1. Assessment of Barriers to the Early Diagnosis of Lung Cancer Within Primary Care and Description of Best Practice Solutions Principal Investigator: Dr Wendy Stevens, Northern Cancer Network Presented by: Dr Denise Aitken, Lakes District Health Board Melissa Murray, Cancer Trials New Zealand, University of Auckland Funded by the Health Research Council of New Zealand and District Health Boards New Zealand

2. Overview Today's presentation: – Aims and processes of the project – Key findings so far Results and conclusions not yet available – Due June 2012 Funded by the Health Research Council of New Zealand and District Health Boards New Zealand Assessment of Barriers to the Early Diagnosis of Lung Cancer Within Primary Care and Description of Best Practice Solutions

3. Background Lung cancer in NZ Leading cause of cancer-related death – 19% of all deaths due to cancer in 2008 1 1864 new registrations; 1634 deaths in 2008 1 Lower 5 year survival rates than Australia, the USA, Canada – attributed to differences in management 1 Ministry of Health. 2011. Cancer: New registrations and deaths 2008. Wellington: Ministry of Health Funded by the Health Research Council of New Zealand and District Health Boards New Zealand Assessment of Barriers to the Early Diagnosis of Lung Cancer Within Primary Care and Description of Best Practice Solutions

4. Background Significant Ethnic Disparities Maori have higher incidence and mortality -age-standardised rates for Maori for both registration and death in 2008 greater than 3 x those in Non- Maori 1 Not totally accounted for by variation in co-morbidity, socio- economic status and treatment acceptance Lower early stage disease at diagnosis; less likely to undergo curative treatment, longer journey times And Regional Disparities Rotorua has the highest rate of lung cancer in NZ Funded by the Health Research Council of New Zealand and District Health Boards New Zealand Assessment of Barriers to the Early Diagnosis of Lung Cancer Within Primary Care and Description of Best Practice Solutions

5. The Project Overall Aim To develop recommendations for service change to facilitate the early diagnosis of lung cancer and improve care from presentation until diagnosis for patients with lung cancer, with a particular focus on Maori and Pacific peoples. Funded by the Health Research Council of New Zealand and District Health Boards New Zealand Assessment of Barriers to the Early Diagnosis of Lung Cancer Within Primary Care and Description of Best Practice Solutions

6. The Project 3 year project, funded by HRC & DHBNZ Research Phase - Mixed methods design:  Literature Review*  Clinical Audit  National Stock-take of Successful Services (1° & 2° care)  GP Survey  Practice Survey  Focus Groups - GPs  Patient Interviews  Focus Groups - patients & whanau *available online at: www.northerncancernetwork.org.nz/Research/LungCancerResearchProject/ Funded by the Health Research Council of New Zealand and District Health Boards New Zealand Assessment of Barriers to the Early Diagnosis of Lung Cancer Within Primary Care and Description of Best Practice Solutions

7. The Project Assessment Phase (current stage of the project)  Development of recommendations package  Development of a best practice assessment tool  Development of KPIs  Economic evaluation of the recommendations package Funded by the Health Research Council of New Zealand and District Health Boards New Zealand Assessment of Barriers to the Early Diagnosis of Lung Cancer Within Primary Care and Description of Best Practice Solutions

8. The Project Significant support from 1° and 2 ° care sectors Principal Stakeholders: Governance: Expert Advisory Group Inequalities Team Funded by the Health Research Council of New Zealand and District Health Boards New Zealand Assessment of Barriers to the Early Diagnosis of Lung Cancer Within Primary Care and Description of Best Practice Solutions

9. Clinical Audit Funded by the Health Research Council of New Zealand and District Health Boards New Zealand Assessment of Barriers to the Early Diagnosis of Lung Cancer Within Primary Care and Description of Best Practice Solutions Aim To document the clinical pathway from initial presentation to healthcare services until diagnosis for people with lung cancer in the Auckland and Lakes regions. Methods – Retrospective audit of all cases from NZCR diagnosed in 2008 the were registered pre-diagnosis with one of the participating primary care organisations – Data collected from both primary and secondary care – Primary care data collected by local GP – Data collected from presentation to primary care until diagnosis

10. Clinical Audit Funded by the Health Research Council of New Zealand and District Health Boards New Zealand Assessment of Barriers to the Early Diagnosis of Lung Cancer Within Primary Care and Description of Best Practice Solutions Results – 272 cases (214 Auckland; 58 Lakes) – Ethnicity: 61% European; 21% Maori; 9% Pacific and 9% Asian. – 76% initially presented to primary care; 24% presented directly to secondary care 65% of cases presenting to primary care had a CXR ordered by GP. Spirometry was rarely recorded in primary care. 34% of cases presenting to primary care were referred to a respiratory specialist and 30% were referred for an acute admission 14% of all cases self-presented to ED – Median time from presentation to primary care to diagnosis = 65 days 25% of cases presenting to primary care took greater than 4 months to diagnosis For cases presenting directly to secondary care the median time was 17 days Variation by stage: Stage I/II 100 days; stage III 68 days and stage IV 49 days

11. Clinical Audit Funded by the Health Research Council of New Zealand and District Health Boards New Zealand Assessment of Barriers to the Early Diagnosis of Lung Cancer Within Primary Care and Description of Best Practice Solutions Key findings – Many patients present to secondary care acutely – only a minority are referred from GP to respiratory specialist – Wide variations in transit times to diagnosis – Patients with potentially curable disease took much longer to be diagnosed than those with advanced disease – especially if they were outpatients when first seen by secondary care

12. National Stock-take Aim to identify what, if any, services had been initiated within the NZ healthcare system that could potentially improve the clinical journey for people with suspected lung cancer from initial presentation to health care services until diagnosis Funded by the Health Research Council of New Zealand and District Health Boards New Zealand Assessment of Barriers to the Early Diagnosis of Lung Cancer Within Primary Care and Description of Best Practice Solutions

13. National Stock-take Methods 1.Development of the survey – Designed by the EAG and Survey Research Unit, University of Auckland – Requested information on services not necessarily specifically for people with lung cancer but relevant to such patients – Separate surveys for primary and secondary care – Focused on innovative services or initiatives that operate prior to diagnosis, especially those targeted to Maori, Pacific and rural patients – Requested feedback on whether the services worked/ did not worked and possible reasons for the success or failure Funded by the Health Research Council of New Zealand and District Health Boards New Zealand Assessment of Barriers to the Early Diagnosis of Lung Cancer Within Primary Care and Description of Best Practice Solutions

14. National Stock-take Methods 2.Distribution: –All 20 DHBs Nationwide –All 4 cancer networks –All 79 PHOs at the time of the survey (as per DHBNZ) + the 2 stakeholder GP organisations (RAPHS and Pinnacle GP Network) –Maori & Pacific health and social services identified by the IT –Hard copies posted + details of link to electronic version available –Responses in brochure and email format were also accepted Funded by the Health Research Council of New Zealand and District Health Boards New Zealand Assessment of Barriers to the Early Diagnosis of Lung Cancer Within Primary Care and Description of Best Practice Solutions

15. National Stock-take Results – 100% response rate from 2° care (all DHBs) – 1° care less successful  PHO amalgamations from 79 to 47 during the course of the survey  introduced face-to-face meetings  Overall responses received from 50 primary care organisations:  31 from PHOs - covering 20 out of the 47 PHOs (43%)  19 from Maori and Pacific health and social services Funded by the Health Research Council of New Zealand and District Health Boards New Zealand Assessment of Barriers to the Early Diagnosis of Lung Cancer Within Primary Care and Description of Best Practice Solutions

16. National Stock-take Key Findings – Primary care Initiatives – Much of the innovation occurring within primary care was reported by Maori and Pacific organisations. – Key themes arising from review of innovative services: – The People e.g. Aunties and community health care workers, Kaumatua and kuia (respected elders) – Cultural competency – Kaupapa and tikanga - traditional values and practices - support communication and relationship building. Also the use of traditional healing and locations such as wharenui and Pacific churches as entry sites into health services – Whanau ora (family wellbeing) approaches – providing integrated and holistic services – Improving health literacy – empowering people to manage their health – Improving access to health services: reducing costs, travel and providing satellite clinics – Whanaungatanga and whakapapa (tribal connectedness) – providing connections to population groups in the community Funded by the Health Research Council of New Zealand and District Health Boards New Zealand Assessment of Barriers to the Early Diagnosis of Lung Cancer Within Primary Care and Description of Best Practice Solutions

17. National Stock-take Key Findings – Secondary care Initiatives – CT scan prior to FSA: many DHBs were instigating dedicated CT slot for patients with suspected lung cancer &/or direct GP/radiology referral to CT following suspicious CXR – ‘Fast-track’ lung cancer clinic: dedicated clinic to lung cancer with expedited investigations, being undertaken by 4 DHBs – Care-coordinators (clinical nurse specialists, patient navigators) reported by 9 DHBs. One of these reported an audit of median time from 1 st respiratory appointment to referral to another speciality was reduced when a lung cancer clinical nurse specialist was available. – Lack of information resources: no DHBs reported lung cancer information resources specifically targeted to Maori and only 3 DHBs reported providing specialist GP education sessions by respiratory physicians. – Kaupapa Maori services were only reported by some DHBs. Funded by the Health Research Council of New Zealand and District Health Boards New Zealand Assessment of Barriers to the Early Diagnosis of Lung Cancer Within Primary Care and Description of Best Practice Solutions

18. The GP Perspective Aim To identify barriers to the early diagnosis of lung cancer from the General Practitioner (GP) perspective and their suggestions to reduce these barriers. Methods – Practice Survey: mail out and electronic survey to all four participating primary care organisations across Auckland, Rotorua, and Taupo – GP Survey: mail out and electronic survey to THO and RAPHS – GP Focus Groups: facilitated by the Survey Research Unit, University of Auckland with ProCare and Pinnacle Funded by the Health Research Council of New Zealand and District Health Boards New Zealand Assessment of Barriers to the Early Diagnosis of Lung Cancer Within Primary Care and Description of Best Practice Solutions

19. The GP Perspective Results – Practice Survey: 139 replies (82%) – GP Survey: 91 replies (89%) – GP Focus Groups: 2 in Auckland and 1 in Taupo, total 33 GPs participating Key Findings – GPs see a new lung ca patient only every 12-18 months but have many patients with similar symptoms – Access to radiology – Perception of delays in getting to 2° care – Communication with 2° care – Fatalistic attitudes to lung cancer treatment and outcomes Funded by the Health Research Council of New Zealand and District Health Boards New Zealand Assessment of Barriers to the Early Diagnosis of Lung Cancer Within Primary Care and Description of Best Practice Solutions

20. The Patient Perspective Aim To identify barriers to the early diagnosis of lung cancer from the patient perspective and their suggestions to reduce these barriers. Methods 1.Patient Interviews: patients with suspected lung cancer (real time) 2.Patient Focus Groups: with patients and their family members/ whanau and support people who had a diagnosis of lung cancer within the last 2 years Funded by the Health Research Council of New Zealand and District Health Boards New Zealand Assessment of Barriers to the Early Diagnosis of Lung Cancer Within Primary Care and Description of Best Practice Solutions

21. The Patient Perspective Results 1.Patient interviews: 19 interviews undertaken – 12 (63%) Auckland (ADHB and CMDHB) and 7 (37%) Rotorua – Ethnicity: 11 (58%) European; 5 (26%) Maori; 1 (5%) Pacific Island; 1 (5%) Asian and 1 (5%) Indian – Average age = 68 (range 48 – 84) – 18 (95%) current or previous smokers – 8 (42%) reported self presentation to ED; 11 referred by GP 2.Patient focus groups: 20 participants – One focus group held in each region:  Auckland – 4 patients + 4 family/whanau/support people  Rotorua - 8 patients + 4 family/whanau/support people Funded by the Health Research Council of New Zealand and District Health Boards New Zealand Assessment of Barriers to the Early Diagnosis of Lung Cancer Within Primary Care and Description of Best Practice Solutions

22. The Patient Perspective Key Findings: Patient Interviews – Fatalistic Attitudes & Fear  Participants expected that as a smoker, ill-health was the norm  Reported fear and avoidance as their symptoms may be cancer and that they would be advised to stop smoking – Health literacy  30% of participants reported either not having experienced any symptoms or recognised any symptoms as serious/necessitating seeking help prior to presentation  Participants reported minimising symptoms and uncertainty about the meaning of symptoms Funded by the Health Research Council of New Zealand and District Health Boards New Zealand Assessment of Barriers to the Early Diagnosis of Lung Cancer Within Primary Care and Description of Best Practice Solutions

23. The Patient Perspective Key Findings: Patient Interviews – GP/Patient relationship  Nearly all participants reported a strong preference for seeing their own GP & that this was important for trust and continuity of care.  Belief in their GPs expertise contributed to not advocating for further investigation. – GP Awareness of lung cancer  75% of participants had consulted their GP in the few weeks prior to presenting to ED and many had presented with similar symptoms over a period of several months or more. Funded by the Health Research Council of New Zealand and District Health Boards New Zealand Assessment of Barriers to the Early Diagnosis of Lung Cancer Within Primary Care and Description of Best Practice Solutions

24. The Patient Perspective Key Findings: Patient Focus Groups – Suggested Improved communication between primary and secondary care interface – Suggested introduction of screening CXR for smokers – Need for a public education campaign – increase knowledge of symptoms and decrease misperceptions and fears of lung cancer – Improved GP awareness and education Funded by the Health Research Council of New Zealand and District Health Boards New Zealand Assessment of Barriers to the Early Diagnosis of Lung Cancer Within Primary Care and Description of Best Practice Solutions

25. Study Benefits Evidence-based service change recommendations Significant buy-in of primary and secondary health care sectors, clinicians, GPs and patients Specialist Inequalities Team to lead culturally competent research methods and ethnic inequalities analysis of data collected Formation of new collaborations across primary and secondary sectors, and Northern and Mid-Central regions Funded by the Health Research Council of New Zealand and District Health Boards New Zealand Assessment of Barriers to the Early Diagnosis of Lung Cancer Within Primary Care and Description of Best Practice Solutions

26. Summary Funded by the Health Research Council of New Zealand and District Health Boards New Zealand Assessment of Barriers to the Early Diagnosis of Lung Cancer Within Primary Care and Description of Best Practice Solutions Multiple methods to collect a vast amount of data to allow for evidence-based recommendations development. Only possible due to the ongoing efforts of the research team and our collaborators. Look out for the release of the recommendations next year! Thank you