Oral Health-Related Quality of Life in Different Subtypes of Ehlers-Danlos Syndrome

Julius Balke, Lauren Bohner, Jeanette Köppe, Jochen Jackowski, Ole Oelerich () and Marcel Hanisch ()
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Julius Balke: Department for Prosthodontics and Biomaterials, University Hospital Münster, D-48149 Münster, Germany
Lauren Bohner: Department of Oral and Maxillofacial Surgery, Hospital University Münster, 48149 Münster, Germany
Jeanette Köppe: Institute of Biostatistics and Clinical Research, University of Münster, Schmeddingstraße 56, D-48149 Münster, Germany
Jochen Jackowski: Department of Oral Surgery and Policlinical Ambulance, Faculty of Health, Witten/Herdecke University, Alfred-Herrhausen-Str. 45, 58448 Witten, Germany
Ole Oelerich: Department for Prosthodontics and Biomaterials, University Hospital Münster, D-48149 Münster, Germany
Marcel Hanisch: Department of Oral and Maxillofacial Surgery, Hospital University Münster, 48149 Münster, Germany

IJERPH, 2023, vol. 20, issue 3, 1-13

Abstract: 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; p = 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; p = 0.327 ).

Keywords: Ehlers-Danlos Syndromes; EDS; rare disease; oral health; OHIP-14; oral health-related quality of life; OHRQoL (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2023
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