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

Int J Environ Res Public Health. 2020 Dec 28;18(1):143. doi: 10.3390/ijerph18010143.

Abstract

Ectodermal dysplasia (ED) refers to a heterogeneous group of genetic diseases of the skin, skin appendages, and teeth. People with ED experience a poorer oral health-related quality of life (OHRQoL) compared to the general population. The aim of this study was to examine the OHRQoL of people with ED and to measure their objective physical oral health to confirm or disprove evidence of poorer oral health in this population. To determine OHRQoL, the German version of the 14-item Oral Health Impact Profile (OHIP-14G) was used. All the participants in the study were clinically examined, and the measured parameters were recorded using the Physical Oral Health Index (PhOX). In total, 10 male and 11 female participants, with an average age of 22.0 ± 9.0 years, were included in this study. The OHIP-14G summary score was 23.9 (±15.2) points (range: 0-56 points). The PhOX summary score was 61.2 (±5.1) points (range: 22-80 points). The findings indicated that both the OHRQoL and physical oral health of the participants were highly impaired and that their objective and subjective oral health were worse than those of the general population in Germany.

Keywords: EDS; OHIP-14; PhOX; ectodermal dysplasia; oral health; patient-reported outcome; rare diseases.

MeSH terms

  • Adolescent
  • Adult
  • Ectodermal Dysplasia / physiopathology*
  • Female
  • Germany
  • Humans
  • Male
  • Oral Health*
  • Quality of Life*
  • Surveys and Questionnaires
  • Young Adult