Parental perception on oral health-related quality of life and dental features of ectodermal dysplasia and isolated hypodontia in children

BACKGROUND: Children missing 6 or more permanent teeth often present with complex dental care needs and significant impacts on their oral health related quality of life (OHRQoL). The most important facet in the overall care for these children is the child’s own experience, but parents primarily make the decisions regarding their child’s dental management. Understanding the parental perspective could have a positive impact on planning and provision of care for these patient groups in the future. The study compared the parental perspectives on OHRQoL impact and dental experience for children with ectodermal dysplasia (ED), severe isolated hypodontia (IH), and matched controls following assessment of their dental features. DESIGN: A cross-sectional study of 172 children (mean age: 12.4 years old) was conducted; 86 with severe hypodontia (≥ 6 missing teeth; ED: 29; IH: 57) and 86 age and gender matched controls. The Parental-Caregiver Perceptions Questionnaire (P-CPQ), Family Impact Scale (FIS) and a supplemental questionnaire were used to gather information on parental perceptions of OHRQoL and dental experiences, respectively. Clinical examinations were used to assess and compare the dental features between children with ED, IH and their respective controls. RESULTS: Higher scores (p < 0.05) were found in P-CPQ and FIS scores between the children with ED, IH and their respective controls. P-CPQ scores for males with ED had a moderate correlation with functional limitations (R(s) = 0.576; p = 0.001*), oral symptoms (R(s) = 0.444; p = 0.016*) and overall QoL (R(s) = 0.499; p = 0.006*). The ED group reported earlier awareness of issues, the youngest attendance (3.24 years) and highest perceived number of appointments (“20 or more”; 58.6%). The mean number of missing teeth in the ED group was almost twice that of the IH group (ED: 20.17; IH: 10.68) and the median number of missing teeth (Radiographically: ED = 21; IH = 9; Clinically: ED = 11; IH = 6), was significantly greater in the ED group when compared to the IH group (p < 0.001*). CONCLUSION: Parents of children with ED and IH perceive a greater impact on QoL, for both the child and their family. Children with ED need earlier intervention and more extensive treatment than children with IH and their controls.