International Cancer Benchmarking Partnership Wales Newsletter

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Piers Hodges
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partners in the third sector to provide funding for Module 4 The evidence emerging is challenging some of the early assumptions, particularly around population awareness.

1 Issue International Cancer Benchmarking Partnership Wales Newsletter 2012 has been a very busy and rewarding year for the Welsh ICBP leads and clinical advisers with: further analyses on the impact of stage at diagnosis and treatment from Module 1 analysis of the Module 2 data on awareness of cancer symptoms completion of the Module 3 fieldwork on GP awareness and attitudes work with our partners in the third sector to provide funding for Module 4 The evidence emerging is challenging some of the early assumptions, particularly around population awareness. This also seems to apply to analyses on treatment and outcomes. Further detail is provided in the following sections and links to all publications are available on the ICBP Wales website at These ICBP findings are well timed to feed into Local Health Board discussions on improving clinical outcomes and patient experience following the publication, by the Welsh Government, of Together for Health Cancer Delivery Plan (CDP) last year. wales.gov.uk/topics/health/publications/health/strategies/ cancer/?skip=1&lang=en. Evidence from the ICBP was also included in the CDP s supplementary Technical Report. INSIDE THIS ISSUE; Pages 1, Welcome Page Feedback & Module 1 Page Module 1 Page Modules 1& 2 Page Module 2 Page Modules 3&4 Page Module 4 FUNDING & SUPPORT FROM; The ICBP team recognise the need to cascade information and this Newsletter summarises how this is being achieved for each module. We are delighted to have feedback from colleagues working with us on the ICBP evidence in this issue.

The Welsh ICBP team has seen changes, with Dr Bridget Gwynne joining the group as the Primary Care Lead for the South Wales Cancer Network, and Dr Ceri White representing WCISU following Dr John

2 The Welsh ICBP team has seen changes, with Dr Bridget Gwynne joining the group as the Primary Care Lead for the South Wales Cancer Network, and Dr Ceri White representing WCISU following Dr John Steward s retirement. Dr Iain Robbé has also left Public Health Wales to take up a post in Newfoundland. John and Iain provided important advice and support and have been key to taking forward the ICBP in Wales, and we wish them both every success for the future. Participation of NHS Wales in the ICBP would not have been possible without support from the Welsh Government (Modules 2 and 3), Tenovus (Module 3) and Cancer Research Wales (Module 4). I must also acknowledge the additional and ongoing advice from Welsh Government colleagues Dr Karen Gully, Senior Medical Officer, and Chris Roberts, Research Lead, and also Professor Malcolm Lewis, Sub Dean and Director of General Practice Education, Cardiff University. If you are not familiar with the ICBP, the objectives are summarised below. The ICBP is focussed on 5 areas of research (modules) which cover various aspects of patientrelated delays and system-related delays. Each module considers different aspects that contribute to survival in breast, colorectal, lung and ovarian cancer. These cancers were selected as covering the major common cancers with ovarian cancer representing a more complex care pathway. In all cases the objective is to identify possible reasons for differences in survival observed between partners. Module 1: Epidemiology incidence, mortality, survival, stage and treatment Module 2: Population awareness and beliefs Module 3: Beliefs, behaviours and systems in primary care Module 4: Root cause of diagnosis and treatment delays Module 5: Treatment, co-morbidities and other factors For further detail, the UK ICBP web site can be viewed at cancer-info/spotcancerearly/icbp/ Wales is participating in Modules 1 to 4. Dr Jane Hanson Lead for Wales on the ICBP Board and Head of the Cancer NSAG Core Team 2

3 IMPACT OF ICBP: FEEDBACK I'm delighted to have this opportunity to congratulate the Welsh ICBP on the work described in this newsletter. I'm also pleased to have had the recent opportunity to work with ICBP, Public Health Wales and the Cancer NSAG Core Team on the Wales Lung Cancer Significant Event Audit and I'm looking forward to similar collaborations in the future. - Professor Malcolm Lewis, Sub Dean and Director of General Practice Education, Cardiff University The Welsh Government have set up a Cancer Implementation Group (CIG) to oversee delivery of the Cancer Delivery Plan, and included in this is recognition of the need for international benchmarking. Participation in the ICBP has highlighted the importance of having high quality data to inform service change. The findings of Module 4 will be particularly relevant to our work to improve our understanding of the patient pathway from referral to treatment and identify where system delays occur. - Dr Tom Crosby, Chair of the CIG Information sub group, and South Wales Cancer Network Medical Director The ICBP work themes will inform the Cancer Implementation Group s work to improve outcomes for cancer patients in Wales. I am currently working closely with Professor Neal, the Welsh lead for Module 3, on ways to achieve earlier diagnosis. - Professor Matthew Makin, Chief of Staff for Cancer services at the Betsi Cadwaladr University Health Board, and Chair of the CIG Early Diagnosis sub group MODULE 1: EPIDEMIOLOGY This module involves an analysis of the population based cancer registry data from the twelve jurisdictions collaborating in the ICBP project. Welsh data was submitted in April 2010 and the first results were published in the Lancet in January Work in 2011 consisted of an examination of the effect of stage at diagnosis on survival in order to establish the likely cause of lower survival rates. Five papers were to be produced for this section of the module, the first paper making recommendations for how stage data should be recorded, stored and processed to compare future population based international comparisons along with an algorithm to convert between TNM and a localised, regional, distant categorisation system for stage at diagnosis. This paper was published in the International Journal of Cancer in June Four site specific cancer papers have also been produced and have been submitted to relevant journals. At present, Stage at diagnosis and ovarian cancer survival: Evidence from the International Cancer Benchmarking Partnership has been published in Gynaecology Oncology in October

4 MODULE 1: EPIDEMIOLOGY It was found that differences in stage at diagnosis partly explain international variation in ovarian cancer survival, and a more adverse stage distribution contributes to comparatively low survival in Denmark. However, differences in survival also exist within each stage, with lower survival for advanced disease in the UK, suggesting unequal access to optimal treatment. FURTHER INFORMATION Ceri White Module 1 Lead Principal Statistician Welsh Cancer Intelligence and Surveillance Unit Public Health Wales NHS Trust 13th Floor Brunel House The final stage of this module is to examine differences in treatment between jurisdictions to identify whether this can explain differences in survival. Breast cancer treatment data is currently being examined and relevant outputs are being planned in the coming months. The next cancer type to be examined will be lung cancer. Dr Ceri White 2 Fitzalan Road Cardiff CF24 0HA Tel: ceri.white@wales.nhs.uk page.cfm?orgid=242&pid=1670 Welsh Cancer Intelligence and Surveillance Unit PRESENTATIONS: Presentations for Module 1 have been undertaken by the central ICBP team at the recent NCRI Conference. Presentations have also been given at the Breast, Colorectal, Lung and Gynaecological NSAG Sub Groups and at Welsh Government s Cancer Implementation Group. PUBLICATIONS [1] Coleman, MP; Forman, D; Bryant, H; Butler, J; Rachet, B; Maringe, C; Nur, U; Tracey, E; Coory, M; Hatcher, J; et al. ICBP Module 1 Working Group; (2011) Cancer survival in Australia, Canada, Denmark, Norway, Sweden, and the UK, (the International Cancer Benchmarking Partnership): an analysis of population-based cancer registry data. Lancet, 377 (9760). pp [2] Walters, S; Maringe, C; Butler, J; Brierley, JD; Rachet, B; Coleman, MP; (2013) Comparability of stage data in cancer registries in six countries: lessons from the international cancer benchmarking partnership. International Journal of Cancer. 132(3): [3] C; Walters, S; Butler, J; Coleman, MP; Hacker, N; Hanna, L; Mosgaard, BJ; Nordin, A; Rosen, B; Engholm, G; Gjerstorff, ML; Hatcher, J; Johannesen, TB; McGahan, CE; Meechan, D; Middleton, R; Tracey, E; Turner, D; Richards, MA; Rachet, B; ICBP Module 1 Working Group; (2012) Stage at diagnosis and ovarian cancer survival: Evidence from the International Cancer Benchmarking Partnership. Gynecologic oncology, 127 (1). pp

FOCUS ON MODULE 1 LEAD: DR CERI WHITE Ceri White graduated with a Masters Degree in Mathematics in 2000.

He is now the Principal Statistician at the WCISU where he manages a dedicated team of three.

5 FOCUS ON MODULE 1 LEAD: DR CERI WHITE Ceri White graduated with a Masters Degree in Mathematics in He joined the Welsh Cancer Intelligence and Surveillance Unit (WCISU) in 2001 as a statistician and gained a PhD in Small area analysis with cluster analysis as a part time student in He is now the Principal Statistician at the WCISU where he manages a dedicated team of three. The team produce a comprehensive picture of cancer in Wales with regards incidence, mortality, prevalence and survival. Ceri was the chair of the United Kingdom Association of Cancer Registries Quality Assurance subgroup from 2008 to 2009 and co-chair of the Data Quality Assurance and Registration group from 2009 to MODULE 2: AWARENESS AND BELIEFS PROGRESS UPDATE: The ICBP Module 2 cancer awareness study has made excellent progress and we now have a large international dataset that benchmarks awareness and beliefs about cancer in nearly 20,000 adults aged over 50 across the six partner countries. Two papers have been published, reporting the development of the Awareness and Beliefs about Cancer measure [1] and the results of the international comparisons [2]. Compared to other countries in the partnership, people in England, Northern Ireland and Wales reported more barriers to early presentation including worry about wasting the doctor s time and embarrassment, and had lower awareness that the risk of cancer increases with age. These factors may partly explain why the UK has a lower cancer survival rate than other developed countries. 5

6 MODULE 2: AWARENESS AND BELIEFS In Wales, worry about wasting the doctor s time and embarrassment were barriers for over 2000 adults who were surveyed. Around a third said that worry about wasting the doctor's time would stop them going to the doctor, and 15% said that being too embarrassed would put them off. More than 90% of the Welsh sample were unaware that 70 year olds are most likely to be diagnosed with cancer. Further analysis is being planned to understand the issues specific to Wales, for example whether there are particular groups of people with negative beliefs about cancer. Dr Kate Brain Cochrane Institute of Primary Care & Public Health, Cardiff University FURTHER INFORMATION Dr Kate Brain Module 2 Lead Senior Lecturer Cochrane Institute of Primary Care and Public Health School of Medicine Cardiff University Tel: brainke@cardiff.ac.uk person/dr-katherine-emmabrain PRESENTATIONS: Over the past year, the Welsh ICBP cancer awareness findings have been presented at academic workshops and to a range of local stakeholder groups including the Cancer National Specialist Advisory Groups, Public Health Wales, and Tenovus staff and volunteers. The findings have also been presented at conferences including Cancer Bath Symposium, the European Health Psychology Society, and the NCRI Cancer Conference. PUBLICATIONS: [1] Simon, A.E., Forbes, L.J.L., Boniface, D., Warburton, F., Brain, K.E., Dessaix, A., Donnelly, M., Hayne, K., Hvidberg, L., Lagerlund, M., Peterman, L., Tishelman, C., Vedsted, P., Vigmostad, M.N., Wardle, J., Ramirez, A.J. and the ICBP Module 2 Working Group, ICBP Programme Board and Academic Reference Group. An international measure of awareness and beliefs about cancer: Development and testing of the ABC. BMJ Open. [2] Forbes, L.J.L, Simon, A.E., Warburton, F., Boniface, D., Brain, K.E., Dessaix, A., Donnelly, C., Haynes, K., Hvidberg, L., Lagerlund, M., Lockwood, G., Tishelman, C., Vedsted, P., Vigmostad, M.N., Ramirez, A.J., Wardle, J. and the International Cancer Benchmarking Partnership Module 2 Working Group, International Cancer Benchmarking Partnership Programme Board and the International Cancer Benchmarking Partnership Module 2 Academic Reference Group. Differences in cancer awareness and beliefs between Australia, Canada, Denmark, Norway, Sweden and the UK (the International Cancer Benchmarking Partnership): do they contribute to differences in cancer survival? Brit J Cancer. 6

MODULE 3: BELIEFS, BEHAVIOURS AND SYSTEMS IN PRIMARY CARE The data collection for Module 3 has now been completed, and we would like to thank the 218 GPs in Wales who took part.

7 MODULE 3: BELIEFS, BEHAVIOURS AND SYSTEMS IN PRIMARY CARE The data collection for Module 3 has now been completed, and we would like to thank the 218 GPs in Wales who took part. We were the second of the jurisdictions worldwide to complete the survey. Incentive vouchers which were detailed in our first Newsletter were sent out to respondents at the beginning of December. We will be conducting some local analysis of the Welsh data in the next few months. The main comparative analysis will be undertaken once data collection is complete in all of the jurisdictions in FURTHER INFORMATION Professor Richard Neal Module 3 Lead Professor Richard Neal North Wales Centre for Primary Care Research, Bangor University North Wales Centre for Primary Care Research North Wales Clinical School College of Health & Behavioural Sciences Bangor University Gwenfro Units 4-8 Wrexham Technology Park Wrexham LL13 7YP Tel: r.neal@bangor.ac.uk MODULE 4: ROOT CAUSES OF DIAGNOSIS AND TREATMENT DELAY This has been funded by Cancer Research Wales and we shall begin data collection in May 2013, which will continue for 12 months. With the hypothesis that differences between countries in cancer survival may be partly rooted in differences in time interval from first symptom until diagnosis and treatment, the overall aim of Module 4 is to collect valid international comparable data on time intervals. The specific aims of Module 4 are: 1. To quantify and compare the time interval from onset of first symptoms to start of treatment. The total time interval will be divided into sub-intervals: Patient interval (time from onset of symptoms to first health care professional contact) Diagnostic interval (time from first presentation to health care professional to definitive cancer diagnosis) Treatment interval (time from definitive diagnosis to start of treatment) 7

MODULE 4: ROOT CAUSES OF DIAGNOSIS AND TREATMENT DELAY FURTHER INFORMATION Professor Richard Neal Module 4 Lead North Wales Centre for Primary Care Research North Wales Clinical School College of

8 MODULE 4: ROOT CAUSES OF DIAGNOSIS AND TREATMENT DELAY FURTHER INFORMATION Professor Richard Neal Module 4 Lead North Wales Centre for Primary Care Research North Wales Clinical School College of Health & Behavioural Sciences Bangor University Gwenfro Units 4-8 Wrexham Technology Park 2. To assess and compare the proportion of patients entering the cancer pathway through different routes: screen detected; urgent referrals with a suspicion of cancer; routine/urgent referrals but not specific for the suspicion of cancer; an elective route; emergency presentation; other or unknown routes to diagnosis. Wrexham LL13 7YP Tel: r.neal@bangor.ac.uk 3. Identify time intervals where actions to reduce delays could be focussed. In Wales, as with all the other participating jurisdictions, data will be collected from at least 200 breast, 200 colorectal, 200 ovarian and 200 lung cancer patients, diagnosed around 2-6 months prior to the sampling. They will be invited to complete a questionnaire about their diagnostic journey. On receipt of a patient-completed questionnaire, both the patient s GP and hospital consultant will be asked to complete a questionnaire about their patient s diagnostic journey. Data from these questionnaires will be analysed centrally for international comparisons and locally, within Wales, to provide a detailed description of the diagnostic process. The Module 4 international team is led by Professors Usha Menon (UCL), David Weller (Edinburgh), and Peter Vedsted (Aarhus), with support from Cancer Research UK. Professor Richard Neal North Wales Centre for Primary Care Research, Bangor University For further information and to be kept up to date with publications and progress for each module, please visit the ICBP Wales website at: CANCER NATIONAL SPECIALIST AD- VISORY GROUP CORE TEAM 3rd Floor, 14 Cathedral Road Cardiff, CF11 9LJ Phone: icbp@wales.nhs.uk Issue 3 of the ICBP Wales Newsletter will be available in

Module 2. Dr Anna Gavin Mr Conan Donnelly Dr Michael Donnelly Dr David Donnelly

Module 2. Dr Anna Gavin Mr Conan Donnelly Dr Michael Donnelly Dr David Donnelly Module 2 Dr Anna Gavin Mr Conan Donnelly Dr Michael Donnelly Dr David Donnelly Norway Canada N.Ireland (Alberta, British Columbia, Wales Sweden England Denmark Manitoba and Ontario) Key selection criteria: