Practical Steps to Help Transition Pediatric Patients to Adult Care

Abstract

* Abbreviations: IDD — : intellectual and developmental disability IEP — : individualized education plan The transition from pediatric to adult care is a complicated process for many patients and families. For adolescents and young adults with a chronic condition, in which gaps in care can lead to significant health consequences, the transition to adult care can be especially problematic. Patients with intellectual and developmental disabilities (IDDs) and their families face additional challenges during the transition because the patients may not be fully independent as adults and families need to account for this during the transition.1 More providers are working with families before they leave pediatric care, but the transition process does not end with a patient’s first appointment in adult care. Patients and families need to get comfortable with new doctors and get established with new services. Recently published guidelines on transition highlight the importance of supporting transition for patients and families after their transfer to adult care.1 Marie Crawford is a mother of 2 sons with IDDs: Peter and Patrick. Peter has Down syndrome and a colostomy from surgery to repair his Hirschsprung disease. Patrick has autism and communicates nonverbally. They are in their 20s and have transferred to adult providers. Through her work with the state- and county-level service providers for adults with disabilities, Mrs Crawford has also helped other families navigate the transition. Her experience helping her sons and other families navigate the transition to adult care provides some important insights into life after transfer to adult care for patients with IDDs and their families. Peter, as the person experiencing transition to new providers, also has important insights to provide. Dr Garey Noritz is a complex care … Address correspondence to Laura C. Hart, MD, MPH, Nationwide Children’s Hospital, 700 Children’s Dr, Columbus, OH 43205. E-mail: laura.hart{at}nationwidechildrens.org