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 OHRQo...
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doaj-1f5e280e1c174a3a81b6ddf1acba79362020-11-25T00:57:39ZengMDPI AGInternational Journal of Environmental Research and Public Health1660-46012018-07-01157149310.3390/ijerph15071493ijerph15071493Oral Symptoms and Oral Health-Related Quality of Life in People with Rare Diseases in Germany: A Cross-Sectional StudySabrina Wiemann0Nicolas Frenzel Baudisch1Rainer A. Jordan2Johannes Kleinheinz3Marcel Hanisch4Department 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, GermanyInstitute of German Dentists (IDZ), Research Focus: Sociology of medicine and Health Psychology, Universitätsstraße 73, D-50931 Köln, GermanyInstitute of German Dentists (IDZ), Research Focus: Sociology of medicine and Health Psychology, Universitätsstraße 73, D-50931 Köln, GermanyDepartment 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, GermanyDepartment 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, GermanyBackground: 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.http://www.mdpi.com/1660-4601/15/7/1493Rare diseasesquality of lifeoral healthOHIP-14OHRQoLpatient reportedoutcome |
collection |
DOAJ |
language |
English |
format |
Article |
sources |
DOAJ |
author |
Sabrina Wiemann Nicolas Frenzel Baudisch Rainer A. Jordan Johannes Kleinheinz Marcel Hanisch |
spellingShingle |
Sabrina Wiemann Nicolas Frenzel Baudisch Rainer A. Jordan Johannes Kleinheinz Marcel Hanisch Oral Symptoms and Oral Health-Related Quality of Life in People with Rare Diseases in Germany: A Cross-Sectional Study International Journal of Environmental Research and Public Health Rare diseases quality of life oral health OHIP-14 OHRQoL patient reported outcome |
author_facet |
Sabrina Wiemann Nicolas Frenzel Baudisch Rainer A. Jordan Johannes Kleinheinz Marcel Hanisch |
author_sort |
Sabrina Wiemann |
title |
Oral Symptoms and Oral Health-Related Quality of Life in People with Rare Diseases in Germany: A Cross-Sectional Study |
title_short |
Oral Symptoms and Oral Health-Related Quality of Life in People with Rare Diseases in Germany: A Cross-Sectional Study |
title_full |
Oral Symptoms and Oral Health-Related Quality of Life in People with Rare Diseases in Germany: A Cross-Sectional Study |
title_fullStr |
Oral Symptoms and Oral Health-Related Quality of Life in People with Rare Diseases in Germany: A Cross-Sectional Study |
title_full_unstemmed |
Oral Symptoms and Oral Health-Related Quality of Life in People with Rare Diseases in Germany: A Cross-Sectional Study |
title_sort |
oral symptoms and oral health-related quality of life in people with rare diseases in germany: a cross-sectional study |
publisher |
MDPI AG |
series |
International Journal of Environmental Research and Public Health |
issn |
1660-4601 |
publishDate |
2018-07-01 |
description |
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. |
topic |
Rare diseases quality of life oral health OHIP-14 OHRQoL patient reported outcome |
url |
http://www.mdpi.com/1660-4601/15/7/1493 |
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