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

Abstract : Purpose: This study aims to determine from questionnaires, submitted to patients with Ehlers-Danlos Syndromes 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 method: 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 a Kendall’s coefficient of concordance. Results: A total of 118 responses was analysed for the first round and 87 for the second and the third round. Ten categories were extracted from the first round. Ranking of the ten 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”. Conclusion: These categories seem to be the most important to assess in patients with hEDS, despite the lack of consensus on this ranking.
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https://hal.univ-lille.fr/hal-03533764
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Soumis le : mercredi 19 janvier 2022 - 08:31:48
Dernière modification le : mercredi 23 mars 2022 - 15:51:23
Archivage à long terme le : : mercredi 20 avril 2022 - 18:08:16

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Adrien Hakimi, Cyrille Bergoin, Patrick Mucci. What are the most important symptoms to assess in hypermobile Ehlers-Danlos syndrome? A questionnaire study based on the Delphi technique. Disability and Rehabilitation, 2021, Disability and Rehabilitation, pp.1-7. ⟨10.1080/09638288.2021.2012839⟩. ⟨hal-03533764⟩

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