Satisfaction with primary health care received by families of children with developmental disabilities.

OBJECTIVE: To evaluate the perceptions of families of children with developmental disabilities regarding their primary care physicians and to determine if differences exist for different conditions.

METHODS: Mailed survey to families of children who had autism, physical disabilities (cerebral palsy or spina bifida) and mental retardation that included the Multidimensional Assessment of Parental Satisfaction for Children with Special Needs.

RESULTS: One hundred twenty-one families responded. Families rated physicians highest on their ability to keep up with new aspects of care and on their sensitivity to the needs of children. Parents had the lowest ratings for the primary care physicians' ability to put them in touch with other parents, understanding of the impact of the child's condition on the family, ability to answer questions about the child's condition, and information and guidance for prevention. Physicians' knowledge about complementary and alternative medicine and their qualifications to manage developmental disabilities ranked worse than neutral. Families with a child with autism had more spontaneous negative comments and rated their primary care physicians lower on several aspects of care. They requested more information on complementary and alternative medicine and more support in the community.

DISCUSSION: Families of children with developmental disabilities demonstrate dissatisfaction with several aspects of health care that can serve as areas for intervention by their health care providers. Families of children with autism in particular articulate dissatisfaction and voice unmet needs.