Pediatric rheumatology clinic populations in the United States: results of a 3 year survey. Pediatric Rheumatology Database Research Group

OBJECTIVE: To describe the patient population referred to pediatric rheumatology centers (PRC) across the US 1992-95; and to compare these results to data on regional PRC populations. METHODS: A Pediatric Rheumatology Disease Registry was established in 1992. Data on new patients seen at 25 PRC across the US were submitted to the registry for a 36 month period from 1992 through 1995. RESULTS: A total of 12,939 patients were submitted to the registry. Of these patients, 5245 (40.5%) had rheumatological diagnoses. Patients with juvenile rheumatoid arthritis were the largest group of the patient population (2071 patients-16% of total diagnoses). There were 1568 patients with other forms of childhood arthritis (12%), 1172 with collagen vascular diseases (9%), and 434 with vasculitis (3.3%). Over 50% of the patients had nonrheumatologic diagnoses, including 1577 with idiopathic pain syndromes (12%). Other diagnoses included infections, orthopedic conditions, and malignancies. Fourteen percent of the patients were not given a diagnosis at the time of the initial visit. CONCLUSION: PRC see a wide variety of patients. Although the majority do have rheumatologic conditions, over 50% of new patients have conditions not autoimmune in origin. Fourteen percent of the patients cannot be diagnosed at the time of their first clinic visit, requiring time to see the evolution of their symptoms before a definitive diagnosis can be assigned.