Teran-Wodzinski Patricia, Kumar Ambuj
School of Physical Therapy & Rehabilitation Sciences, Morsani College of Medicine, University of South Florida, Tampa, FL, USA.
Department of Internal Medicine & Office of Research, Morsani College of Medicine, University of South Florida, Tampa, FL, USA.
Rheumatol Int. 2025 Jan 13;45(1):25. doi: 10.1007/s00296-024-05782-3.
We aimed to assess the typical experiences, desired outcomes, satisfaction with clinical and anticipated outcomes, and the importance of improvements for individuals with Hypermobile Ehlers-Danlos Syndrome (hEDS) and Generalized Hypermobility Spectrum Disorder (G-HSD). A cross-sectional survey was conducted among adults aged 18 and above with hEDS and G-HSD. The survey included the Patient-Centered Outcome Questionnaire and an adapted version addressing common concerns in these individuals. Descriptive statistics were used for analysis. The survey received 483 responses with an 82% completion rate. Most respondents were females (90%), aged 21-30 (30%), living in North America (76%), and diagnosed with hEDS (80%). Participants diagnosed with hEDS reported higher typical levels of pain compared to those diagnosed with G-HSD and higher expected levels of pain and interference with daily activities post-treatment (p < 0.05). The areas of most significant concern were pain, fatigue, interference with daily activities, and walking issues. Our findings revealed no differences in how individuals from both groups rated their treatment expectations, except for the usual pain level and the expected pain level and interference with daily activities post-treatment. Patients' perspectives are essential for developing appropriate treatment plans and improving outcomes for this patient population. Our results will hopefully inform the development of new interventions to impact outcomes that matter to individuals with hEDS and G-HSD.
我们旨在评估患有可弯曲性埃勒斯-当洛综合征（hEDS）和广泛性高活动度谱系障碍（G-HSD）的个体的典型经历、期望的结果、对临床和预期结果的满意度，以及改善的重要性。对18岁及以上患有hEDS和G-HSD的成年人进行了一项横断面调查。该调查包括以患者为中心的结果问卷以及一个针对这些个体常见问题的改编版本。采用描述性统计进行分析。该调查共收到483份回复，完成率为82%。大多数受访者为女性（90%），年龄在21 - 30岁之间（30%），居住在北美（76%），且被诊断为hEDS（80%）。与被诊断为G-HSD的参与者相比，被诊断为hEDS的参与者报告的典型疼痛水平更高，且治疗后预期的疼痛水平和对日常活动的干扰也更高（p < 0.05）。最令人担忧的领域是疼痛、疲劳、对日常活动的干扰和行走问题。我们的研究结果表明除了通常的疼痛水平、预期的疼痛水平以及治疗后对日常活动的干扰外，两组个体对治疗期望的评分没有差异。患者的观点对于制定合适的治疗方案和改善该患者群体的治疗结果至关重要。我们的结果有望为开发新的干预措施提供信息，以影响对患有hEDS和G-HSD的个体至关重要的结果。
