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

Sabrina Wiemann, Nicolas Frenzel Baudisch, Rainer A. Jordan, Johannes Kleinheinz and Marcel Hanisch
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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

IJERPH, 2018, vol. 15, issue 7, 1-10

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.

Keywords: Rare diseases; quality of life; oral health; OHIP-14; OHRQoL; patient reported; outcome (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2018
References: View references in EconPapers View complete reference list from CitEc
Citations: View citations in EconPapers (2)

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