’s immediate family or extended family group. In the modern context, sometimes used to include people without kinship ties

Whānau Ora

An inclusive interagency approach to providing health and social services to build the capacity of New Zealand families. It empowers family/whānau as a whole, rather than focusing separately on individual family members

X-ray

A photographic or digital image of the internal organs or bones produced by the use of ionising radiation

Appendix 3:
The Colorectal Cancer Patient Pathway

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Appendix 4:
Suggested Stratification of Risk of Local Recurrence for Rectal Tumours as Predicted by MRI

Risk of local recurrence

Characteristics of rectal tumours predicted by MRI

High

a threatened (<1 mm) or breached resection margin or

low tumours encroaching onto the inter-sphincteric plane or with levator involvement

Moderate

any cT3b or greater, in which the potential surgical margin is not threatened or

any suspicious lymph node not threatening the surgical resection margin or

the presence of extramural vascular invasion

Low

cT1 or cT2 or cT3a and

no lymph node involvement

Appendix 5:
Colorectal Pathology Report Format

Clinical

Perforation:

Clinical obstruction:

Tumour location:

Preoperative radiotherapy:

Residual cancer post-surgery:

Involvement of adjacent organs:

New primary cancer or recurrence:

Macroscopic

Specimen length:

Tumour site:

Relationship to anterior peritoneal reflection (rectum):

Tumour perforation:

Intactness of mesorectal excision (rectum):

Maximum tumour dimension:

Nature and site of blocks:

Microscopic

Tumour type (WHO):

Histological grade:

Depth of invasion:

Small vessel invasion:

Venous invasion:

Extramural /intramural

Perineural invasion:

Margins:

Proximal:

Distal:

Radial/non-peritoneal surface margin:

Lymph nodes:

Number present:

Number positive:

Apical node involvement:

Isolated extra-mural deposits:

Distant metastases:

Co-existing abnormalities:

Completeness of resection:

Response to Rx:

Ancillary studies performed (Mismatch repair genes, BRAF, KRAS):

Synthesis

Tumour stage (AJCC 7th edition):

Stage group:

Residual tumour status:

New primary cancer or recurrence:

Appendix 6:
References

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

Blakely T, Shaw C, Atkinson J, et al. 2010. Cancer Trends: Trends in Cancer Incidence by Ethnic and Socioeconomic Group, New Zealand 1981–2004. Wellington: University of Otago and Ministry of Health.

Blakely T, Shaw C, Atkinson J, et al. 2011. Social inequalities or inequities in cancer incidence? Repeated census-cancer cohort studies, New Zealand, 1981–1986 to
2001–2004. Cancer Causes Control 22: 1307–18.

Central Cancer Network. 2010. Cancer Medical Imaging Guidelines. Palmerston North: Central Cancer Network.

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

Hill S, Sarfati D, Blakely T, et al. 2010b. Survival disparities in Indigenous and non-Indigenous New Zealanders with colon cancer: the role of patient comorbidity, treatment and health service factors. Journal of Epidemiology and Community Health 64:117–23.

Hill S, Sarfati D, Robson B, et al. 2012. Indigenous inequalities in cancer: what role for health care? ANZ Journal of Surgery 83: 36–41.

Ministry of Health. 2002a. Cancer in New Zealand: trends and projections. Wellington: Ministry of Health.

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

Ministry of Health. 2005. Atlas of Cancer Mortality in New Zealand 1994–2000. Wellington: Ministry of Health.

Ministry of Health. 2010a. Cancer Projections: Incidence 2004–08 to 2014–18. Wellington: Ministry of Health.

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

Ministry of Health. 2010c. Tatau Kahukura: Māori Health Chart Book 2010 (2nd edition). Wellington: Ministry of Health.

Ministry of Health. 2011a. About Bowel Cancer. URL: www.health.govt.nz/our-work/diseases-and-conditions/cancer-programme/bowel-cancer-programme/about-bowel-cancer (accessed 6 August 2013).

Ministry of Health. 2011b. Radiation Oncology Prioritisation Guidelines. URL: HYPERLINK “http://www.midlandcancernetwork.org.nz/file/fileid/44264” \o “http://www.midlandcancernetwork.org.nz/file/fileid/44264” www.midlandcancernetwork.org.nz/file/fileid/44264 (accessed 6 August 2013).

Ministry of Health. 2011c. Targeting Shorter Waits for Cancer Treatment. Wellington: Ministry of Health.

Ministry of Health. 2012a. Cancer: New Registrations and Deaths 2009. Wellington: Ministry of Health.

Ministry of Health. 2012b. Guidance for Implementing High-Quality Multidisciplinary Meetings: Achieving Best Practice Cancer Care. Wellington: Ministry of Health.

Ministry of Health. 2013. Faster Cancer Treatment Programme. URL: www.health.govt.nz/our-work/diseases-and-conditions/cancer-programme/faster-cancer-treatment-project (accessed 6 August 2013).

Ministry of Health. Bowel Cancer Screening Pilot 2011–2015. URL: HYPERLINK “C:\\Users\\WordPRO4\\Documents\\Downloaded documents\\www.health.govt.nz\\our-work\\diseases-and-conditions\\cancer-programme\\bowel-cancer-programme\\bowel-screening-pilot”www.health.govt.nz/our-work/diseases-and-conditions/cancer-programme/bowel-cancer-programme/bowel-screening-pilot. 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.

NZGG. 2004. Evidence-based Best Practice Guideline Summary: Surveillance and management of groups at increased risk of colorectal cancer. Wellington: New Zealand Guidelines Group.

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

NZGG. 2011b. Management of Early Colorectal Cancer – Evidence-based Best Practice Guidelines. Wellington: New Zealand Guidelines Group.

Northern Cancer Network. 2011. Northern Regional Cancer Care Coordination Model. URL: http://www.northerncancernetwork.org.nz/Projects/NorthernRegionCancerCareCoordinationModel/tabid/140/language/en-US/Default.aspx (accessed 6 August 2013).

Robson B, Purdie G, Cormack D. 2010. Unequal Impact II: Māori and NonMāori Cancer Statistics by Deprivation and Rural–Urban Status, 2002–2006. Wellington: Ministry of Health.

Statistics New Zealand. 2006. Demographic Aspects of New Zealand’s Ageing Population. Wellington: Statistics New Zealand.

Introduction

Blakely T, Shaw C, Atkinson J, et al. 2010. Cancer Trends: Trends in Cancer Incidence by Ethnic and Socioeconomic Group, New Zealand 1981–2004. Wellington: University of Otago and Ministry of Health.

Blakely T, Shaw C, Atkinson J, et al. 2011. Social inequalities or inequities in cancer incidence? Repeated census-cancer cohort studies, New Zealand, 1981–1986 to
2001–2004. Cancer Causes Control 22: 1307–18.

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

Hill S, Sarfati D, Blakely T, et al. 2010b. Survival disparities in Indigenous and non-Indigenous New Zealanders with colon cancer: the role of patient comorbidity, treatment and health service factors. Journal of Epidemiology and Community Health 64: 117–123.

Hill S, Sarfati D, Robson B, et al. 2012. Indigenous inequalities in cancer: what role for health care? ANZ Journal of Surgery 83: 36–41.

Ministry of Health. 2002a. Cancer in New Zealand: Trends and projections. Wellington: Ministry of Health.

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

Ministry of Health. 2003. The New Zealand Cancer Control Strategy. Ministry of Health.

Ministry of Health. 2005b. The New Zealand Cancer Control Strategy Action Plan
2005–2010
. Wellington: Ministry of Health.

Ministry of Health. 2010a. Cancer Projections: Incidence 2004–08 to 2014–18. Wellington: Ministry of Health.

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

Ministry of Health. 2010c. Tatau Kahukura: Māori Health Chart Book 2010 (2nd edition). Wellington: Ministry of Health.

Ministry of Health. 2011a. About Bowel Cancer. URL: www.health.govt.nz/our-work/diseases-and-conditions/cancer-programme/bowel-cancer-programme/about-bowel-cancer (accessed 6 August 2013).

Ministry of Health. 2012a. Cancer: New Registrations and Deaths 2009. Wellington: Ministry of Health.

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

National Lung Cancer Working Group. 2011. Standards of Service Provision for Lung Cancer Patients in New Zealand. Wellington: Ministry of Health.

NZGG. 2004. Evidence-based Best Practice Guideline Summary: Surveillance and management of groups at increased risk of colorectal cancer. Wellington: New Zealand Guidelines Group.

Robson B, Purdie G, Cormack D. 2010. Unequal Impact II: Māori and NonMāori Cancer Statistics by Deprivation and Rural–Urban Status, 2002–2006. Wellington: Ministry of Health.

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

Statistics New Zealand. 2006. Demographic Aspects of New Zealand’s Ageing Population. Wellington: Statistics New Zealand.

Timely access to services

Ministry of Health. 2012c. Medical Oncology Prioritisation Criteria. URL: www.nsfl.health.govt.nz/apps/nsfl.nsf/pagesmh/401 (accessed 6 August 2013).

National Bowel Cancer Working Group Subcommittee. 2012. Referral Criteria for Direct Access Outpatient Colonoscopy. URL: www.midlandcancernetwork.org.nz/file/fileid/45322 (accessed 6 August 2013).

Woodley D. 2012. Implementing the Faster Cancer Treatment Indicators – Supplementary Information. (Letter to DHB Chief Executive Officers and General Managers Planning and Funding, cc DHB Chief Information Officers, Chief Operating Officers and Regional Cancer Network Managers.) URL: www.midlandcancernetwork.org.nz/file/fileid/44227 (accessed 6 August 2013).

Referral and communication

Ministry of Health. 2011b. Radiation Oncology Prioritisation Guidelines. URL: HYPERLINK “http://www.midlandcancernetwork.org.nz/file/fileid/44264” \o “http://www.midlandcancernetwork.org.nz/file/fileid/44264” www.midlandcancernetwork.org.nz/file/fileid/44264 (accessed 6 August 2013).

Ministry of Health. 2012c. Medical Oncology Prioritisation Criteria. URL: www.nsfl.health.govt.nz/apps/nsfl.nsf/pagesmh/401 (accessed 6 August 2013).

National Bowel Cancer Working Group Subcommittee. 2012. Referral Criteria for Direct Access Outpatient Colonoscopy. URL: www.midlandcancernetwork.org.nz/file/fileid/45322 (accessed 6 August 2013).

NICE. 2011. Colorectal cancer: The diagnosis and management of colorectal cancer: Full Guideline. London: National Institute for Health and Clinical Excellence.

Investigation, diagnosis and staging

ACGBI. 2007. Guidelines for the Management of Colorectal Cancer (3rd edition). London: Association of Coloproctology of Great Britain and Ireland.

Lipton LR, Johnson V, Cummings C, et al. 2004. Refining the Amsterdam Criteria and Bethesda Guidelines: testing algorithms for the prediction of mismatch repair mutation status in the familial cancer clinic. Journal of Clinical Oncology 22(24): 4934–43.

NICE. 2011. Colorectal cancer: The diagnosis and management of colorectal cancer: Full Guideline. London: National Institute for Health and Clinical Excellence.

NZGG. 2011b. Management of Early Colorectal Cancer – Evidence-based Best Practice Guidelines. Wellington: New Zealand Guidelines Group.

RCPA. 2012. Colorectal Cancer Structured Reporting Protocol (2nd edition). Sydney: Royal College of Pathologists of Australasia.

Multidisciplinary care

Ministry of Health. 2012b. Achieving Best Practice Cancer Care: Guidance for implementing quality multidisciplinary meetings. Wellington: Ministry of Health.

NZGG. 2011b. Management of Early Colorectal Cancer – Evidence-based Best Practice Guidelines. Wellington: New Zealand Guidelines Group.

Supportive care

Lipton LR, Johnson V, Cummings C, et al. 2004. Refining the Amsterdam Criteria and Bethesda Guidelines: testing algorithms for the prediction of mismatch repair mutation status in the familial cancer clinic. Journal of Clinical Oncology 22(24): 4934–43.

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

Care coordination

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

National Lung Cancer Working Group. 2011. Standards of Service Provision for Lung Cancer Patients in New Zealand. Wellington: Ministry of Health.

Northern Cancer Network. 2011. Northern Regional Cancer Care Coordination Model. URL: http://www.northerncancernetwork.org.nz/Projects/NorthernRegionCancerCareCoordinationModel/tabid/140/language/en-US/Default.aspx (accessed 6 August 2013).

Treatment

HYPERLINK “http://www.ncbi.nlm.nih.gov/pubmed?term=Archampong%20D%5BAuthor%5D&cauthor=true&cauthor_uid=22419309” Archampong D,  HYPERLINK “http://www.ncbi.nlm.nih.gov/pubmed?term=Borowski%20D%5BAuthor%5D&cauthor=true&cauthor_uid=22419309” Borowski D,  HYPERLINK “http://www.ncbi.nlm.nih.gov/pubmed?term=Wille-J%C3%B8rgensen%20P%5BAuthor%5D&cauthor=true&cauthor_uid=22419309” Wille-Jørgensen P, et al. 2012. Workload and surgeon’s specialty for outcome after colorectal cancer surgery.  HYPERLINK “http://www.ncbi.nlm.nih.gov/pubmed/22419309” \o “The Cochrane database of systematic reviews.” Cochrane Database of Systematic Reviews. Mar 14 (3): CD005391.

BAHNO. 2009. BAHNO Standards 2009. London: British Association of Head and Neck Oncologists.

Biagi JJ, Raphael MJ, MacKillop WJ, et al. 2011. Association between time to initiation of adjuvant chemotherapy and survival in colorectal cancer: A systematic review and meta-analysis. Journal of the American Medical Association 305(22): 2335–42.

Bosset JF, Collette L, Calais G, et al. 2006. Chemotherapy with preoperative radiotherapy in rectal cancer. New England Journal of Medicine 355: 1114–23.

Bujko K, Nowacki MP, Nasierowska-Guttmejer A, et al. 2006. Long-term results of a randomized trial comparing preoperative short-course radiotherapy with preoperative conventionally fractionated chemoradiation for rectal cancer. British Journal of Surgery 93: 1215–23.

Chang GJ, Kaiser AM, Mills S, et al. 2012. Practice Parameters for the Management of Colon Cancer. Diseases of the Colon and Rectum 55: 831–43.

Colorectal Cancer Collaborative Group. 2001. Adjuvant radiotherapy for rectal cancer: a systematic overview of 8507 patients from 22 randomised trials. Lancet 358: 1291–1304.

Eskicioglu C, Forbes SS, Aarts MA, et al. 2009. Enhanced recovery after surgery (ERAS) programs for patients having colorectal surgery: a meta-analysis of randomized trials. Journal of Gastrointestinal Surgery 13(12): 2321–9.

Gérard JP, Conroy T, Bonnetain F, et al. 2006. Preoperative radiotherapy with or without concurrent fluorouracil and leucovorin in T3–4 rectal cancers: results of FFCD 9203. Journal of Clinical Oncology 24: 4620–5.

Gouvas N, Tan E, Windsor A, et al. 2009. Fast-track vs standard care in colorectal surgery: a meta-analysis update. International Journal of Colorectal Disease 24(10): 1119–31.

Grothey A, Sargent D, Goldberg RM, et al. 2004. Survival of patients with advanced colorectal cancer improves with the availability of fluorouracil-leucovorin, irinotecan, and oxaliplatin in the Course of Treatment. Journal of Clinical Oncology 22: 1209–14.

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

Hill S, Sarfati D, Robson B, et al. 2012. Indigenous inequalities in cancer: what role for health care? ANZ Journal of Surgery 83: 36–41.

HYPERLINK “http://www.ncbi.nlm.nih.gov/pubmed?term=Hofheinz%20RD%5BAuthor%5D&cauthor=true&cauthor_uid=22503032” Hofheinz RD,  HYPERLINK “http://www.ncbi.nlm.nih.gov/pubmed?term=Wenz%20F%5BAuthor%5D&cauthor=true&cauthor_uid=22503032” Wenz F,  HYPERLINK “http://www.ncbi.nlm.nih.gov/pubmed?term=Post%20S%5BAuthor%5D&cauthor=true&cauthor_uid=22503032” Post S, et al. 2012. Chemoradiotherapy with capecitabine versus fluorouracil for locally advanced rectal cancer: a randomised, multicentre, non-inferiority, phase 3 trial.  HYPERLINK “http://www.ncbi.nlm.nih.gov/pubmed/22503032” \o “The lancet oncology.” Lancet Oncology 13(6): 579–88.

Hospice New Zealand. 2012. Standards for Palliative Care: Quality review programme and guide. Wellington: Hospice New Zealand.

Levy M, Adolph MD, Black A, et al. 2012. Palliative care: Clinical practice guidelines in oncology. Journal of the National Comprehensive Cancer Network 10(10): 1284–1309.

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

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

NCCN. 2013. NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines) – Colon Cancer. Version 3.2013. Fort Washington: National Comprehensive Cancer Network.

Ngan SY, Burmeister B, Fisher RJ, et al. 2012. Randomized trial of short-course radiotherapy versus long-course chemoradiation comparing rates of local recurrence in patients with T3 rectal cancer: Trans-Tasman Radiation Oncology Group trial 01.04. Journal of Clinical Oncology 30: 3827–33.

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Follow-up and surveillance

Jeffery M, Hickey BE, Hider PN. 2007. Follow-up strategies for patients treated for non-metastatic colorectal cancer. Cochrane Database of Systematic Reviews Jan 24 (1): CD002200.

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NZGG. 2011b. Management of Early Colorectal Cancer – Evidence-based Best Practice Guidelines. Wellington: New Zealand Guidelines Group.

Clinical performance monitoring and research

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Appendices

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

Ministry of Health. Bowel Cancer Screening Pilot 2011–2015. URL: HYPERLINK “C:\\Users\\WordPRO4\\Documents\\Downloaded documents\\www.health.govt.nz\\our-work\\diseases-and-conditions\\cancer-programme\\bowel-cancer-programme\\bowel-screening-pilot”www.health.govt.nz/our-work/diseases-and-conditions/cancer-programme/bowel-cancer-programme/bowel-screening-pilot. Wellington: Ministry of Health.

RCPA. 2012. Colorectal Cancer Structured Reporting Protocol (2nd edition). Sydney: Royal College of Pathologists of Australasia.

High risk is defined as: Māori with either or both stage III bowel cancer and comorbities.

The definition of ‘high suspicion of cancer’ is: (a) known or suspected bowel cancer (on imaging, or palpable, or visible on rectal examination for preoperative procedure to rule out synchronous pathology); (b) unexplained rectal bleeding (benign anal causes treated or excluded) with iron deficiency anaemia (haemoglobin below the local reference range); or (c) altered bowel habit (looser and/or more frequent) of more than six weeks duration plus unexplained rectal bleeding (benign anal causes treated or excluded) in patients aged over 50 years (National Bowel Cancer Working Group Subcommittee 2012).

See https://nz.jagaccreditation.org and www.bopdhb.govt.nz/neqip (accessed 6 August 2013).

See https://nz.jagaccreditation.org and www.bopdhb.govt.nz/neqip (accessed 6 August 2013).

High risk is defined as: Māori with either or both stage III bowel cancer and comorbities.

‘Tumour board’ refers to a treatment planning approach in which doctors who are experts in different specialties or disciplines review and discuss individual medical conditions and treatment options. It does not usually include a range of health professionals, and has a narrower scope than an MDM. A multidisciplinary team comprises a range of health professionals from one or more organisations, working together to deliver comprehensive patient care. For the purposes of this document, the term ‘multidisciplinary team’ is preferred.

Personal communication S Crengle 22 December 2012.

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.

Adapted from NICE 2011.

Adapted from RCPA 2012.

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