Engaging with older people and their carers to develop interventions for the self-management of chronic pain

Searching for and reviewing self help material:a lay perspective

EOPIC

Ron Marsh 1 Richard Gard, Michael Morrison, Rosemary Morrison, Sheena Fowler, Carrie Stewart (PhD Student) 1 , Pat Schofield 1 On behalf of the EOPIC team ( Denis Martin3 , Derek Jones4 , Geraldine Anthony 1, Paul McNamee 3 , Amanda Clarke 3, Blair Smith 4 , Pat Schofield1) 1University of Aberdeen Centre of Academic Primary Care; Health Economics Research Unit; 2 Teesside University Institute of Health & Social Care;3Northumbria University School of Health, Community and Education Studies; 4 University of Dundee Population Health

Background Pain is common: the one month population prevalence of pain, in persons aged 18-65 years in the UK, has shown to range from around 8% in the abdomen to 28% in the low back area 1. In older persons, the occurrence of pain-especially disabling pain and /or pain at multiple sites is a particularly important problem since it threatens independent functioning & functional self–efficacy2. There is a plethora of self help materials available from a range of sources accessible to the general public. The difficulty is in deciding what format they should be offered. This project was developed to compliment the systematic reviews carried out as part of the EOPIC study.

Aims &Objectives

Methods Design: Co-action approach between service users and researchers.Reviewers: Seven lay reviewers drawn from participants within the EOPIC programme and volunteers from the advisory group. One PhD student and the Chief Investigator were also involved. Library training provided for all reviewers to support locating self help material in the grey literature. Strategy: Service users experiences informed the scope and search strategy. Sources included: Pharmacies; Libraries; GP surgeries ;Arthritis research Council; International Pain Societies; CKS NHS; INTUTE; Scirus; SIGN; NICE; Patient UK; Pain Concern; books and periodicals. Inclusion: A focus on self-management of non-malignant musculoskeletal pain and designed for adults/older adults. Grading System: Developed using service users preferences. 10 criterions scored 0-1(0=not demonstrated, 1=demonstrated) for items such as font size, colour and succinctness of information. Data collection: Each reviewer allocated 1+ sources to identify materials. Materials were categorised: books/ e-books, internet sites, magazines, leaflets, CDs/tapes. Each category of materials was reviewed by 2 reviewers. Analysis: Materials scoring <5 were not included in final review. Group consensus decided exemplars and recommendations.

ResultsOver fifty–seven resources from twenty–eight sources were identified. Thirty-two items met key criteria for inclusion. Main reasons for rejection were the lack of: a formal update process, a support network or identified funding body. No resources identified were for older adult specifically.

Conclusion

Recommendations

Overall, leaflets seem to be the preferred format. There are a few good internet sites and some useful books. The general rule is that a range of formats is probably the best option. A range of books, internet sites and leaflets were found to be useful. But usefulness of these may vary in use according to personal choice.

The key recommendation that can be made from this work is that there is a need to develop a guide for older adults to enable them to search for and review self help material.

References

This study was funded by the LLHW initiative

Acknowledgements

1.Hunt IM et al (199): The prevalence &association features of chronic widespread pain in the community. Rheumatology (Oxford) 38(3):275-9.

2. .Onder G et al (2006). Association between daily pain and physical function among old-old adults living in the community : results from the iLSIRENTE study. Pain 121: 53-59.

To involve a group of older adults with chronic pain to: •identify available self help pain management material, •develop a patient-focussed grading system to assess the quality of, identify exemplars of and formulate a set of recommendations to aid development and evaluation of these materials.