Parents of children with rheumatic disease as peer counselors.

OBJECTIVE: A parent consultant program was established to promote active family involvement in the health care process and to provide parent-to-parent support, education, and training. METHODS: Parents of children with rheumatic disease were hired by 7 pediatric rheumatology centers to serve as role models and advocates for other parents whose children attended the clinics. In the clinic, the parent consultants provided support, advocacy, and education regarding specific nonmedical issues. At the local level, they assisted parents in obtaining community-based services, such as individual educational plans at school, local physical therapy, or access to recreational resources. RESULTS: Program impact was evaluated by an anonymous, mail-response questionnaire sent to parents who met with a parent consultant during a clinic visit for their child. Surveys were sent within 6 months of the initial parent consultant meeting; 257 questionnaires were mailed, 33% were returned. The majority of respondents (87%) felt their interaction with the parent consultant was helpful. The general support received and the specific information and/or assistance received were found to be equally useful by respondents. The majority of respondents (98%) stated they would recommend that other parents meet with the parent consultant. CONCLUSION: Parents of children with rheumatic disease are effective peer counselors, providing general support and specific assistance to enhance family involvement in care.

Ultrasonography in the study of prevalence and clinical evolution of popliteal cysts in children with knee effusions.

The prevalence and clinical evolution of popliteal cysts in children with knee arthritis is not well known. Using ultrasonography, we studied 44 children with clinically detectable knee effusions secondary to juvenile rheumatoid arthritis (n = 35), spondyloarthritis (n = 3) and psoriatic (n = 2), septic (n = 2) and lupus (n = 2) associated arthritis. Popliteal cysts, defined as anechoic or hypoechoic masses measuring at least 1 cm in 2 of 3 dimensions, were identified in 27 children (61%). Of the 30 children with bilateral arthritis, 11 (37%) had bilateral cysts. The size of the cysts ranged from 1 to 40 cm3 (median 3.0 cm3). There was a significant correlation between the presence of a cyst and popliteal pain and the size of the suprapatellar effusion (p less than 0.001) but not the child's age or underlying diagnosis (p greater than 0.05). A cohort of 25/27 children with cysts were followed prospectively with serial sonograms for 18-24 months. The resolution of the cyst followed that of the suprapatellar effusion in those children whose arthritis improved or resolved. Two children (8%) had rupture of the popliteal cysts. Popliteal cysts are readily documented in children with knee effusions using ultrasonography, and their presence and evolution correlates with the size of the suprapatellar effusion.

Demography of a regional pediatric rheumatology patient population. Affiliated Children's Arthritis Centers of New England.

OBJECTIVE: To examine the descriptive epidemiology of a regional cohort of children with rheumatic disease, and to document the variety and frequency of diseases encountered among pediatric rheumatology centers. METHODS: Pediatric rheumatology centers in southern New England participated in a prospective multicenter patient registry. All outpatients attending clinics at 8 pediatric rheumatology centers were enrolled as subjects during the 8-year period of study (n = 4585). Diagnostic criteria defined the rheumatic disease cases which were determined by clinical examination by a pediatric rheumatologist, and record linkage was achieved to avoid duplication of subjects. RESULTS: Rheumatic conditions were diagnosed in 1742 subjects. Juvenile rheumatoid arthritis (JRA) was the most frequently encountered rheumatic condition (53%), followed by spondyloarthropathy syndromes (13%), vasculitis (10%), systemic lupus erythematosus (SLE) (6%), isolated Raynaud's phenomenon (5%), dermatomyositis/polymyositis (DM/PM) (5%), and scleroderma (2%). The mean annual incidence of JRA, spondyloarthropathy syndromes, SLE and DM/PM among children referred to pediatric rheumatology centers in Massachusetts was 4.0, 2.0, 0.4 and 0.4 per 100,000 children at risk, respectively. Nonrheumatic conditions were diagnosed in 2843 subjects, among which musculoskeletal conditions were most frequent (56%) followed by infectious disorders (18%), psychogenic disorders (3%), fever of unknown origin (2%), and abnormal immune serology without a specific diagnosis (2%). CONCLUSION: The use of a multicenter patient registry was successful in allowing the collection of descriptive epidemiologic data on a large and well defined sample of children with rare disorders.

Methotrexate treatment of recalcitrant childhood dermatomyositis.

OBJECTIVE: To review the clinical course of 16 children with recalcitrant dermatomyositis (DM), who were treated with oral methotrexate (MTX) in addition to prednisone. METHODS: Sixteen patients with recalcitrant DM who were treated with MTX in addition to prednisone were followed between 1984 and 1990. The patients' clinical responses to treatment, including alterations in muscle strength and muscle enzyme levels, changes in prednisone dosage, and development of toxicity or complications were reviewed retrospectively. RESULTS: All 12 patients who received MTX for at least 8 months regained normal muscle strength. In 11 of the 12, the prednisone dosage could eventually be tapered to < or = 5 mg/day. Complications during MTX treatment required discontinuation of MTX in 5 patients, and were unrelated to the cumulative dose of the drug. Active disease recurred in 5 patients in whom MTX had been discontinued after apparent clinical remission had been achieved. CONCLUSION: MTX, in combination with prednisone, is a useful adjunct in the treatment of recalcitrant childhood DM. However, recurrence of disease after withdrawal of MTX suggests that the drug may have a suppressive, rather than a remittive, effect.