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Self-Assessment of Oral Health-Related Quality of Life in People with Ectodermal Dysplasia in Germany

Author

Listed:
  • Marcel Hanisch

    (Department of Cranio-Maxillofacial Surgery, Research Unit Rare Diseases with Orofacial, Manifestations (RDOM), University Hospital Münster, Albert-Schweitzer-Campus 1, Building W 30, D-48149 Münster, Germany)

  • Sonja Sielker

    (Department of Cranio-Maxillofacial Surgery, Research Unit Rare Diseases with Orofacial, Manifestations (RDOM), University Hospital Münster, Albert-Schweitzer-Campus 1, Building W 30, D-48149 Münster, Germany)

  • Susanne Jung

    (Department of Cranio-Maxillofacial Surgery, Research Unit Rare Diseases with Orofacial, Manifestations (RDOM), University Hospital Münster, Albert-Schweitzer-Campus 1, Building W 30, D-48149 Münster, Germany)

  • Johannes Kleinheinz

    (Department of Cranio-Maxillofacial Surgery, Research Unit Rare Diseases with Orofacial, Manifestations (RDOM), University Hospital Münster, Albert-Schweitzer-Campus 1, Building W 30, D-48149 Münster, Germany)

  • Lauren Bohner

    (Department of Cranio-Maxillofacial Surgery, Research Unit Rare Diseases with Orofacial, Manifestations (RDOM), University Hospital Münster, Albert-Schweitzer-Campus 1, Building W 30, D-48149 Münster, Germany)

Abstract

Background: Ectodermal dysplasia describes a heterogeneous group of hereditary, congenital malformations involving developmental dystrophies of ectodermal structures. The aim of this study was to analyse the oral health-related quality of life (OHRQoL) in people with ectodermal dysplasia and to evaluate the influence of different variables. Methods: The study was designed as an anonymous epidemiological survey study among people with ectodermal dysplasia to evaluate oral symptoms, satisfaction with the health system and their respective OHRQoL using the validated German version of the OHIP-14 (Oral Health Impact Profile) questionnaire. Results: When asked about oral symptoms, 110 of the participants provided responses, of which 109 (99.09%) described oral symptoms. The average age of the female participants at the time of diagnosis was 17.02 years (range: 0 to 48 years), the average age of men was 5.19 years (range: 0 to 43 years). The average OHIP-14 overall score for female participants was 12.23 points (SD: 12.39), for male participants an average OHIP score of 11.79 points was recorded (SD: 11.08 points). Difficulty in finding a dentist ( p = 0.001), and the dissatisfaction with the health system ( p = 0.007) showed a negative impact on the OHRQoL. Conclusion: People with ectodermal dysplasia rate their OHRQoL worse than is usually prevalent in the normal German population (4.09 points); women are diagnosed with “ectodermal dysplasia” later than men. Participants who reported difficulties in finding a dentist for treatment exhibited higher OHIP values. Likewise, dissatisfaction with the health system demonstrated a negative impact on the oral health-related quality of life.

Suggested Citation

  • Marcel Hanisch & Sonja Sielker & Susanne Jung & Johannes Kleinheinz & Lauren Bohner, 2019. "Self-Assessment of Oral Health-Related Quality of Life in People with Ectodermal Dysplasia in Germany," IJERPH, MDPI, vol. 16(11), pages 1-9, May.
    • Handle: RePEc:gam:jijerp:v:16:y:2019:i:11:p:1933-:d:235999
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    References listed on IDEAS

    as
    1. Marcel Hanisch & Sabrina Wiemann & Susanne Jung & Johannes Kleinheinz & Lauren Bohner, 2018. "Oral Health-Related Quality of Life in People with Rare Hereditary Connective Tissue Disorders: Marfan Syndrome," IJERPH, MDPI, vol. 15(11), pages 1-8, October.
    2. Sabrina Wiemann & Nicolas Frenzel Baudisch & Rainer A. Jordan & Johannes Kleinheinz & Marcel Hanisch, 2018. "Oral Symptoms and Oral Health-Related Quality of Life in People with Rare Diseases in Germany: A Cross-Sectional Study," IJERPH, MDPI, vol. 15(7), pages 1-10, July.
    3. 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.
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    Citations

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    Cited by:

    1. 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.
    2. Nils Niekamp & Johannes Kleinheinz & Daniel R. Reissmann & Lauren Bohner & Marcel Hanisch, 2020. "Subjective Oral Health-Related Quality of Life and Objective Oral Health in People with Ectodermal Dysplasia," IJERPH, MDPI, vol. 18(1), pages 1-10, December.
    3. Lauren Bohner & Shankeeth Vinayahalingam & Johannes Kleinheinz & Marcel Hanisch, 2022. "Digital Implant Planning in Patients with Ectodermal Dysplasia: Clinical Report," IJERPH, MDPI, vol. 19(3), pages 1-9, January.

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