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

Author

Listed:
  • 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
    These authors contributed to the manuscript equally.)

  • Marcel Hanisch

    (Department of Oral and Maxillofacial Surgery, Hospital University Münster, 48149 Münster, Germany
    Department of Oral Surgery and Policlinical Ambulance, Faculty of Health, Witten/Herdecke University, Alfred-Herrhausen-Str. 45, 58448 Witten, Germany
    These authors contributed to the manuscript equally.)

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 ).

Suggested Citation

  • Julius Balke & Lauren Bohner & Jeanette Köppe & Jochen Jackowski & Ole Oelerich & Marcel Hanisch, 2023. "Oral Health-Related Quality of Life in Different Subtypes of Ehlers-Danlos Syndrome," IJERPH, MDPI, vol. 20(3), pages 1-13, January.
    • Handle: RePEc:gam:jijerp:v:20:y:2023:i:3:p:2218-:d:1047366
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    References listed on IDEAS

    as
    1. Annemarie Kühne & Johannes Kleinheinz & Jochen Jackowski & Jeanette Köppe & Marcel Hanisch, 2020. "Study to Investigate the Knowledge of Rare Diseases among Dentists, Orthodontists, Periodontists, Oral Surgeons and Craniomaxillofacial Surgeons," IJERPH, MDPI, vol. 18(1), pages 1-15, December.
    2. Ole Oelerich & Johannes Kleinheinz & Daniel R. Reissmann & Jeanette Köppe & Marcel Hanisch, 2020. "Correlation between Oral Health-Related Quality of Life and Objectively Measured Oral Health in People with Ehlers–Danlos Syndromes," IJERPH, MDPI, vol. 17(21), pages 1-11, November.
    3. Marcel Hanisch & Thomas Hoffmann & Lauren Bohner & Lale Hanisch & Korbinian Benz & Johannes Kleinheinz & Jochen Jackowski, 2019. "Rare Diseases with Periodontal Manifestations," IJERPH, MDPI, vol. 16(5), pages 1-19, March.
    4. Marcel Hanisch & Sabrina Wiemann & Lauren Bohner & Johannes Kleinheinz & Susanne Jung, 2018. "Association between Oral Health-Related Quality of Life in People with Rare Diseases and Their Satisfaction with Dental Care in the Health System of the Federal Republic of Germany," IJERPH, MDPI, vol. 15(8), pages 1-10, August.
    Full references (including those not matched with items on IDEAS)

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