EOPIC Engaging 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

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

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

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

EOPIC Objectives 1.Measure the economic consequences of pain in later life 2.Investigate the attitudes and approaches adopted by general practitioners, primary care teams, pain clinics and older adults towards pain management in older age 3.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 4.Explore with older adults acceptable & feasible ways to disseminate and deliver these self-help materials.

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?

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

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)

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?

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

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

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

Telephone Follow-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%)

Telephone Follow-up : Participants

Current guidance used for treating pain BPS Guidelines NICE Guidelines Current guidance for prescribing for pain relief Majority did not use any A mixture of clinical experience as well as BPS & NICE Guidelines Information leaflets for older adults No different from leaflets given to the normal population Most had designed / adapted their own leaflets focusing on “patient centred care” Frequency of reviews Overall, reviews were adequate Varied from patient to patient and as often as weekly for complex cases Most done face-to face or, if patient stable, by follow up phone calls by nurses Pain assessment tools BPI VAS Numerical Pain Rating Scale Telephone Interview :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. Summary of Findings

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

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

Patient perspectives

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

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

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

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

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

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)

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

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

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): 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):

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)

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)

Team meeting, November 2012, Newcastle-upon-Tyne

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

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