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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

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)

  • Sabrina Wiemann

    (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)

  • 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)

  • 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)

Abstract

Background: The aim of this study was to examine the current dental care situation in Germany from the perspective of those affected by a rare disease, especially concerning their satisfaction with the German dental health care system, and thus assess the relationship between their perspective and their oral health-related quality of life (OHRQoL). Methods: A questionnaire regarding their experiences with the dental assistance and the health care system, such as the OHIP-14, was sent to the member associations of the organization of self-help groups for rare diseases ACHSE e.V. The correlation between OHIP-14 values and patient’s perspective was statistically analyzed by the non-parametric Tau de Kendall test ( p < 0.05). Results: There was a statistically significant correlation between the OHIP score and the patient’s perspective regarding dental assistance and health care system ( p < 0.05). For those surveyed who were satisfied with the support of the health care system, an average OHIP score of 8.54 ± 10.45 points (range: 0–48) was determined. The group that did not feel sufficiently supported by the health care system had an average OHIP score of 16.07 ± 13.43 points (range: 0–56). Discussion: The majority of respondents with rare diseases are dissatisfied with the German health care system and its support with regard to dental care.

Suggested Citation

  • 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.
    • Handle: RePEc:gam:jijerp:v:15:y:2018:i:8:p:1732-:d:163487
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    References listed on IDEAS

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    1. 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.
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    Cited by:

    1. 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.
    2. 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.
    3. Flavia Rabello & Mariana Laís Silva Celestino & Natália Cristina Ruy Carneiro & Jennifer Reis-Oliveira & Heloísa Vieira Prado & Mauro Henrique Nogueira Guimarães de Abreu & Ana Cristina Borges-Oliveir, 2024. "Oral Problems in Brazilian Individuals with Rare Genetic Diseases That Affect Skeletal Development," IJERPH, MDPI, vol. 21(9), pages 1-10, September.

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    1. 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.

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