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Oral Symptoms and Oral Health-Related Quality of Life in People with Rare Diseases in Germany: A Cross-Sectional Study

Author

Listed:
  • 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)

  • Nicolas Frenzel Baudisch

    (Institute of German Dentists (IDZ), Research Focus: Sociology of medicine and Health Psychology, Universitätsstraße 73, D-50931 Köln, Germany)

  • Rainer A. Jordan

    (Institute of German Dentists (IDZ), Research Focus: Sociology of medicine and Health Psychology, Universitätsstraße 73, D-50931 Köln, 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)

  • 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)

Abstract

Background : The aim of this study was to collect information on oral health-related quality of life (OHRQoL) in people with rare diseases. Methods : A questionnaire comprising free text questions and the German version of the standardized Oral Health Impact Profile-14 (OHIP-14) questionnaire on OHRQoL was developed. All participants who indicated oral symptoms in the questionnaire were included in a cluster analysis. Different cluster analyses were performed (Ward’s, k-Means) to find symptom profile groups in the data. Results : A total of 484 questionnaires with 96 rare diseases were included in the study. The most reported symptoms were anomalies of the tooth formation, dysgnathia, changes in number of the teeth, and malocclusions. The OHIP mean values of the five resulting symptom clusters ranged from 15.1 to 19.9, which is very high compared to the general population in Germany, which has a mean value of 4.09. Discussion : All investigated symptoms show a negative association with OHRQoL, but the strongest were for symptoms of the oral mucosa and periodontal diseases. All the symptoms described in this cluster analysis can lead to considerably higher mean values of the OHIP total score among people with rare disease and thus to worse OHRQoL than reported in the general population.

Suggested Citation

  • 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.
    • Handle: RePEc:gam:jijerp:v:15:y:2018:i:7:p:1493-:d:158056
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    References listed on IDEAS

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    1. Damian Drążewski & Małgorzata Grzymisławska & Katarzyna Korybalska & Natasza Czepulis & Marian Grzymisławski & Janusz Witowski & Anna Surdacka, 2017. "Oral Health Status of Patients with Lysosomal Storage Diseases in Poland," IJERPH, MDPI, vol. 14(3), pages 1-10, March.
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    Cited by:

    1. 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.
    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.

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