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.
Highlights
Ectodermal dysplasia describes a rare heterogeneous group of hereditary, congenital malformations involving developmental dystrophies of ectodermal structures affecting about one in 5000 to 10,000 people [1].Ectodermal derivatives include hair, teeth, nails, sweat glands, sebaceous glands, mammary glands and the eyelash glands [2,3,4,5]
The study was designed as a cross-sectional questionnaire cohort study in people with ectodermal dysplasia to evaluate their respective oral health-related quality of life (OHRQoL)
A questionnaire was developed for this purpose, which consisted of questions on age, sex, age at diagnosis, the time period between the first symptoms and the diagnosis of the disease, oral symptoms, difficulties in finding a dentist for treatment and satisfaction with the level of support provided by the German health care system with regard to dental care
Summary
Ectodermal dysplasia describes a rare heterogeneous group of hereditary, congenital malformations involving developmental dystrophies of ectodermal structures affecting about one in 5000 to 10,000 people [1].Ectodermal derivatives include hair, teeth, nails, sweat glands, sebaceous glands, mammary glands and the eyelash glands [2,3,4,5]. Ectodermal dysplasia describes a rare heterogeneous group of hereditary, congenital malformations involving developmental dystrophies of ectodermal structures affecting about one in 5000 to 10,000 people [1]. Oral manifestations of the various subtypes of ectodermal dysplasia include dental agenesis (hypodontia, oligodontia, anodontia), shape anomalies of the teeth such as microdontia or conical teeth [8] or reduced salivary flow rates [9,10], and subtypes, including cleft formation, like. Ectodermal dysplasia describes a heterogeneous group of hereditary, congenital malformations involving developmental dystrophies of ectodermal structures. 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. The average age of the female participants at the time of diagnosis was 17.02 years The average OHIP-14 overall score for female participants was 12.23 points (SD: 12.39), for male participants an average
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