Background Complex regional pain syndrome (CRPS) can be a debilitating pain condition with enduring physical, psychological and social impacts. CRPS is often poorly understood by healthcare professionals and management needs to be tailored to each individual's presentation. People with lived experience express difficulty in accessing reliable and meaningful information about the condition. This study aimed to co-create a trustworthy infographic to share information about the lived experience of CRPS. Methods We adopted a seven-phase, iterative, participatory methodology to co-create the infographic. Potential infographic content was obtained from qualitative work investigating the lived experience of CRPS. Online consumer engagement (people with doctor diagnosed CRPS/their family, n=20) was used to prioritise content to be included in the infographic and then potential designs were sourced. The research team narrowed the selections down to two designs which were presented to consumers online for final selection (n=25) and refinement (n=34). Results An infographic for understanding the lived experience of CRPS was completed using participatory design, providing a resource aligned to the needs of people with this condition. Using the Patient Education Materials Assessment Tool, the final infographic rated highly for understandability (92%) and participants indicated significant willingness to share this infographic with others (93%). Conclusion A process of participatory design was an effective and efficient process for translation of evidence gathered from qualitative research into a trustworthy resource for people with CRPS and their support people.

Objectives Complex regional pain syndrome (CRPS) is a persistent pain condition which is often misunderstood and poorly managed. Qualitative studies are needed to explore the lived experience of the condition and to better understand patient perspectives on their management experiences and needs. The aim of this study was to explore the lived experience of CRPS in Australia, including exploration of their perceptions of care and advice received from healthcare professionals. Methods A qualitative study with individual in-depth semi-structured, face-to-face interviews was performed (n=15, 80% female, average time elapsed since diagnosis 3.8 years). Qualitative data were analysed using an inductive thematic analysis approach. Results Four main themes with associated subthemes were identified, representing the participants’ journey: (1) Life Changing Impact of CRPS (Subthemes: Impact on self, Impact on others); (2) Variable Experiences of Care (Subthemes: Helpful experiences of care, Unhelpful experiences of care); (3) Making Sense of CRPS (Subthemes: Knowledge and understanding, Dealing with unpredictability); and (4) Perceptions on Lessons Learned from Living with CRPS (Subthemes: Acceptance was an important part of the journey, Trial and error was necessary to find an individual way forward, Coping strategies). Conclusions The themes identified align to and expand on prior qualitative research findings in people with CRPS. It highlights the challenges people face related to their personal self, their close relationships and their social and work roles. It highlights the difficulties these people have in finding reliable, trust-worthy information. These findings suggest that healthcare professionals may benefit from education about how to better support people with CRPS, including helping people to navigate to the right care. Engaging people with CRPS in the development of educational resources should be a future research goal. It is recommended that patient perspectives are incorporated into the development of care pathways for CRPS.

Specialist physiotherapy services can fill a gap in the management of pain disorders in primary care. Fatima has persistent musculoskeletal pain, not responding to first-line guideline-based management. Despite normal radiology, specialist medical review is requested. Although waiting considerable time for the appointment (partly caused by the backlog of patients like her), Mary develops secondary mental health issues. The usual stepped-care approach is failing her. Specialist physiotherapist review is requested, providing expert-level management suggestions to address complexity in her presentation. The specialist physiotherapist works collaboratively with her treating physiotherapist to achieve positive outcomes for Fatima. Specialist physiotherapy services are an under-recognised value-added step between the GP and medical specialist. Increased utilisation of the skills and competencies of specialist physiotherapists can positively contribute to the health of Australians who suffer the burden of complex/persistent musculoskeletal pain complaints.