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

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.

Oral Conditions and Oral Health-Related Quality of Life of People with Ehlers-Danlos Syndromes (EDS): A Questionnaire-Based Cross-Sectional Study

“…We explain this ratio with two factors: women are more likely to participate in self-help groups than men, and are more willing to participate in studies than men. We have already noticed this in other studies on rare diseases [ 28 , 29 , 30 ].…”

Subjective Oral Health-Related Quality of Life and Objective Oral Health in People with Ectodermal Dysplasia

“…A new classification for ED was recently published, which classifies and organizes ED according to phenotype, genotype, and molecular signaling pathway ( Table 1 ) [ 2 ]. Despite the obvious symptoms, such as multiple missing teeth, there are frequently problems in diagnosing some forms of ED [ 11 , 12 ].…”

“…Oral manifestations are also associated with reduced oral health-related quality of life (OHRQoL) among people with ED. In a study conducted by our working group, the 14-item Oral Health Impact Profile (OHIP-14) score identified an inferior OHRQoL for people with ED, compared to the general population, in Germany [ 12 ]. However, the study findings indicated that previous research had only addressed the perceptions of OHRQoL from the perspective of study participants.…”

Zygomatic implant survival in 9 ectodermal dysplasia patients with 3.5‐ to 7‐year follow‐up

“…These factors are usually considered as unfavorable for the prognostic of healing in cases of bone grafts and dental implants. Ectodermal dysplasia has a negative impact on the oral health‐related quality of life of patients (Hanisch, Sielker, Jung, Kleinheinz, & Bohner, 2019). According to a systematic review by Wang et al in 2016, dental implants with or without bone augmentation are commonly used methods for oral rehabilitation of ED syndrome (Deshpande & Kumar, 2010a; Wang, He, Decker, Hu, & Zou, 2016).…”

“…These factors are usually considered as unfavorable for the prognostic of healing in cases of bone grafts and dental implants. Ectodermal dysplasia has a negative impact on the oral health-related quality of life of patients (Hanisch, Sielker, Jung, Kleinheinz, & Bohner, 2019).…”