What do I need to know? Essential educational concepts for complex regional pain syndrome

Background Complex Regional Pain Syndrome (CRPS) is a rare but disabling pain condition. Accurate and timely education about CRPS is key to promote optimal clinical outcomes, but it is unclear what the content of that education should be. We aimed to determine the content that both people with CRPS and expert health care professionals (HCPs) reported as important. Methods An international three-round e-Delphi was conducted, recruiting adults diagnosed with CRPS and HCPs. In Round 1, participants were asked to list the most important information people with CRPS should know regarding the condition. Data were organized into concepts and allocated to themes. In Rounds 2 and 3, participants rated each concept on a 9-point Likert Scale, categorized as 'not important' (0-3), 'important' (4-6) and 'very important' (7-9). A concept attained consensus when >= 75% agreement was reached within a category. Results Sixty-two participants (HCPs: n = 7; CRPS: n = 55) proposed 193 concepts in Round 1, resulting in 22 themes. Fifteen additional concepts were identified in Round 2, resulting in a total of 208 concepts. From that list, 48 concepts that emphasized understanding and evidence-based management of the disorder, the importance of self-management strategies, pacing and movement, reached joint consensus as 'very important'. One concept: 'Advise that movement does not help' reached joint consensus as 'not important'. Conclusion Forty-eight concepts were jointly considered 'very important' for future CRPS-related educational content. Future research to better understand group differences and to canvas a broader HCP group is warranted. Significance This e-Delphi study identified the 48 core concepts that those with the lived experience of CRPS, and advanced practitioner health care professionals jointly rated as 'very important' to include in fundamental and accessible educational material.