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

Author:

Balke Julius1,Bohner Lauren2ORCID,Köppe Jeanette3,Jackowski Jochen4,Oelerich Ole1ORCID,Hanisch Marcel24

Affiliation:

1. Department for Prosthodontics and Biomaterials, University Hospital Münster, D-48149 Münster, Germany

2. Department of Oral and Maxillofacial Surgery, Hospital University Münster, 48149 Münster, Germany

3. Institute of Biostatistics and Clinical Research, University of Münster, Schmeddingstraße 56, D-48149 Münster, Germany

4. Department of Oral Surgery and Policlinical Ambulance, Faculty of Health, Witten/Herdecke University, Alfred-Herrhausen-Str. 45, 58448 Witten, Germany

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).

Publisher

MDPI AG

Subject

Health, Toxicology and Mutagenesis,Public Health, Environmental and Occupational Health

Reference36 articles.

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2. (2022, August 16). Commission of the European Communities Communication from the Commission to the European Parliament, the Council, the European Economic and Social Committee and the Committee of the Regions on Rare Diseases: Europe’s Challenges. Available online: https://ec.europa.eu/health/ph_threats/non_com/docs/rare_com_en.pdf.

3. The 2017 International Classification of the Ehlers-Danlos Syndromes;Malfait;Am. J. Med. Genet.,2017

4. International Nosology of Heritable Disorders of Connective Tissue, Berlin, 1986;Beighton;Am. J. Med. Genet.,1988

5. Ehlers-Danlos Syndrome (EDS) Focusing on Oral Symptoms: A Questionnaire Study;Hagberg;Orthod. Craniofac. Res.,2004

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