613: What is the lived experience of CRPS?: A thematic synthesis

Topic: Education, Societal Impact, and Others
Subtopic: Methodology (SLRs, Meta analysis)

Background and Aims: Complex regional pain syndrome (CRPS) is a limiting and distressing pain condition. The majority of CRPS research has drawn on biomedical frameworks, testing quantitative measures that focus on diagnosis, mechanisms, and pharmacological treatment efficacy. Whilst this information is valuable, the experience expressed by those living with CRPS remains poorly understood. A 2015 review found only two studies addressing this gap (Johnston et al., 2015). Since then, research has expanded, creating an opportunity for a thematic synthesis to update the understanding of living with CRPS. The aim of this study is to synthesise available literature exploring the lived experience of CRPS.

Methods: Database searches were performed between October 2025 and January 2026 in CINAHL, Medline, PsycInfo, Scopus and Google Scholar. Qualitative studies exploring the lived experience of adults diagnosed with CRPS were included. Studies featuring mixed populations (e.g. chronic pain and CRPS), experiences post-interventions (e.g. spinal cord stimulator), and non-English were excluded.

A thematic synthesis of all text labelled ‘results’ or ‘findings’ was conducted by two reviewers following the three-stage method outlined by Thomas & Harden (2008): coding text, developing descriptive themes, and generating analytical themes. Risk of bias was assessed using the Critical Appraisal Skills Programme (CASP) checklist for qualitative studies

Results: A total of 14 qualitative or mixed-method studies were included in the thematic synthesis. The results suggest that living with CRPS is characterised by a severe physical and emotional impact that is not understood by others, a negative effect on identity and self-concept, and changes to social roles and relationships. Experiences with diagnosis and treatment are mixed, as specialty services are not universally available, and information and knowledge needs often go unmet. Coping with CRPS is discussed in terms of retaking control, acceptance, obtaining the ‘right’ support, and becoming informed.

Conclusions: Living with CRPS presents both physical, emotional, and social challenges that negatively impact one's identity. The review demonstrates that there are significant opportunities to improve information provision to people with CRPS and develop more robust treatment pathways to facilitate timely diagnosis and management. Healthcare services could benefit from further lived experience inclusion into service development and delivery.

References: Johnston, C. M., Oprescu, F. I., & Gray, M. (2015). Building the evidence for CRPS research from a lived experience perspective. Scandinavian Journal of Pain, 9(1), 30-37. https://doi.org/doi:10.1016/j.sjpain.2015.06.003

Presenting Author: Tim McVicar
Submitting Author: Tim McVicar

Senior Author: Tim McVicar

IASP 2026 Global Year theme of Neuropathic Pain: Yes

• Debbie J. Bean Email: debbie.bean@aut.ac.nz: PhD - AUT Person Centred Rehabilitation Research Centre, School of Allied Health, AUT University, Auckland, New Zealand
• Bronwyn Lennox Thompson: PhD - Pain Management Department - Orthopaedic Surgery and Musculoskeletal Medicine, University of Otago, Dunedin, New Zealand.