Department for Prosthodontics and Biomaterials, University Hospital Münster, D-48149 Münster, Germany.
Department of Oral and Maxillofacial Surgery, Hospital University Münster, 48149 Münster, Germany.
Int J Environ Res Public Health. 2023 Jan 26;20(3):2218. doi: 10.3390/ijerph20032218.
This study assessed differences in the oral health-related quality of life (OHRQoL) between subtypes of Ehlers-Danlos syndrome (EDS). For statistical analysis, participants were divided according to their subtype: classical EDS (cEDS), hypermobile EDS (hEDS), and vascular EDS (vEDS). All other subtypes were descriptively analyzed. Free-text questions and the German short form of the Oral Health Impact Profile (OHIP-14) were used. Finally, 295 questionnaires were included, representing 10 different EDS subtypes. The mean OHIP score of all participants was 19.6 points (standard derivation (SD) ± 12.3). The most predominant subtypes showed similar reduced OHRQoL, with 18.0 (cEDS, ±12.9), 19.5 (hEDS, ±12.0), and 15.2 (vEDS, ±11.6) OHIP points. For all other subtypes, the OHIP values varied. Participants waited an average of 21.8 years (±12.8) for their diagnosis. However, within the predominant subtypes, vEDS patients waited a noticeably shorter period of 13.3 years (±13.0; = 0.004) compared to participants with hEDS. Additionally, this study showed no difference in OHRQoL for the predominant subtypes regardless of whether a participant was a self-help group member (18.8, ±12.0) or not (19.4, ±12.1; = ).
本研究评估了不同类型埃勒斯-当洛斯综合征（EDS）患者的口腔健康相关生活质量（OHRQoL）差异。为进行统计学分析，参与者根据其亚型进行了分组：经典型 EDS（cEDS）、高活动型 EDS（hEDS）和血管型 EDS（vEDS）。其他所有亚型均进行了描述性分析。使用了自由文本问题和德国口腔健康影响简表（OHIP-14）短表。最终，纳入了 295 份问卷，代表了 10 种不同的 EDS 亚型。所有参与者的平均 OHIP 得分为 19.6 分（标准差（SD）±12.3）。最主要的亚型显示出相似的 OHRQoL 降低，OHIP 得分为 18.0（cEDS，±12.9）、19.5（hEDS，±12.0）和 15.2（vEDS，±11.6）。对于所有其他亚型，OHIP 值各不相同。参与者平均等待了 21.8 年（±12.8）才得到诊断。然而，在主要亚型中，vEDS 患者等待的时间明显更短，为 13.3 年（±13.0； = 0.004），明显短于 hEDS 患者。此外，无论参与者是否为自助团体成员（18.8，±12.0），主要亚型的 OHRQoL 均无差异（19.4，±12.1； = ）。
