Breda Anthony EOPIC Study Co-ordinator University of Dundee

1. EOPICEngaging with Older People and their carers to Develop and Deliver Interventions for the Self-management of Chronic Pain Breda Anthony EOPIC Study Co-ordinator University of Dundee

2. Chronic pain in older adults • Significant chronic pain affects 20% of adults Breivik et al 2007 • Rising to 62% of those over 75 Elliott et al 1999 • Many diseases causing chronic pain increase with age • E.g. arthritis, diabetes • Many risk factors for chronic pain are associated with ageing • E.g. reduced physical activity, co-morbidities, reduced social networks Evenson et al 2002,Peat et al 2004

3. Impact of pain on older adults • Chronic pain is associated with • Poor general health (physical, psychological, social) Smith et al 2001 • Increased mortality Torrance et al 2010 • Increased resource use (carers, NHS, benefits) Maniadakis and Gray 1999 • In older adults chronic pain is • Often under-reported Sofaer-Bennet et al 2007 • More likely to be intense, disabling and need treatment Elliott et al 1999 • Particularly likely to cause isolation, disability and depression Citra et al 2006

4. Managing pain in older adults • 65% of people with chronic pain use prescribed medicines • 40% of are dissatisfied with their treatment Breivik et al 2006 • Particular difficulties with drugs in older adults • More (dangerous) side effects • Polypharmacy, with interactions • Changing physiology • Need to look at non-pharmaceutical management • E.g. self-management, education, CBT • These interventions may not transfer directly to older adults

5. EOPICObjectives • Measure the economic consequences of pain in later life • Investigate the attitudes and approaches adopted by general practitioners, primary care teams, pain clinics and older adults towards pain management in older age • Work with older adults to enhance existing resources and to develop working prototypes of new, innovative materials (e.g. written & audiovisual, including web-based resources) which will provide practical advice & help to older adults living with pain in the community • Explore with older adults acceptable & feasible ways to disseminate and deliver these self-help materials.

6. Economic consequences Estimation of economic consequences of chronic pain using longitudinal British Household Panel Survey data • What is the effect of chronic pain in older age (50+years, but below State Retirement Age) on labour market outcomes? • Does chronic pain affect measures of subjective well-being? • What factors explain differences in subjective well-being, and are they amenable to policy intervention?

7. Data definitions Labour market outcomes • Labour Force Participation • a person is in the labour force if they are in employment or looking for work • Paid Employment • a person is in paid employment if they have a full-time or part-time paid job (i.e. exclude self-employed) • Hourly Earnings • salary/wages of those in paid employment, divided by usual hours of work

8. Data • British Household Panel Survey (2001 and 2006, wave 6 and 11) • Aged 50 years to statutory retirement age (F60, M65) • Definition of chronic pain: • answered “yes” to regularly suffer pain • frequency = daily • Average pain classified as mild, moderate, severe • N = 3,473 (n=833, (24%) reported chronic pain)

9. Summary • Chronic pain is associated with reduced labour force participation and lower probabilities of employment (after adjustment for all potential confounders) • The more severe the pain the greater the effect • What (if anything) then can be done to improve labour market outcomes?

10. Attitudes and Resources • Phase II. Attitudes & approaches to chronic pain management amongst practitioners, older adults & their informal carers, and a comprehensive review of the acceptability and cost-effectiveness of non-pharmaceutical pain management strategies • A survey of practitioners working in pain clinics and GP practices across the UK (n = 301) • Follow up telephone interview with a sample of practitioners (n=60) • Focus groups of older adults attending pain clinics in Aberdeen or Teesside within age cohorts (50-60, 60-70, 70-75, 75+) & their informal carers (n=40) • A literature review of ‘grey’ literature of self help materials for managing chronic pain

11. Survey of practitioners working in pain clinics & GP Practices across the UK (n=301) In total 600 Pain Clinicians recruited Results: 301(50%) questionnaires returned. 219 (73%) Pain Clinicians 82 (27%) GP’s 133(44%) Agreed to telephone interviews • 395 via British Pain Society • 100 GPs from Aberdeenshire through SPCRN • 105 GPs from Teesside through PCRN

12. Survey Findings How do referral rates from GPs to Pain clinics compare for over 65s and under 65s? • On average 31-40 new patients per month referred to each pain clinic because of chronic pain • Of these 11-20 of these referrals were patients over 65 • So, over 65s make up around half of new referrals to pain clinics

13. TelephoneFollow-up • To explore issues from questionnaire and attitudes and beliefs regarding pain management in older adults and any current self management strategies. • Response rate 60/63(95.2%)

14. TelephoneFollow-up: Participants

15. Telephone Interview :Findings

16. Summary of Findings • Overall referral to pain clinics appears adequate and pain clinics provide a good level of service. • This study highlights varied use of guidance on prescribing in older adults and scope for developing information leaflets for this population. • Access to services was often perceived to be difficult. • Living with chronic pain is isolating; peer support and carers are important. • Management of chronic pain in older adults needs specific attention.

17. A review of self help material by service users • Library training – Data Bases (NHS e-library, INTUTE etc) • Pain Concern, Pain Association (Scotland), ARUK, Diabetes UK etc • Examples of pain self help material and non pain material to be used as exemplars • Grading system • Templates for phase IV & V

18. Results 1. Catalogue of relevant self-help material • Books / ebooks • Internet • Magazines • Leaflets • CD’s / Tapes 2. The process • The group can recommend a format for reviewing self help material that may enable users to search and review material for themselves. Paper under review with Pain Medicine

19. Patient perspectives

20. Implications for practice • Due to the subjective nature of pain, an effective partnership between the person and the professionals is essential for pain to be reported, and as a consequence, appropriately managed. • Older adults’ confidence in reporting pain is likely to be enhanced if they perceive they are being listened to and believed. • Stoical attitudes are not an insurmountable barrier to good management. • Discussions about pain need to be actively facilitated • Facilitation involves clarification of expectations and experiences around symptoms (and function), pain management, and acknowledgement of concerns. • Importance of family involvement

21. Development of materials • Self-management skills leaflet • Information sources signposting booklet • Medikidz comic book/graphic novel • Facebook learning object – FLO’s Story

22. Self-management skills leaflet • developed from survey of people with chronic pain • refined in EOPIC focus groups • links with online feedback animation • links with online pain management instruction • seeking endorsement by British Geriatrics Society

23. Signposting booklet • developed in EOPIC focus groups • directs to • Health professionals • Other people with chronic pain • Professional societies/charities • Scientific evidence for lay readers • seeking endorsement by British Pain Society

24. Comic book/graphic novel • idea from analysis of interviews/focus groups – grand parenting affected by chronic pain • developed in partnership with Medikidz.co.uk • high quality, accessible information for 8-15 years olds about older people with pain

25. Facebook learning object - FLO’s story • Learning resource for health professional students • Idea from analysis of interviews/focus groups – importance of health professionals’ empathy and understanding • A year in the life of an older woman with chronic pain – material derived from EOPIC interviews/focus groups • developed in partnership with professional play writer • Funded by Higher Education Academy • Tested with nursing students (Teesside). • About to be tested with medical students (Dundee)

26. Next steps • Exploring modes of delivery (Starts in June’13) • User centred workshops with previous participants to explore methods of refining and delivering Self–help materials generated in this research • Evaluation will be undertaken through questionnaires and face to face interviews with participants in the workshops. • Portal for accessing self-help resources. • Developing “The Pain Toolkit” for older adults

27. Impact summary • Primary user outputs to date • 1. Self-management skills leaflet; 2. Information booklet; 3. Medikidz book; 4. FLO’s story • Endorsement and dissemination by BPS, BGS • User-centred events • Showcase events: Aberdeen – April 2012, April 2013 • British Science Festival: September 2012, September 2013 • Systematic review of self-help material • Catalogue of relevant material • Process and grading system, applicable to other conditions • Endorsed and disseminated by BPS • Practice and policy points for facilitating self-help: • Primary and secondary care, multi-disciplinary

28. Publications to date • Chronic Pain in later life: a review of current issues and challenges. Aging Health (2011)7(4) Schofield et al • I feel so stupid because I can’t give a proper answer…’ How older adults describe chronic pain: a qualitative study.BMC Geriatrics 2012, 12:78 • The need to define chronic pain self-management. J Pain Manage 2012;5(3):231-236 . • Cost-effectiveness of Self-management Methods for the Treatment of Chronic Pain in an Aging Adult Population: A Systematic Review of the Literature. Clinical Journal of Pain:2013;29(4):366-375

29. Publications submitted • Chronic pain and later life: “I try and smile, I try and be cheery.” Older adults’ perspectives of engaging with healthcare professionals. (Journal of Pain and Symptom Management) • Flo’s story; the development of an online integrative learning package about persistent pain in older people. (Pain and Rehabilitation) • The effect of chronic Pain on the labour Market Outcomes Amongst the 50+in the UK (European Journal of Pain)

30. Planned publications Further publication in progress include: • Searching for and reviewing self help material - a lay perspective (Journal of Pain) • Exploring the treatment expectations and experiences of older adults attending pain clinics in the UK: A patients s’ perspective. (Age and Ageing) • The experiences, acceptance and usability of the Sensecam: Preliminary findings (Teesside site) • No Pain No Gain? Exploring physical functioning of older adults with Chronic Pain (Teesside)

31. Team meeting, November 2012, Newcastle-upon-Tyne

32. Blair H. Smith; Breda Anthony; Paul Cameron; Clare Clarke Pat Schofield; Rachel Docking Denis Martin; Gemma Wilson; Lisa Anderson Paul McNamee; Dwayne Boyers; Carrie Stewart Amanda Clarke; Derek Jones

33. Lifelong Health and Wellbeing (LLHW) initiative, funded by • Arts and Humanities Research Council (AHRC) • Biotechnology and Biological Research Council (BBSRC) • Engineering and Physical Sciences Research Council (EPSRC) • Economic and Social Research Council (ESRC) • Medical Research Council (MRC) • UK health departments • Chief Scientist Office of the Scottish Government Health Directorates • National Institute for Health Research/The Department of Health • Health and Social Care Research & Development of the Public Health Agency (Northern Ireland) • Wales Office of Research and Development and Social Care, Welsh Assembly Government