Purpose: The purpose of this study was to conduct the first known large scale survey of parents of children with special health care needs (CSHCN) to determine their child's: oral health status; access to dental care; perceived barriers (environmental/system and nonenvironmental/family); and oral health quality of life, accounting for each child's medical diagnosis and severity of diagnosis.
Methods: A 72-item survey was sent to 3760 families of CSHCN throughout urban and rural Massachusetts.
Results: The study yielded 1,128 completed surveys. More than 90% of the children had seen a dentist within the past year; 66% saw a pediatric dentist, and 21% needed intense behavioral interventions. Although most families had high education levels, private dental insurance, and above average incomes, 20% of CSHCN had an unmet dental need. Children with craniofacial anomalies had twice as many unmet needs and children with cystic fibrosis had fewer unmet needs. Children with cerebral palsy, autism, developmental delay, and Down syndrome had more aversions to dental treatment, more treatment complications posed by their medical conditions, and more difficulty finding a dentist willing to provide care. Children with cystic fibrosis, metabolic disorders, or hemophilia encountered fewer barriers to care.
Conclusions: The data paint a picture of high unmet dental needs with subpopulations of children with special health care needs who are more at risk for system barriers and internal family barriers to care based on their medical diagnoses.