The United States pediatric population with chronic health conditions is expanding. Currently, this demographic comprises 12-18% of the American child and youth population. Affected children often receive fragmented, uncoordinated care. Overall, the American health care delivery system produces modest outcomes for this population. Poor, uninsured and minority children may be at increased risk for inferior coordination of services. Further, the United States health care delivery system is primarily organized for the diagnosis and treatment of acute conditions. For pediatric patients with chronic health conditions, the typical acute problem-oriented visit actually serves as a barrier to care. The biomedical model of patient education prevails, characterized by unilateral transfer of medical information. However, the evidence basis for improvement in disease outcomes supports the use of the chronic care model, initially proposed by Dr. Edward Wagner. Six inter-related elements distinguish the success of the chronic care model, which include self-management support and care coordination by a prepared, proactive team. United States health care lacks a coherent policy direction for the management of high cost chronic conditions, including rheumatic diseases. A fundamental restructure of United States health care delivery must urgently occur which places the patient at the center of care. For the pediatric rheumatology workforce, reimbursement policies and the actions of health plans and insurers are consistent barriers to chronic disease improvement. United States reimbursement policy and overall fragmentation of health care services pose specific challenges for widespread implementation of the chronic care model. Team-based multidisciplinary care, care coordination and self-management are integral to improve outcomes. Pediatric rheumatology demand in the United States far exceeds available workforce supply. This article reviews the career choice decision-making process at each medical trainee level to determine best recruitment strategies. Educational debt is an unexpectedly minor determinant for pediatric residents and subspecialty fellows. A two-year fellowship training option may retain the mandatory scholarship component and attract an increasing number of candidate trainees. Diversity, work-life balance, scheduling flexibility to accommodate part-time employment, and reform of conditions for academic promotion all need to be addressed to ensure future growth of the pediatric rheumatology workforce.
Keywords: pediatric rheumatology; pediatric subspecialty; policy; workforce.