Autoren

Wiemann, Sabrina

Frenzel Baudisch, Nicolas

Jordan, A. Rainer

Kleinheinz, Johannes

Hanisch, Marcel


Schlagwörter

OHIP-14

OHRQoL

Rare diseases

Oral health

Outcome

Patient reported

Quality of life

Publikation — Zeitschriftenbeiträge

Titel
Oral Symptoms and Oral Health-Related Quality of Life in People with Rare Diseases in Germany

Untertitel
A Cross-Sectional Study

Titel kurz
Int J Environ Res Public Health

Titel Ausgeschrieben
International Journal of Environmental Research and Public Health

ISSN
1660-4601 (Electronic), 1660-4601 (Linking)

Jahr
2018

Ausgabe
15

Issue
7

Erscheinungsdatum
15.07.2018

DOI
10.3390/ijerph15071493

Oral Symptoms and Oral Health-Related Quality of Life in People with Rare Diseases in Germany

A Cross-Sectional Study

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.







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