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

PURPOSE: Complex Regional Pain Syndrome (CRPS) can be difficult to diagnose and treat, with significant implications for the person in pain. Calls have been made for lived experiences to guide future CRPS healthcare pathways. This mixed methods study aimed to develop a framework to guide such pathways, informed by people's lived experiences. MATERIALS AND METHODS: This is an integration of findings from a mixed methods study about people's experiences of diagnosis and treatment for upper limb CRPS healthcare in New Zealand. Inferences were identified to inform the framework developed. RESULTS: Thirteen people participated in a semi-structured interview (11 female, mean age 55 years), and 75 in a survey (91% female, mean age 50 years, SD 13). Integrated findings from these components infer that having early access to information, validation, and clear care pathways may reduce burden, facilitate healthcare navigation, and support self-management. CONCLUSIONS: The Prepare, Consider, Address, Unify, and Equip framework was developed in this study to inform healthcare delivery for CRPS. Grounded in the experiences of people with CRPS, it emphasises early recognition, person-centred communication, timely holistic care, accessible treatment pathways and information, and supported self-management. Future research should examine healthcare professionals' perspectives to support implementation of this framework.