Building the evidence for CRPS research from a lived experience perspective

Area of Science:

• Pain research
• Patient experience
• Complex Regional Pain Syndrome (CRPS)

Background:

• Chronic pain, particularly Complex Regional Pain Syndrome (CRPS), is often poorly understood and managed.
• Existing pain research frequently overlooks the subjective, lived experience of patients.
• CRPS is difficult to diagnose, highlighting a gap in current medical understanding.

Purpose of the Study:

• To synthesize existing literature on the lived experience of chronic pain.
• To identify how future research on Complex Regional Pain Syndrome (CRPS) can best incorporate patient perspectives.
• To inform the development of more effective pain management strategies and national pain policies.

Main Methods:

• A narrative review of literature published between 1998 and 2015.
• Searches conducted across multiple academic databases including Medline, CINHAL, Scopus, and Web of Science.
• Analysis of 197 papers detailing chronic pain experiences, with a focused review of 12 papers on CRPS or similar conditions.

Main Results:

• A model of the lived experience of chronic pain was developed, from loss of self to acceptance.
• Key themes identified include pain invisibility, loss, coping with a non-compliant body, and self-management.
• No peer-reviewed literature was found specifically addressing the lived experience of CRPS.

Conclusions:

• There is a significant lack of research on the lived experience of CRPS.
• Future CRPS research should prioritize patient perspectives to improve understanding and outcomes.
• Patients and families should be active partners in educating healthcare providers and informing national pain strategies.