Self-Assessment of Oral Health-Related Quality of Life in People With Ectodermal Dysplasia in Germany

Hanisch Marcel, Sielker Sonja, Jung Susanne, Kleinheinz Johannes, Bohner Lauren

Research article (journal) | Peer reviewed

Abstract

Background: Ectodermal dysplasia describes a heterogeneous group of hereditary, congenital malformations involving developmental dystrophies of ectodermal structures. The aim of this study was to analyse the oral health-related quality of life (OHRQoL) in people with ectodermal dysplasia and to evaluate the influence of different variables. Methods: The study was designed as an anonymous epidemiological survey study among people with ectodermal dysplasia to evaluate oral symptoms, satisfaction with the health system and their respective OHRQoL using the validated German version of the OHIP-14 (Oral Health Impact Profile) questionnaire. Results: When asked about oral symptoms, 110 of the participants provided responses, of which 109 (99.09%) described oral symptoms. The average age of the female participants at the time of diagnosis was 17.02 years (range: 0 to 48 years), the average age of men was 5.19 years (range: 0 to 43 years). The average OHIP-14 overall score for female participants was 12.23 points (SD: 12.39), for male participants an average OHIP score of 11.79 points was recorded (SD: 11.08 points). Difficulty in finding a dentist (p = 0.001), and the dissatisfaction with the health system (p = 0.007) showed a negative impact on the OHRQoL. Conclusion: People with ectodermal dysplasia rate their OHRQoL worse than is usually prevalent in the normal German population (4.09 points); women are diagnosed with "ectodermal dysplasia" later than men. Participants who reported difficulties in finding a dentist for treatment exhibited higher OHIP values. Likewise, dissatisfaction with the health system demonstrated a negative impact on the oral health-related quality of life.

Details about the publication

JournalInternational journal of environmental research and public health (Int J Environ Res Public Health)
Volume16
Issue11
StatusPublished
Release year2019 (31/05/2019)
Language in which the publication is writtenEnglish
DOI10.3390/ijerph16111933
Link to the full texthttps://www.mdpi.com/1660-4601/16/11/1933
KeywordsOHIP-14; OHRQoL; ectodermal dysplasia; oral health related quality of life; patient-related outcome; rare diseases

Authors from the University of Münster

Hanisch, Marcel Rene
Clinic for Cranio-Maxillofacial Surgery
Jung, Susanne
Clinic for Cranio-Maxillofacial Surgery
Kleinheinz, Johannes
Clinic for Cranio-Maxillofacial Surgery
Sielker, Sonja
Clinic for Cranio-Maxillofacial Surgery