School attendance and patterns, special services and special needs in pediatric patients with rheumatic diseases: Results of a multicenter study

Abstract

Abstract This study represents the first multicenter study of school attendance and service needs of children with rheumatic disease. Utilizing a standardized form in seven pediatric rheumatology centers, over 90% of 1135 patients were reported as attending school full time with an average of 3.9 days absent from school for health reasons during a 2‐month period (national average, 1.1 days). At least one‐third of the patients with juvenile rheumatoid arthritis, systemic lupus erythematosus, dermatomyositis, spondyloarthropathy, scleroderma, and vasculitis exceeded 1.25 days absent in 2 months (national average, + 2 SEM). Less than one‐half of the eligible school‐aged patients with rheumatic disease are receiving school‐based physical or occupational therapy and adaptive physical education services more than a decade after the passage of P.L. 94–142 (the Education for All Handicapped Children Act of 1975). Only 8% of rheumatic disease patients at least 15 years of age are receiving services by vocational and rehabilitation workers. This study documents both the ongoing need for efforts to increase school services for children with rheumatic disease and the increased frequency of school absence in childhood rheumatic disease. Suggestions are made for improving habilitative and rehabilitative school services.