A patient-informed framework for Complex Regional Pain Syndrome care delivery: a mixed-methods study

Area of Science:

• Pain Management
• Healthcare Systems
• Patient Experience Research

Background:

• Complex Regional Pain Syndrome (CRPS) presents diagnostic and treatment challenges, impacting patients significantly.
• There is a growing need to integrate lived experiences into CRPS healthcare pathway development.
• This study focuses on upper limb CRPS in New Zealand, addressing gaps in person-centered care.

Purpose of the Study:

• To develop a framework for CRPS healthcare pathways guided by the lived experiences of individuals with the condition.
• To inform future CRPS healthcare delivery by understanding patient perspectives on diagnosis and treatment.
• To enhance the effectiveness and accessibility of CRPS care through a patient-informed approach.

Main Methods:

• A mixed-methods study integrating qualitative interviews and quantitative surveys.
• Semi-structured interviews were conducted with 13 individuals experiencing CRPS.
• A survey was administered to 75 individuals with CRPS to gather broader experiences.

Main Results:

• Integrated findings suggest early access to information, validation, and clear care pathways are crucial.
• These elements can reduce patient burden, improve healthcare navigation, and support self-management.
• Participant demographics included a majority of female participants across both interview and survey groups.

Conclusions:

• The developed Prepare, Consider, Address, Unify, and Equip (PCAUE) framework is grounded in patient experiences.
• The framework emphasizes early recognition, person-centered communication, holistic care, accessible pathways, and supported self-management.
• Further research is recommended to explore healthcare professionals' perspectives for successful framework implementation.