Pain and pain management experiences following spinal cord injury – a mixed methods study of Australian community-dwelling adults

Abstract

Purpose

There is a high prevalence of persistent pain following SCI yet insights into its impact and the quality of pain care are limited. We aimed to explore, in-depth, the problem of persistent pain in Australian community-dwelling adults with a spinal cord injury (SCI). Our objectives were to investigate (i) how individuals experience persistent pain, (ii) how they experience pain care and (iii) the concordance between clinical practice guidelines for managing pain and reported care practices.

Methods

We conducted a mixed-methods convergent parallel study. Adults with SCI and persistent pain completed a survey (n = 43); a subset of participants completed interviews (n = 10). We analysed the data from each method separately and then integrated the findings.

Results

Results indicated that the life impact of persistent pain is variable but it can be more disabling than physical impairments and compound a sense of isolation and despair. Community-based management was reported to predominantly have a pharmacological focus, with occurrences of opioid misuse apparent in the data. Access to expert, comprehensive and individualised care was frequently reported as inadequate.

Conclusion

While some people with SCI and persistent pain can effectively self-manage their pain, for others the impact on quality of life is profound and complex care needs are commonly unmet.

IMPLICATIONS FOR REHABILITATION

• Persistent pain is a common consequence of SCI and profoundly impacts quality of life.

• Complex pain care needs are commonly unmet.

• Individuals require regular, comprehensive, biopsychosocial assessment.

• The effectiveness of pain management strategies must be monitored on an ongoing basis.

• Opportunities for personal self-management support must be available long-term.

Keywords:

• Spinal cord injury
• persistent pain
• mixed methods
• pain management
• best practice care

Acknowledgments

The authors gratefully acknowledge the International Spine Centre, Adelaide, Australia, for their early support and contribution to project planning. The authors would like to thank the staff members of Australian SCI support organisations (SCIA, PBF Australia, PQSA, ParaQuad NSW, Spinal Life Australia, Independence Australia, SPIRE, ParaQuad Tasmania, Spinal ACT, LSA, Spinal Chatters, Disability Sports Australia, Community Care SA) who assisted with participant recruitment. The authorship team also gratefully acknowledges the generous and important contributions of the participants in this research.

Disclosure statement

GLM has received support unrelated to this work from Reality Health, Connect Health UK, Sequirus, Pfizer, AIA Australia, SwissRe, Gallagher Bassett, Kaiser Permanente, Workers' Compensation Boards in Australia, Europe and North America, the International Olympic Committee, the Port Adelaide Football Club and the Arsenal Football Club. GLM receives royalties for several books on pain and speakers’ fees for talks on pain, pain education, physiotherapy, and rehabilitation. All other authors declare no competing interests.

Additional information

Funding

EK was supported by Lifetime Support Authority South Australia (GA00096). GLM was supported by an Australian National Health and Medical Research Council Leadership Investigator Grant (NHMRC ID 1178444). CEF and JWM declare no funding support related to this research. All authors confirm that this research was conducted independently from funders; the funders played no role in designing the study; in the collection, analysis, and interpretation of data; in the writing of the report; or in the decision to submit the article for publication.