Engaging with Older People to Develop and Deliver Interventions for the Self-management of Chronic Pain (EPIC).

Lead Research Organisation: University of Dundee
Department Name: Division of Population Health Sciences

Abstract

Pain increases with age: older people, more than any other group, are likely to experience pain. Chronic pain (i.e. pain that goes on for a long period of time and often has no known cause) can have a substantial effect on the lives of individuals and their families, especially on social networks and daily activity. In some cases, this can lead to depression, anxiety and isolation. Getting the right advice and support is often hard, sometimes due to other people s attitudes and lack of available and accessible help, which can be made worse by physical ageing. The number of people likely to experience chronic pain is set to increase in the coming decades. This provides policy makers, practitioners and the general public with considerable challenges in helping those people - who want to - live independently in their own homes.

Our earlier work has shown that there is little research which explores older people s experiences of living with and managing chronic pain. We have also established that little is known about living and ageing with chronic pain in the community; in particular, the risk factors that may contribute to chronic pain (such as present or past occupation) and the outcomes and costs for people and their families.

Working with older adults and carers, this study will address the factors that impact on the experience and management of ageing with chronic pain. Ultimately, it will contribute to practical self-help strategies and educational material which may help to lessen the impact of pain.

We will work with members of the health care team in partnership with older adults and their carers (this will include our established group of service users) to achieve the following outcomes:
1. Identify the attitudes and approaches adopted by general practitioners, primary care teams, pain clinics and older adults towards pain management in later life;
2. Measure the economic consequences of pain 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; and
4. Explore with older adults acceptable & feasible ways to disseminate and deliver these self-help materials.

Technical Summary

Some suggest that with increasing age comes an increase in the incidence of chronic pain (Ferrell et al), with a potential to impact upon 50% of community dwelling older adults over the age of 65 (Helme & Gibson 2001). While adults with chronic pain may view their health as poorer (Reyes-Gibby et al 2002) there has been limited research that has focussed upon the specific impact of chronic pain amongst older adults as perceived by them and a limited attempt to identify their preferred pain management strategies (Schofield et al 2005)

The strategic vision of this study is to obtain a deep understanding of chronic pain and its economic impact as experienced by older adults. At the same time we will determine the perspectives of health care professionals through a series of interviews and surveys and by conducting a comprehensive review of the literature. This period of data collection will lead to the development of self-help materials along with the most acceptable and feasible ways of delivering these self-help materials. Therefore we will make recommendations for modes of delivering educational material, information & support to older adults living with chronic pain in the community. The study will comprise five phases, each informing the other and delivered between three institutions. Fundamental to the study will be the views and perspectives of the older adults who will inform each phase in a meaningful way.

Publications

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Cameron Paul (2011) The need to define chronic pain self-management in Journal of Pain Management

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Geneen LJ (2017) Physical activity and exercise for chronic pain in adults: an overview of Cochrane Reviews. in The Cochrane database of systematic reviews

 
Description British Geriatric Society Guidelines on the Management of Pain in Older People
Geographic Reach Multiple continents/international 
Policy Influence Type Membership of a guideline committee
URL http://ageing.oxfordjournals.org/content/42/suppl_1/i1.long
 
Description National Advisory Committee on Chronic Pain (Scotland)
Geographic Reach National 
Policy Influence Type Participation in a advisory committee
URL http://www.gov.scot/Topics/Health/Services/Chronic-Pain/NACCP
 
Description National Advisory Committee on Chronic Pain (Scotland). BS and PC are members
Geographic Reach National 
Policy Influence Type Participation in a advisory committee
URL http://www.gov.scot/Topics/Health/Services/Chronic-Pain/NACCP
 
Description Scottish Government Ministerial Steering Group on Chronic Pain
Geographic Reach National 
Policy Influence Type Participation in a advisory committee
 
Description Dunhill Medical Trust
Amount £80,156 (GBP)
Organisation The Dunhill Medical Trust 
Sector Charity/Non Profit
Country United Kingdom
Start 01/2014 
End 12/2015
 
Description National Institute for Academic Anaesthesia
Amount £42,784 (GBP)
Organisation Association of Anaesthetists of Great Britain and Ireland (AAGBI) 
Sector Learned Society
Country United Kingdom
Start 07/2014 
End 02/2016
 
Description Project grant /Joint Research Council, dot.rural, RCUK Digital Economy Research
Amount £92,569 (GBP)
Organisation Research Councils UK (RCUK) 
Sector Public
Country United Kingdom
Start 07/2010 
End 06/2013
 
Description Siddall scholarship /College of Life Sciences University of Aberdeen
Amount £73,000 (GBP)
Organisation University of Aberdeen 
Sector Academic/University
Country United Kingdom
Start 07/2010 
End 06/2014
 
Title Olders peoples experiences of self-management strategies:a systematic review and thematic analysis 
Description The systematic search was designed to identify all relevant non-experimental and qualitative studies in peer-reviewed journals between 1990-2012, limited to the English language. A 3-step search strategy was used. An initial limited search of electronic databases including PUBMED, CINHAL, PSYCHINFO, and MEDLINE was undertaken in order to identify the keywords contained in the titles, abstracts and index terms used to describe relevant journal articles independently screened identified titles and abstracts for relevance. Article meeting the inclusion criteria were quality appraised using the Critical Appraisal Skills Programme checklist for qualitative studies. Findings : Iterative analysis is on going however two overarching themes are emerging. 1. Self-management as a task. 2. Self-management as emotional labour and a social process 
Type Of Material Physiological assessment or outcome measure 
Provided To Others? No  
Impact This review is currently on going. A parallel systematic review of randomised controlled trials is also underway. Both search strategies will be made available to oterh researchers after publication 
 
Title Professional Attitudes and Beliefs Survey - Older Adult Version (PROFABS-OA) 
Description Validated questionnaire instrument for assessing health professionals' attitudes and beliefs with respect to the diagnosis and management of chronic pain 
Type Of Material Physiological assessment or outcome measure 
Provided To Others? No  
Impact The development and validation of PROFABS-OA formed the main part of the research resulting in successful completion of a PhD (Paul Cameron), funded by this grant 
 
Title Survey questionnaires 
Description Two brief survey questionnaires were developed for data collection during Phase II of the study. The first is entitled `Survey of Pain Clinicians'. The second is entitled `Survey of General Practitioners'. Both are sub-titled `Pain Management in older adults'. Each survey contains a 20-item questionnaire on attitudes and beliefs concerning older people and pain. The surveys were piloted in October 2010. 
Type Of Material Physiological assessment or outcome measure 
Provided To Others? No  
Impact None as yet. The surveys will be distributed to health practitioners working in pain clinics throughout the UK and to General Practitioners within Aberdeenshire and Teesside in November and December 2010. The results of the surveys are expected to give insight into current attitudes and approaches to pain management amongst health practitioners and to obtain volunteers for a follow-up telephone interview. 
 
Description Cochrane Pain, Palliative and Suportive Care Group 
Organisation The Cochrane Collaboration
Department Cochrane Pain, Palliative and Supportive Care Review Group (PaPaS)
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution Proposal submitted and assessed by the Cochrane Pain, Palliative and Supportive Care Group (PaPaS). This title is now officially registered The title for this work is 'Education and advice for the self-management of chronic pain in adults' examining educational interventions that have been implemented in chronic pain. This review will focus on results from RCTs, and quasi-RCTs, through the narrative will discuss result's from excluded trials. Outcomes will be assessed: Primary: quality of life, self-efficacy, pain intensity, adverse events, Secondary: knowledge/understanding of the illness, anxiety, depression including catastrophic thinking, physical disability/function, social function (e.g. outcomes of employment/job retention), completion/satisfaction/achievement of study-specific learning objectives, treatment adherence/compliance, treatment acceptability/satisfaction.
Collaborator Contribution Louise Geneen (contact and main author), Prof Blair Smith (Clinician and academic in Chronic Pain), Clare Clarke (experienced reviewer), Prof Denis Martin (Statistician), Prof Nicola Adams (psychologist), Dr Martin Dunbar (Clinical Psychologist in Chronic Pain).
Impact After prolonged discussion, this proposed review did not proceed as a Cochrane Review, but was completed, and published as listed elsewhere in the portfolio: Geneen L, Martin D, Adams N, Clarke C, Dunbar M, Jones D, McNamee D, Schofield P, Smith BH. Effects on pain and disability of education to facilitate knowledge about chronic pain for adults: a systematic review with meta-analysis. Systematic Reviews 2015 4:132 doi: 10.1186/s13643-015-0120-5 http://www.systematicreviewsjournal.com/content/4/1/132 In addition, in collaboration with PaPaS, a Cochrane Review of Reviews was conducted. Protocol paper published: Geneen L, Smith BH, Clarke C, Martin D, Colvin LA, Moore RA. Physical activity and exercise for chronic pain in adults: an overview of Cochrane reviews (Protocol). Cochrane Database of Systematic Reviews 2014, Issue 8. Art. No.: CD011279. doi: 10.1002/14651858.CD011279. The review has been submitted and we are awaiting responses from Cochrane to our revisions in light of comments received.
Start Year 2013
 
Title Living with persistent pain in later life...and what you can do to help yourself 
Description This leaflet/ fold out poster was designed for use by older adults to give basic advice on things they can do to help themselves when living with persistent pain in later life. The concept arose from focus groups with service users and pain clinicians on phase 2 of the EOPIC study.It includes the following: -Recognising negative thoughts and feelings, and learning how to relax and control stress, - Learning how to cope when others don't appreciate what you are going through. -Understanding your pain, how it affects you, and how it can be controlled, -Understanding how best to take your medications alongside other ways of managing pain, -Learn to pace activities and set goals, -Managing flare ups of pain. 
Type Support Tool - For Medical Intervention
Current Stage Of Development Wide-scale adoption
Year Development Stage Completed 2013
Development Status Under active development/distribution
Impact To date both service users and clinicians are keen to use and have access to this information. This leaflet is available on the Pain Association on www.painassociation.com, and is meanwhile in the process of being evaluatied by serivce users 
URL http://www.painassociation.com
 
Title Living with persistent pain in later life: answers to your questins..... 
Description The information contained in this booklet was derived from focus groups with services users and pain clinicians and a review of current information available for older adults who suffer with chronic pain. The aim of this booklet is aimed to be useful for the following reasons: 1. Persistent pain is a major problem in older age, causing distress and disability. 2. Many people have found tat there are things they can do to help themselves to cope with their pain, and to move on with their life. 3. Learning more about pain, how it affects you, and finding out tings you can do to help yourself are important parts of being able to manage your pain. This booklet provides an introduction to the internet, sources of information , a brief introduction to self-management and a directory of useful organisations. Everyone has their own questions about what they can do to best manage living with chronic pain and this booklet is designed to provide a resource list. 
Type Support Tool - For Medical Intervention
Current Stage Of Development Wide-scale adoption
Year Development Stage Completed 2012
Development Status Under active development/distribution
Impact This booklet had been endorsed by the British Pain Society and Pain Association Scotland .This is also been evaluated with pain clinicians and service users throughout the UK 
URL http://www.painassociation.com
 
Title What's up with Moira's Grandad? Medikidz Explain Chronic Pain 
Description The EOPIC study looked at the experiences of living with pain in later life and the potential of self-management to help. We wanted to gain insight into issues linked to family from the viewpoint of older people with chronic pain. This was done using a series of semi-structured interviews followed by a set of focus groups. In the latter we asked specific questions about being a grandparent. We found people placed great importance on their families .Grandparents was a highly valued social role. Pain -related barriers to grand parenting included: when grandchildren lacked understanding of how pain was affecting the grandparent and when grandparents had difficulty communicating their experience to grandchildren. Within our remit to produce materials to facilitate self-management, we produced a graphic novel/ comic book to help older people explain their experiences of chronic pain to younger people . 
Type Support Tool - For Medical Intervention
Current Stage Of Development Market authorisation
Year Development Stage Completed 2012
Development Status Under active development/distribution
Impact The medikidz comic book has been endorsed by the British Pain Society and Pain Association Scotland.it is currently available to buy from the Medikidz website. Evaluations are currently in progress with service users and pain clinicians through the UK for the last phase of the EOPIC study. 
URL http://www.medikidz.com
 
Description Aberdeen Showcase event April 2013 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? Yes
Type Of Presentation Poster Presentation
Geographic Reach Local
Primary Audience Participants in your research and patient groups
Results and Impact 63 participants were invited which included health professinals, clinicians and Pain Scotland leads.23 attended . Alot of cancellations due to bad weather and unable to attend as in too much pain .Professor D Martin opened the event and invited participants to give their views and comments /suggestions on the various sources of information. Participants were invited to evaluate this event by completing an evaluation form and asked to score the 3 sources of information on a score of 1(poor) to 5(excellent). Medikidz book - 44% gve this a score of 5, 33% a score of 4 and 22% a score of 3. Good feedback suggesing the book incrased awareness and gave a good understanding of chronic pain and how it affects older people. it coild also be used for other family members. It delivered the message and there was a suggestion to add a CD with the book for children and adults who mant have issues with reading. Suggestion that books should be made avaialbe in Pain clinics, GP surgeries, schools and in libraries. Pain scotland were keen to act as a provider to distribute these comic books .Suggestion that the characters in the comic could be used to promote awareness abd try drug companies to get sponsorship and keep the cost dowm.
Living with pain in older life booklet- 38.9% gve this a score of 5, 50% a score of 4 and 11.1% score of 3. It gave a list of useful book to read but these were not always available in the libraries. Interested in the internet sources but only 4 participants had access to a computer but were keen to learn more
Persistent pain leaflet- 22.2% gve this a score of 5, 50% a score of 4 &27.8% a score of 3. This was liked because it gave informaation in a consise way and all together. Suggesions to have these available in GP surgeries ,Pain clinics and Libraries. Some liked this as it could be turned in to a poster and some preferred the booklet and tuning the pages. Both were pervieved as very usefull and would be used.

All participants were keen to be involved in future showcase events ,meeting and participant in studies related to chronic pain. They felt appreciated and valued.d used from thierparticipatin /. and g
Year(s) Of Engagement Activity 2013
 
Description Alnwick Castle in Northumbria June 2013 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? Yes
Type Of Presentation Keynote/Invited Speaker
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact Around 20 older adults attended. (Not formally evaluated) but the comic book generated a lot of interest and participant's were keen to earn how to access this book and learn more about it.

Older adults asked for details on how to obtain this book and were keen to have this information to use to explain chronic pan to their grand children as well as other family members.
Year(s) Of Engagement Activity 2013
 
Description British Science Festival at Aberdeen September 2012 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? Yes
Type Of Presentation Paper Presentation
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact 53 people atnded all older adults sufferign wth chronic pain. 28 completed evaluati9on forms,71% rated the session as good excellent and wanted more practice ways of self help to reduce pain and help them maange it better. One of our speakers did relaxation theraphy which most enjoyed and said they would adopt.

Alot of attendess joined the Pain Scotland support group which is based in Aberdeen as did not know it existed until they attended the presentation.
Year(s) Of Engagement Activity 2012
 
Description British Science festival Newcastle Sept 2013 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? Yes
Type Of Presentation Keynote/Invited Speaker
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact 15 people attended - a mixture of public and health professionals working with chronic pain in older adults. Following the presentation there was an opportunity for informal discussions and networking.

Participants were interested in the Flo story - the Facebook on line interactive learning activity to gain a better understanding of living with chronic pain as an older adults 'Health professional were keen to leans about the resource book for advice and information on living with pin in later life.
Year(s) Of Engagement Activity 2013
 
Description MRC LLHW Event UCL.November 2013 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? Yes
Type Of Presentation Keynote/Invited Speaker
Geographic Reach National
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact Approximately 60 delegates attended. An informal question and answer session followed the presentation and discuss the results presented

The effect on the labour market and an ageing workforce with chronic pain created debate and discussion for future work with employment as well as unemployment.
Year(s) Of Engagement Activity 2013
 
Description Newspaper article 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact A member of the EOPIC Advisory Panel gave an interview for the NE England regional daily newspaper, The Journal. The following article, entitled 'Help me find a way to ease chronic pain' sparked members of the public to make further enquiries about participating in the study.

Acquired the volunteers who subsequently participated in Phase 1 of the study and raised awareness of pain research in the community.
Year(s) Of Engagement Activity 2013
 
Description Showcase event held at Aberdeen University to update on study progress and development to Participants for phase 1&2 of the study ,stakeholders, health professional in pain clinic and academic colleagues and lead clinician fopr Scotland and Heads of Departments in April 2012 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? Yes
Type Of Presentation Poster Presentation
Geographic Reach Regional
Primary Audience Participants in your research and patient groups
Results and Impact 62 people attended and all keen to give feedback and comment on progress to date . The event was so popular thart we have orgasnised another event for April 17th 2013 which will focus on a comic developed by the EOPIC team and collaborator 'Medikidz' which will focus on the value of family and in particular how granparens ahted thir grndchildren to be 'educated' about chronic pain

Participants felt valued and despite the bad weather and living with chronic pain those who were invited for the most part attended and so keen to help and be involved in changing how chroinc pain is currently managed and given a voice.
Year(s) Of Engagement Activity 2012
 
Description TV news item 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Media (as a channel to the public)
Results and Impact Members of the public in North East Scotland became aware of the EOPIC study via an evening news TV release.

Members of the public contacted the study as potential participants.

Acquisition of participants for Phase 1 interviews.

Heightened awareness of local research into pain amongst the public.
Year(s) Of Engagement Activity 2013