What are the most important symptoms to assess in hypermobile Ehlers-Danlos syndrome? A questionnaire study based on the Delphi technique

Purpose This study aims to determine from questionnaires, submitted to patients with Ehlers-Danlos syndrome hypermobile type (hEDS), what symptoms they perceive as having the most impact on their well-being and, according to them, what symptoms should be assessed. Materials and methods Three rounds of online questionnaires were conducted following the Delphi method. The first round allowed us to obtain the most important symptoms to assess according to the patients. The second and third round aimed at ranking the categories according to their order of importance. Establishment of a consensus was evaluated using Kendall's coefficient of concordance. Results A total of 118 responses were analyzed for the first round and 87 for the second and the third round. Ten categories were extracted from the first round. Ranking of the 10 categories in the second round did not reach consensus (W = 0.33, p < 0.001) nor did the four most important categories in the third round (W = 0.43, p < 0.001). However, three categories stand out from ranking: pain, fatigue and sleep disorders, and musculoskeletal disorders. Conclusions These categories seem to be the most important to assess in patients with hEDS, despite the lack of consensus on this ranking.

Automated summary

According to the questionnaire responses, patients with hEDS identified pain, fatigue and sleep disorders, and musculoskeletal disorders as the most impactful symptoms on their well-being.