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Lung Cancer in New Zealand
Lung cancer is a major health problem in New Zealand (NZ). Approximately 1500 people die each year from lung cancer in New Zealand. This represents 19% of all deaths from cancer, making lung cancer the leading cause of cancer deaths in New Zealand.1-3
Survival from lung cancer in New Zealand, especially for Maori, is poor compared with that in many other countries. The 5-year relative survival from lung cancer is 10.2% in NZ for the total population and 5.4% for Māori.1 However in some other countries, survival is as high as 15-18%.1-6
Poor survival from lung cancer is largely due to late diagnosis.7-12 Many patients have advanced disease by the time they are diagnosed, and so curative treatment is no longer possible.7-12 People diagnosed early in the course of the disease have the greatest chance of cure. 8 13-16
For people with localised disease, the 5-year survival is ~50% (70% if the tumour is surgically resected). However survival drops to 15% for those with locally advanced disease and to only 3% if distant metastases are present at the time of diagnosis.17 Therefore, earlier diagnosis, combined with timely appropriate cancer care, has the potential to improve survival outcomes for people with lung cancer.
Inequalities in lung cancer incidence and mortality in NZ
Lung cancer has a disproportionate impact on Māori and Pacific peoples,18-22 and it is a source of increasing health inequality between ethnic groups in NZ.19 20
Māori are not only more likely to develop lung cancer than non-Māori, but once they have it, they are more likely to die from it.19 23 24 The higher case-fatality ratio for Māori suggests that there may be differences between Māori and non-Māori in the stage of disease at diagnosis and/or differences in the health care received.19-21
The situation is similar for Pacific peoples. Pacific men are both more likely to develop lung cancer and to die from it than the general population.25 Although Pacific women are not more likely to develop lung cancer, once they have it, those aged >65yrs are more likely to die from it.25
Lung cancer incidence and mortality increases with age.26 About 70% of people with lung cancer are aged >65yrs.26
There is also a strong association between lung cancer and socioeconomic deprivation. Those living in the most deprived socioeconomic areas (NZDep score 9-10) have over twice the incidence and mortality rates from lung cancer of those in the least deprived areas (NZDep 1-2).26
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Lung Cancer Research Project
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Development & Funding
This 3-year project is funded by a Health Research Council District Health Board New Zealand (HRC-DHBNZ) Grant.
A Request for Proposals for a National Cancer Research Proposal: Improving Detection and Management of Services in Primary Care for People with Cancer, funded by District Health Board NZ and administered by the Health Research Council, was released in 2008. The aim of the research was to identify barriers to quality cancer care and describe best practice solutions to inform future service delivery models in primary care for those with cancer, in order to improve health outcomes and reduce inequalities.
In response to the Request for Proposals, the research project “Identification of Barriers to the Early Diagnosis and Management of People with Lung Cancer in Primary Care and Description of Best Practice Solutions” was developed by the Northern Cancer Network (Northern DHB Support Agency) in collaboration with other stakeholders. Ethical approval for the study was obtained from the Northern X
Ethics Committee.
Previous Research
The current research project builds on findings of a previous audit of the secondary care management of lung cancer in the Auckland-Northland region.27-30 This study documented the lung cancer patient pathway from initial presentation to secondary care until the first anticancer treatment or a decision for support care.
It indicated late presentation of people with lung cancer to secondary care, suggesting barriers (to or within primary care or at the primary-secondary interface) to optimal cancer care especially for Māori and Pacific peoples.
The most common entry route into secondary care was via Emergency Department (35%), rather than via General Practitioner referral to a respiratory specialist (28%), especially amongst Pacific cases; and ~65% of all cases had either locally advanced or metastatic disease at diagnosis.27 29
In addition, a higher proportion of Māori and Pacific cases did not attend appointments (DNAs) and declined recommended management; and relatively fewer Māori cases (after adjustment for tumour stage and other factors) received potentially curative treatment.30 The reasons for these findings could not be determined in a retrospective audit and require further assessment.
The current project assesses the lung cancer pathway immediately preceding that in the previous secondary care study. It examines the pathway from first presentation to health care services up until diagnosis, particularly focussing on the pathway within primary care and at the primary-secondary interface until the first specialist appointment (FSA).
The current project aims to:
- Identify barriers to, within, primary care and at the primary-secondary care interface to timely diagnosis and appropriate initial cancer care for people with lung cancer.
- Develop a framework for the assessment of best practice and key performance indicators.
- Develop recommendations for service change to reduce these barriers.
In addition, the project aims to provide baseline data for the implementation and evaluation of new national referral guidelines for suspected cancer within primary care.31
The research involves a mixed methods design and a multi-phased approach.
It involves several components:
- Comprehensive national and international literature review
- Clinical audit to document the lung cancer pathway within primary care to the first specialist appointment and within secondary care to diagnosis.
- Patient interviews and focus groups to explore possible barriers within the relevant section of the lung cancer pathway.
- GP survey and focus groups to assess possible barriers from the GP perspective.
- National stocktake of relevant successful services in the relevant section of the cancer pathway.
- Development of an assessment tool to assess the quality of care and best practice within the relevant section of the lung cancer pathway, and key performance indicators for ongoing monitoring and evaluation of the quality of care.
- Development of recommendations for service change based on best practice solutions.
- Economic evaluation of the recommendation package.
Click on each component for more details and for the findings (as they become available).
The project is comprised of three phases: the preparatory phase, the research phase and the assessment and recommendation phase. Each phase roughly corresponds to each year of the study.
An Expert Advisory Group (EAG) comprising key members of stakeholder groups has been established to oversee and facilitate the research.
An Inequalities Team (IT) comprising Maori and Pacific representatives has been established to guide the inequalities aspects of the project, to provide a link between the project team and Maori and Pacific peoples, and to enable Maori perspectives to be incorporated into the project. Throughout the project the IT will apply the Inequalities Assessment Tools to ensure an ongoing project focus on reducing inequalities.
Mixed methods design
Access to cancer care is multidimensional and involves availability, physical accessibility, affordability, and acceptability of services; and these may vary for different population sub-groups.32 Inequalities of access are not only reflected in differential rates of specialist referral and treatment and in the timeliness of diagnosis and treatment, but also in the differential experience of care, such as differences in the type, appropriateness and quality of the care received.19 Therefore disparities in access to healthcare cannot be adequately assessed by quantitative measures alone, and a mixed methods design is being used for the project.
Dissemination of findings
- Electronic workbook: To facilitate transfer of knowledge, all aspects of the project will be detailed on this web-site so as to form an electronic ‘workbook’. However best practice can not simply be transferred from one setting to another, best practice recommendations need to be contextualised to the local setting. Also the process of developing knowledge through the interaction of various professional groups is vitally important. It is therefore necessary to transfer both process knowledge (how best practice was developed) and product knowledge (the description of best practice).33 The workbook will attempt to transfer both of these types of knowledge to facilitate implementation of the study findings in other regions.
- Meetings: At the end of the project, meetings will be held in various venues in the Auckland and Lakes regions. Some of these meetings will be for health providers, whereas others will be for people with lung cancer, their family/whanau and the wider community. All stakeholders and anyone who has participated in the interviews and focus groups will be invited to a meeting and offered a summarised report.
- Journal articles: It is likely that the findings from this project will be published in peer reviewed journals.
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Grant approval (verbal) for the 3-year project was received in May 2009. The study commenced on 2nd June 2009 and the contract was finalized on 22nd June 2009. A table indicating the estimated timelines of the project is attached below.
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- Ethical Approval for the first phase of the project: December 2008
- Grant Approval (verbal): May 2009
- Commencement of the project: 2nd June 2009 (literature review commenced)
- Tikanga process: Hikoi to Rotorua 26th-27th August 2009: a delegation from the research team, led by kaumatua and kuia travelled to Rotorua to present the research project to Lakes DHB Iwi Organisations such as Te Arawa (Rotorua). The research team found the experience extremely worthwhile and felt that considerable good will resulted from the trip.
Powhiri 1st October 2009: the project was officially launched with a Powhiri at Te Whetu Tawera Marae, Auckland Hospital. The launch was well attended.
- Inequalities Assessment Tools Workshop, presented by Dr Fiona Cram from Wellington was held on 1st and 2nd October 2009 for the Inequalities Team, and other members of the research team and members of the Maori Leadership Group. The Inequalities Team will apply the Inequality Assessment Tools throughout the project to ensure an ongoing project focus on the reduction of inequalities in lung cancer care.
- First Inequalities Team Meeting was held on the 2nd October 2009.
- First Expert Advisory Group Meeting was held on the 14th October 2009.
- Literature Review was submitted to the HRC on the 14th October 2009.\
- Application for the second phase ethical approval: submitted 18th November 2009.
- Second Inequalities Team Meeting was held on the 28th November 2009
- Second Expert Advisory Group Meeting was held on the 3rd December 2009.
Maori Consultation & Engagement Process
Summary of the Engagement Process of Maori into the HRC_DHBNZ Lung Cancer Research Proposal (November 2009)
Gary Thompson, Inequalities Projects Manager, Northern Cancer Network
Consultation
The experience for Maori through this process has not been without challenge. There have been hurdles but also many highlights. But there can be no doubt that a rigorous process of consultation and participation has taken occurred.
There is strong support from Maori both in the Northern Region and the Lakes District for this research to go forward. And there is confidence that the right mechanisms are in place to ensure that whanau and their cultural needs will be met.
The following is a brief review of the key points.
Phase 1: Expression of Interest
- A presentation of the EOI was made to the Maori Leadership Group of the Northern Cancer Network in November 2008. The advice provided included, consulting with Maori academics and research experts
- The EOI was reviewed by Dr Papaarangi Reid and Dr Elana Curtis who endorsed the concerns raised by the MLG and made a number of recommendations
- One of which was to add a Maori researcher to the Expert Advisory Group
- An invitation was made to Dr Matire Harwood to join the Expert Advisory Group and the Inequalities Team
which she accepted
Phase 2: Rural add-on
5. Because of the HRC request to add a rural component to the research, wider consultation
with Maori was required.
6. Members of the research team meet A Kanohi with Phyllis Tangitu
7. A presentation made to Te Roopu Hauora o Te Arawa and Ngati Tuwharetoa
8. Confirmation of the Inequalities Team members, Matire Harwood (Tamaki Healthcare PHO),
Sandra Mullineaux (Procare Ltd), Phyllis Tangitu (GM Maori Lakes DHB) and Gary Thompson
(Northern Cancer Network)
9. There was a review of Rural Add-on component by Maori Leadership Group following the HRC
approval of the application.
10. The Maori Leadership Group expressed disappointment at the exclusion of Te Tai Tokerau as the
rural component.
11. MLG initiated enquiries to the Research Team, the Northern Cancer Network and HRC. An
explanation letter was circulated and while accepted by the Maori Leadership Group Northland
members and others remain disappointed.
Background
In early 2008 the Northern Cancer Network worked with Northern Region Maori to establish a Maori Leadership Group. The key goal was to establish a partnership and participation mechanism between the Northern Cancer Network and Maori.
With the support and leadership of the MaPO and Northern GM’s Maori, hui were called to formalise the relationship between Maori and the Northern Cancer Network. The Maori Leadership Group (MLG) agreed Terms of Reference in October 2008.
Key participants included Tainui MaPO, Tihi Ora o Ngati Whatua MaPO and Te Tai Tokerau MaPO, GM’s Maori Northern Region, and Maori Health Providers. It also includes Cancer Care service providers from Waitemata, Auckland and Counties Manukau DHB’s. Maori Community Cancer Care Coordinator services, palliative care representative and Primary Health Organisations Maori managers are also represented.
Kaumatua and kuia provide tikanga leadership and Maori consumers provide the reality perspective.
HRC_DHBNZ Expression of Interest
The first draft of the expression of interest was presented to the Maori Leadership in November 2008. Members identified cultural and tikanga deficiency within the application and made recommendation to address them.
The authors were directed to seek advice from Maori researchers and academics. Dr Elana Curtis and Dr Papaarangi Reid were approached to review the application. Their recommendations were followed and incorporated into the draft.
The December meeting of the Maori Leadership Group approved the final draft expression of interest.
Additional Consultation
The EOI was provisionally accepted, however a rural aspect with another Regional Network and DHB needed to be added.
The rural add-on required wider Maori consultation. Face to face meetings were held with Lakes GM Maori and Lakes DHB clinical staff. A presentation was made to the Lakes DHB Manawhenua groups, Te Hauora o Te Arawa and Ngati Tuwharetoa and approval was given.
In August of 2009 a delegation travelled to Rotorua to present the kaupapa A Kanohi to Te Arawa and Ngati Tuwharetoa. The Ngati Tuwharetoa leg was cancel at the last minute due to the passing of a prominent Ngati Tuwharetoa rangatira in Taupo. However the Te Arawa hui was a great success.
The delegation was led by Matua Pita Pou Ngati Whatua, Whaea Erana Poulsen Ngapuhi and Miria Andrews Tainui. Key members of the research team, network managers and the inequalities team were also in attendance.
Powhiri
Kaumatua advised that the correct tikanga would be to powhiri the research kaupapa and launch the project with karakia. The powhiri was held at Tarewa Whetu Marae at Auckland Hospital on 1 October 2009.
Consultation Schedule
The following is a schedule of individuals and organisations that were consulted during the development of the research project. The A Kanohi (face to face) consultations were conducted by Gary Thompson Inequalities Projects Manager Northern Cancer Network.
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MLG – Maori Leadership Group meetings
A Kanohi – Face to face consultation
A Waha – presentation made by someone other than the research team.
References
1. New Zealand Health Information Service. Cancer Patient Survival Covering the Period 1994 to 2003. Government Press, Wellington 2006.
2. Population Health Division. The health of the people of New South Wales - Report of the Chief Health Officer, 2006.
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6. Cancer Research Society. Lung cancer survival statistics. Cancer Research UK. 2007.
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18. Robson B, Purdie G, Cormack D. Unequal impact: Maori and non-Maori cancer statistics 1996-2001. Ministry of Health, Government Press, Wellington, 2006.
19. Cormack D, Robson B, Purdie G, Ratima M, Brown R. Access to cancer services for Maori: A Report prepared for the Ministry of Health, Wellington School of Medicine and Health Sciences, 2005.
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24. New Zealand Health Information Service. Mortality and Demographic Data 2002 and 2003. Government Press, Wellington 2006.
25. Ministry of Health and Ministry of Pacific Island Affairs. Tupu Ola Moui, Pacific Health Chart Book, Wellington, 2004.
26. Ministry of Health. Cancer in New Zealand: Trends and Projections: Lung Cancer. 2002.
27. Stevens W, Stevens G, Kolbe J, Cox B. Lung cancer in New Zealand: Patterns of secondary care and implications for survival. J Thorac Oncol 2007;2(6):481-93.
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31. New Zealand Guidelines Group. Suspected cancer in primary care: Guidance for referral and reducing disparities. Consultation Draft, NZGG, 2008.
32. Gulliford M, Hughes D, Figeroa-Munoz J, Hudson M, Connell P, Morgan M. Access to health care: Report of a scoping exercise for the National Co-ordinating Centre for NHS Service Delivery and Organisation R & D (NCCSDO). The Public Health and Health Services Research Group, Department of Public Health Sciences, King’s College, London, 2001.
33. Newell S, Edelman L, Scarbrough H, Swan J, Bresnen M. ‘Best practice’ development and transfer in the NHS: the importance of process as well as product knowledge. Health Services Management Research 2003;16(1):1-12.
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35. Rotorua District Council. Rotorua District Older Persons Profile Rotorua, NZ, 2007.
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