Children with Ectodermal Dysplasia: Oral Health and Quality of Life

Objectives: Despite evidence of the effects of dental conditions on quality of life (QoL), little has been done to examine dental conditions associated with ectodermal dysplasia (ED) and their effects on QoL in childhood. The aim of this pilot study was to begin to examine parent/child perspectives regarding oral health related QoL for children with ectodermal dysplasia. Methods: A cross-sectional study was carried out with families in the UK where at least one child aged 6–16 had oral or dental symptoms associated with ED. Data regarding the child's oral health related QoL was collected using the Child Oral Health Impact Profile (COHIP). Information about the child's oral health and associated functional and socio-emotional well-being, school environment and self-image was collected. Demographic data was collected from parents together with data concerning their perceptions of their child's oral and general health. Results: Completed questionnaires were returned by 44 families. 89% of children had problems with their teeth due to ED and 48% had a denture. Around 72% of children had problems eating. Parents of daughters were more concerned about the oral and dental consequences of ED than those who had sons. In all COHIP domains, boys reported higher levels of well-being and QoL than girls and younger children reported higher levels of well-being and QoL than those who were older. There was of an association between global health and overall COHIP score (r=0.677, p<.001) but a negative association between overall COHIP and parent's rating of the child's health (r=-0.419, p=0.019). Conclusions: Even when young, children with oral health and dental symptoms of ED report negative effects on QoL in different domains. Symptoms of ED are also associated with parental reports of the child's health. These negative effects should be considered by clinicians providing oral health care for these children.