To identify perceived unmet service needs of children with rheumatic diseases and their parents in a metropolitan area in order to better plan and coordinate services.
A pretested questionnaire was sent to 327 families identified from the caseloads and mailing lists of local agencies and a parent support group.
After 2 mailings and a telephone followup, 65.0% had responded, 34.4% with complete questionnaire data. The predominant diagnosis was juvenile rheumatoid arthritis (JRA), 58% of parents completing the questionnaire (children 45%) identified a need for additional services, most frequently education (newsletters/books) and teen support groups. Parents of male children selected more services. Problems in school, most commonly related to gym, mobility, and attendance, were reported by 45.5% of the school age children (by parents 49.1%).
Services for children with rheumatic diseases need to address problems in school, the educational needs of parents and children, and the support needs of the teen group. These results will be used by the agencies involved to plan a more coordinated approach to care for these children.