Improving the Transition from Pediatric to Adult Care for Adolescents and Young Adults with Autoinflammatory Diseases

Abstract

The genetic basis for most autoinflammatory diseases (AIDs) makes them unique in rheumatology because most patients will be diagnosed during childhood and will continue to have active disease during adulthood. As a result, adolescents and young adults (AYAs) will need to transition to an adult rheumatologist at some point during their medical care. Transition comes at a particularly sensitive time for patients with AIDs, but it also brings opportunities for emotional growth and social development. In this chapter, we review essential skills that must be mastered by AYAs with AIDs to facilitate the process of transition, including the development of self-management skills and medical decision-making. We also address important aspects of the medical care for patients with AIDs, including long-term sequelae, issues related to pregnancy, primary care, stress management, attending college, and the development of a transition plan for pediatric and adult rheumatology practices.