Department of Rehabilitation Sciences and Physiotherapy, Artevelde University College, Ghent University, and Centre of Medical Genetics, Ghent University Hospital, Ghent, Belgium.
Disabil Rehabil. 2010;32(16):1339-45. doi: 10.3109/09638280903514739.
To investigate the musculoskeletal complaints, physical activity (PA) and health-related quality of life (HRQoL) in patients with the Ehlers-Danlos syndrome hypermobility type (EDS-HT).
Thirty-two female EDS-HT patients as defined by the Villefranche criteria and 32 gender- and age-matched healthy control subjects participated in the study. Data about musculoskeletal complaints were collected from a specific form developed for the study. Daily PA and HRQoL were evaluated by the Baecke questionnaire and the RAND 36-Item Health Survey (distributed by RAND), respectively.
A significant presence of joint pain, joint dislocations, muscle cramps, tendinitis, fatigue and headache were revealed in the EDS-HT patient group. Joint pain was reported as the most frequent and most severe symptom. The habitual PA level was diminished in the patient group. Specifically, EDS-HT subjects had significantly lower sport participation, but a comparable leisure time excluding sports compared to the healthy control subjects. All eight HRQoL dimensions of the RAND-36 and both physical and emotional summary scores were significantly impaired in EDS-HT.
EDS-HT is characterised by various severe musculoskeletal complaints and has a detrimental effect on the habitual level of PA and HRQoL, in both physical and psychosocial dimension. An appropriate treatment and management in healthcare is needed.
调查患有 Ehlers-Danlos 综合征高活动型（EDS-HT）的患者的肌肉骨骼投诉、身体活动（PA）和健康相关生活质量（HRQoL）。
32 名符合 Villefranche 标准的女性 EDS-HT 患者和 32 名性别和年龄匹配的健康对照者参加了这项研究。肌肉骨骼投诉的数据是从专门为此研究制定的表格中收集的。日常 PA 和 HRQoL 通过 Baecke 问卷和 RAND 36-Item 健康调查（由 RAND 分发）分别进行评估。
EDS-HT 患者组存在明显的关节疼痛、关节脱位、肌肉痉挛、肌腱炎、疲劳和头痛。关节疼痛被报告为最常见和最严重的症状。患者组的习惯性 PA 水平下降。具体来说，与健康对照组相比，EDS-HT 患者的运动参与度明显较低，但非运动休闲时间相当。RAND-36 的所有 8 个 HRQoL 维度以及身体和情绪综合评分在 EDS-HT 中均显著受损。
EDS-HT 的特点是存在各种严重的肌肉骨骼投诉，并对习惯性 PA 和 HRQoL 产生不利影响，包括身体和心理社会维度。需要在医疗保健中进行适当的治疗和管理。
