UCL Great Ormond Street Institute of Child Health, London, UK.
Department of Epidemiology, Sciensano, Brussels, Belgium.
Clin Rheumatol. 2024 Sep;43(9):3005-3017. doi: 10.1007/s10067-024-07071-7. Epub 2024 Jul 31.
Hypermobility spectrum disorders (HSD) and hypermobile Ehlers-Danlos syndrome (hEDS) are often accompanied by varied and complex multisystemic comorbid symptoms/conditions. The Spider questionnaire was developed to evaluate the presence and impact of eight common multisystemic comorbidities. Thirty-one questions across eight symptom domains assess neuromusculoskeletal, pain, fatigue, cardiac dysautonomia, urogenital, gastrointestinal, anxiety, and depression symptoms. This study aimed to evaluate the Spider's construct validity in adults.
A cross-sectional observational study was conducted over four stages. Three international patient charities aided recruitment of participants through social media and website advertisements. Adults aged 18 to 65 years, with and without HSD/hEDS, were invited to participate. Validated, frequently used comparator questionnaires were used to establish convergent validity of Spider symptom domains. A control group was recruited for known-group validity analysis. Participants answered each Spider domain and the corresponding comparator questionnaire via surveys hosted by REDCap. Anonymous data were analysed using SPSS. Convergent validity was assessed through Spearman's correlational analysis and known-group validity through Mann-Whitney U analysis.
A total of 11,151 participants were recruited across the four stages. Statistically significant, moderate-to-strong correlations were found between all Spider domains and their comparators (p < 0.001, r = 0.63 to 0.80). Known-group validity analysis showed statistically significant differences (p < 0.001) between the hypermobile and control groups in all eight domains.
Convergent and known-group validity of the Spider was established with adults. These results suggest the Spider can measure the presence and impact of multisystemic comorbid symptoms/conditions in adults with HSD/hEDS, providing a tool which guides multidisciplinary management. Key Points • The Spider questionnaire is a novel tool assessing the presence and impact of the multisystemic comorbid symptoms/conditions associated with HSD/hEDS. • Convergent and known-group validity of the Spider questionnaire was established in adults aged 18 to 65. • This tool provides a quick and easy method to visualise the symptom profile of those with HSD/hEDS to guide symptom management.
过度活动谱障碍（HSD）和过度活动型埃勒斯-当洛斯综合征（hEDS）常伴有多样且复杂的多系统合并症症状/状况。蜘蛛问卷（Spider questionnaire）是为评估八种常见多系统合并症的存在和影响而开发的。该问卷由八个症状领域的 31 个问题组成，评估神经肌肉骨骼、疼痛、疲劳、心脏自主神经功能障碍、泌尿生殖、胃肠道、焦虑和抑郁症状。本研究旨在评估蜘蛛问卷在成年人中的结构效度。
这是一项横断面观察性研究，分为四个阶段进行。三个国际患者慈善机构通过社交媒体和网站广告帮助招募参与者。邀请年龄在 18 至 65 岁之间、患有和不患有 HSD/hEDS 的成年人参加。使用经过验证的、常用的对照问卷来建立蜘蛛症状领域的聚合效度。招募对照组进行已知组有效性分析。参与者通过 REDCap 托管的调查回答每个蜘蛛域和相应的比较器问卷。匿名数据使用 SPSS 进行分析。通过 Spearman 相关性分析评估聚合效度，通过 Mann-Whitney U 分析评估已知组有效性。
四个阶段共招募了 11151 名参与者。所有蜘蛛域与其对照之间均存在统计学显著的中度至强相关性（p<0.001，r=0.63 至 0.80）。已知组有效性分析显示，在所有八个领域中，过度活动组和对照组之间存在统计学显著差异（p<0.001）。
蜘蛛问卷在成年人中建立了聚合和已知组的有效性。这些结果表明，蜘蛛可以测量 HSD/hEDS 成年人多系统合并症症状/状况的存在和影响，为多学科管理提供了一种工具。关键点： • 蜘蛛问卷是一种评估与 HSD/hEDS 相关的多系统合并症症状/状况的存在和影响的新型工具。 • 在 18 至 65 岁的成年人中建立了蜘蛛问卷的聚合和已知组的有效性。 • 该工具提供了一种快速简便的方法来可视化 HSD/hEDS 患者的症状谱，以指导症状管理。
