Standards of
Service Provision for Head and Neck Cancer Patients in New Zealand- Provisional
National Head and Neck Cancer Tumour Standards Working Group
2013
Citation: National Head and Neck Cancer Tumour Standards Working Group. 2013.
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand - Provisional.
Wellington: Ministry of Health.
Revised January 2014
Published in December 2013 by the
Ministry of Health
PO Box 5013, Wellington 6145, New Zealand
ISBN 978-0-478-41543-8 (online)
HP 5746
This document is available through the Ministry of Health website: www.health.govt.nz
or from the regional cancer network websites:
www.northerncancernetwork.org.nz
www.midland cancernetwork.org.nz
www.centralcancernetwork.org.nz
www.southerncancernetwork.org.nz
Contents
Introduction 1
Background 1
Objective 3
How the head and neck cancer service standards were developed 3
Equity and Whānau Ora 4
Summary of the clinical standards for the management of head and neck cancer services 6
Standards of service provision pathway 6
Summary of standards 7
1 Prevention and Early Identification 10
Rationale 10
Good practice points 11
2 Timely Access to Services 12
Rationale 12
Good practice points 13
3 Referral and Communication 14
Referral 14-15
Rationale 14-15
4 Investigation, Diagnosis and Staging 16
Rationale 16-21
Good practice points 16-21
5 Multidisciplinary Care 22
Rationale 22-26
Good practice points 22-26
6 Supportive Care 27
Rationale 27
Good practice points 27
7 Care Coordination 29
Rationale 29
Good practice points 29
8 Treatment 30
Rationale 30-33
Good practice points 30-33
9 Follow-up and Surveillance 35
Rationale 35-37
Good practice points 35-37
10 Clinical Performance Monitoring and Research 39
Rationale 39-40
Good practice points 39-40
Appendix 1: National Head and Neck Cancer Tumour Standards Working Group Membership 41
Appendix 2: Glossary 43
Appendix 3: References 48
Standards of Service Provision for Head and Neck Cancer Patients in New Zealand - Provisional
Introduction
Background
For this purposes of this document, the term ‘head and neck cancer’ applies to the following sites in adults:
· mucosa of the head and neck (oral cavity and lip, pharynx, larynx and cervical oesophagus)
· nasal cavity and paranasal sinuses
· salivary glands
· skin of the head and neck, in the context of high-risk and advanced non-melanoma skin cancer.
Nationally, there are approximately 520 new cases of cancer of head and neck mucosal surfaces registered each year (Ministry of Health 2013). In addition, there are an estimated 200 cases of metastatic non-melanoma skin cancer of the head and neck registered annually, as well as a smaller number of salivary malignancies – these are currently not captured separately in the Cancer Registry.
Incidence of head and neck cancer by gender varies with primary cancer site; incidence rates in men are double the rates in women for oral cavity/pharyngeal cancers, and triple the rates in women for laryngeal cancer (National Cancer Institute 2003). The five-year survival rate for patients with head and neck cancer is approximately 60percent (Jemal et al 2002; Ries et al 2006; Saman 2012). While these cancers (excluding skin) represent only 2.5percent of all cancers (NCCN 2012), they require sophisticated and complex health care services, and the individual, social, family and economic burden is large.
Traditionally, major aetiological factors in head and neck cancer have been smoking and alcohol. Cigarette smoking is considered the most important risk factor for head and neck cancer (Saman 2012). A significant dose–response relationship exists between alcohol consumption and risk of head and neck cancer (Agudo et al 2006). Users of both tobacco and alcohol have a 50-fold (or greater) increased risk of developing head and neck cancer (Maier et al 1992; Rodriguez et al 2004).
While incidence of head and neck cancer is greatest in those over 50, incidence in young adults is on the rise, most likely attributable to human papillomavirus (HPV) exposure (Curado and Hashibe 2009; Marur and Forastiere 2008). Viral aetiologies are also implicated in cancers more common in certain ethnic groups. Nasopharyngeal cancer is associated with the Epstein-Barr Virus (EBV) as well as genetic and environmental factors, and is the commonest cancer of any site in Southern China (Wei and Sham 2005).
With each stage of human migration from Southern Asia into Polynesia in the last 5000 years there has been a graduated dilution of aetiological factors and cancer incidence. Thus the risk of nasopharyngeal carcinoma in New Zealand for Asians, Pacific Islanders and Māori compared to those of European descent is respectively eight times, five times and three times (Morton and Benjamin 1989). Pacific Islanders in New Zealand are also more likely to have smaller primary cancers and larger nodal metastases than their Asian counterparts (Ianovski et al 2009). As Asian and Pacific ethnic groups grow at faster rates than any other,[1] an increasing burden of patients with nasopharyngeal carcinoma is expected.
Human papillomavirus has been implicated in the rapid rise in the incidence of oropharyngeal (tonsil and base of tongue) cancer throughout the western world (Snijders et al 1992; Mellin et al 2000). This virus is also linked with cervical cancer; it is postulated that the increase in oropharyngeal cancer is associated with the sexual revolution and oral sex in western society. These cancers appear in an earlier age group, and incidence is usually not associated with the traditional risk factors of smoking and alcohol. Early data indicate that HPV-related tumours are more responsive to treatment and have a better prognosis than HPV-negative cancers (Hong et al 2010).
Current unpublished data from the Auckland regional Head and Neck Service indicate that, excluding cutaneous lesions, oropharyngeal cancer is now the most common head and neck malignancy; over 75percent of cases are HPV-positive. New Zealand currently offers free immunisation for HPV to girls aged 13 and over, but not to boys. Canada and Australia offer vaccination to girls and boys, in an effort to gain herd immunity. Expected benefits include a reduction in the incidence of both cervical cancer in women and oropharyngeal cancer in both sexes.
The head and neck is a common site for non-melanoma skin cancer due to ultraviolet (UV) skin exposure. Squamous cell carcinoma presents the greatest challenge, and is largely dealt with in primary care. However, there is a subset of more aggressive tumours that can be identified histologically and which carry an increased risk of recurrence and nodal metastases; these require treatment by a multidisciplinary team (MDT) (Peat et al 2012). In the context of an aging population and global warming, the incidence of such lesions is rising.
Studies in New Zealand and overseas have shown that patients with head and neck cancer generally experience a measurable improvement in quality of life in the first two to three years following treatment (Morton 2003). Long-term survival has also been shown to be significantly associated with early quality of life scores in these patients (Mehanna et al 2005). More recent Auckland research has shown that patients with head and neck cancer have substantial unmet needs, and that there is great potential for enhanced quality of life and other benefits for individuals if they receive adequate support (Cavell et al (in press)).
Head and neck cancer and its treatment may impinge on a patient’s facial appearance, voice and speech, oral continence, chewing and swallowing, breathing, hearing and sight. It may also impact on shoulder function. For this reason a multidisciplinary meeting (MDM) forms the basis of clinical care for head and neck cancer. The MDM involves specialists in ablative and reconstructive surgery; dental, oral and maxillofacial surgery; speech-language therapy; dietetics; and psychology, alongside a nurse specialist. These practitioners confer and interact with patients to determine optimal individual treatment pathways (BAHNO 2009; NHS Wales 2005).
A recent (unpublished) review of patients requiring major head and neck surgery in Auckland over a two-year period found that the average patient required two admissions, and spent a total 30 days in hospital. Because of the relatively low number of disparate cancers of the head and neck nationally, the requirement for multidisciplinary care and the large workload associated with inpatient care, a case can be made for a concentration of services, to consistently achieve optimal treatment outcomes and cost-effective care.
Objective
Tumour standards for all cancers are being developed as a part of the Ministry of Health’s ‘Faster Cancer Treatment’ (FCT) programme’s approach to ensuring timely clinical care for patients with cancer. 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 head and neck cancer service standards were developed
These standards were developed by a skilled working group representing key specialities and interests across the head and neck cancer pathway of care. The group was chaired by a lead clinician, and had access to expert advisors in key content areas.
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 head and neck cancer stream.
Where no clear evidence was available, expert opinion was obtained through the National Head and Neck Tumour Standards Working Group and its advisors (see Appendix 1).
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). DHBs have used these standards to make improvements to service delivery and clinical practice.
Subsequently provisional standards have been developed for ten tumour types: bowel, breast, gynaecological, lymphoma, melanoma, myeloma, head and neck, sarcoma, thyroid and upper gastrointestinal.
The Ministry of Health required all tumour standard working groups to:
Maintain a focus on achieving equity and whānau ora when developing service standards, patient pathways and service frameworks by ensuring an alignment with the Reducing Inequalities in Health Framework and its principles (Ministry of Health 2002).
These standards broadly follow the format of the Standards of Service Provision for Lung Cancer Patients in New Zealand.
Equity and Whānau Ora
The differential health status between Māori and non-Māori is an ongoing challenge for the health sector (Ministry of Health 2010c). Cancer is an important contributor to these health inequalities (Blakely et al 2011). Studies have shown that Māori are less likely to access primary oral health care compared to Pacific people and Europeans (Ministry of Health 2009). Māori males are twice as likely and Māori females three times as likely as non-Māori to have a smoking history (Ministry of Health 2010d).
Health inequities or health disparities are avoidable, unnecessary and unjust differences in the health of groups of people. In New Zealand, ethnic identity is an important dimension of health disparities. Cancer is a significant health concern for Māori, and has a major and disproportionate impact on Māori communities.
Inequities exist between Māori and non-Māori in exposure to risk and protective factors for cancer, in incidence and outcomes, and in access to cancer services. Barriers to health care are recognised as multidimensional, and include health system and health care factors (eg, institutional values, workforce composition, service configuration and location), as well as patient factors (eg, socioeconomic position, transportation and patient values). Addressing these factors requires a population health approach that takes account of all the influences on health and how they can be tackled to improve health outcomes.
A Whānau Ora approach to health care recognises the interdependence of people; health and wellbeing are influenced and affected by the ‘collective’ as well as the individual. It is important to work with people in their social contexts, and not just with their physical symptoms.
The outcome of the Whānau Ora approach in health will be improved health outcomes for family/whānau through quality services that are integrated (across social sectors and within health), responsive and patient/family/whānau-centred.
In preparing these standards, the Northern Cancer Network’s Māori Leadership Group provided expert advice to the working group, based on eight principles to identify and address issues of equity in access, process and outcome. These principles were specifically: a commitment to mana whenua and Māori communities, Whānau Ora, health equity, self-determination, indigeneity, ngā kaupapa tuku iho, whole-of-system responsibility and evidence-based approaches. It is intended that these principles are weaved through the standards, and support the inclusion of supporting rationale, good practice points and monitoring requirements.
These standards will address equity for Māori patients with head and neck cancers in the following ways.
· The standards focus on improving access to diagnosis and treatment for all patients, including Māori and Pacific.
· Māori access to cancer services will be monitored and evaluated.
· Ethnicity data will be collected on all access measures and the FCT indicators, and will be used to identify and address disparities.
· Good practice points for the standards include health literacy and cultural competency training for all health professionals involved in patient care.
· Information developed or provided to patients and their family will meet Ministry of Health guidelines (Ministry of Health 2012c).
· Māori participation in MDTs and networks will be invited, to develop treatment plans and care coordination and ensure an effective service delivery model.
Summary of the clinical standards for the management of head and neck cancer services
Format of the standards
Each cluster of standards has a title that summarises the step of the patient journey or the area on which the standards are focused. This is followed by the standard itself, which explains the level of performance to be achieved. The rationale section explains why the standard is considered to be important.
Attached to most of the clusters of standards are good practice points. Good practice points are supported either by the international literature, the opinion of the National Head and Neck Cancer Tumour Standards Working Group or the consensus of feedback from consultation with New Zealand clinicians involved in providing care to patients with head and neck cancer. Also attached to each cluster are the requirements for monitoring the individual standards.