Transcript CTNZ, Annual Meeting 30th July 2009

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
Assessment of Barriers to the Early Diagnosis of Lung Cancer
Within Primary Care and Description of Best Practice Solutions
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
Background
Lung cancer in NZ
• Leading cause of cancer-related death
– 19% of all deaths due to cancer in 20081
• 1864 new registrations; 1634 deaths in 20081
• 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
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- Maori1
• Not totally accounted for by variation in co-morbidity, socioeconomic 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
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
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
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
The Project
• Significant support from 1° and 2 ° care sectors
Principal Stakeholders:
Northern Cancer Network
Midland Cancer Network
Auckland District Health Board
Counties Manukau District Health Board
Lakes District Health Board
Waitemata District Health Board
ProCare Health Limited
Total Healthcare Otara
Tamaki PHO
Rotorua Area Primary Health Services
Pinnacle GP Network
Maori Health, Lakes District Health Board
Maori Leadership Group (NCN)
Northern Region DHBs Maori General Managers Group
New Zealand Guidelines Group
The University of Auckland
• 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
Clinical Audit
• 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
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
Clinical Audit
• 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
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
Clinical Audit
• 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
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
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
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
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
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
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
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 1st 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
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
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
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
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
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
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
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
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
Summary
• 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
Funded by the Health Research Council of New Zealand and District Health Boards New Zealand