The objective of this study was to assess the perceived oral health-related quality of life (OHQoL) of adolescents affected with one of the ectodermal dysplasias (EDs).
Data were collected from 2003 to 2007 in a cross-sectional study of a convenience sample of individuals affected by ED (n = 35) using the Child Perceptions Questionnaire (CPQ11–14) for children and the Parent-Caregiver Perceptions Questionnaire for their caregivers. The main findings of this study were that individuals who were affected with ED in the older age group (15- to 19-year-olds) perceived more functional problems than younger individuals (11- to 14-year-olds) (p= .04). Females with ED (n = 13) perceived more emotional problems than males (n = 22; p= .01). Although caregivers tended to report slightly higher OHQoL scores (indicating worse OHQoL), no significant differences were observed between children’s and parents’ total OHQoL and individual domains’ median scores (p > .05). Thus, the perceptions of oral health and well-being may vary by age and gender for children who have ED. Caution is warranted concerning using parents as proxies for their children when assessing the child’s OHQoL.