Titre :

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

Auteur(s) :

Hakimi, Adrien [Auteur]
Unité de Recherche Pluridisciplinaire Sport, Santé, Société (URePSSS) - EA 7369 [URePSSS]
Bergoin, Cyrille [Auteur]
Mucci, Patrick [Auteur]
Unité de Recherche Pluridisciplinaire Sport, Santé, Société (URePSSS) - ULR 7369

Titre de la revue :

Disability and Rehabilitation

Nom court de la revue :

Disability and Rehabilitation

Pagination :

1-7

Éditeur :

Taylor & Francis

Date de publication :

2021-12-18

ISSN :

1464-5165

Discipline(s) HAL :

Sciences du Vivant [q-bio]

Résumé en anglais : [en]

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 ...
Lire la suite >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.Lire moins >

Comité de lecture :

Oui

Audience :

Internationale

Établissement(s) :

Université de Lille
Univ. Artois
Univ. Littoral Côte d’Opale

Collections :

• Unité de Recherche Pluridisciplinaire Sport, Santé, Société (URePSSS) - ULR 7369

Équipe(s) de recherche :

Activité Physique, Muscle, Santé (APMS)

Date de dépôt :

2021-12-19T14:33:25Z
2022-01-19T07:31:40Z
2022-01-21T09:33:17Z