A hospital-wide initiative to support medically complex adolescents and young adult’s transition experience: The process of a systems approach to transition (pp. 561-574)
Authors: Michelle Forcier, Sarah Ahlm, Rebecca Boudos, Parag Shah, Shubhra (Sue) Mukherjee, Kathy Zebracki, and Jill Weissberg-Benchell
Abstract: Children with complex medical conditions who previously did not survive into puberty and their adult years now face the unique challenge and interactions of chronic disease management and the developmental demands of adolescence. Pediatric centers and subspecialty pediatricians that typically care for these youth with special health care needs (YSHCN) are more traditionally oriented towards younger populations and are additionally adapting to this shift in both demographics and disease management. This paper overviews a hospital-wide approach to improve services for medically complex adolescent and young adult patients. This urban tertiary care hospital began a multi-specialty, multi-disciplinary intervention to improve two important elements of transition care: improved adolescent focused health services and preparation of youth for the eventual transfer to adult health care systems. This hospital-wide endeavor included: a centralized Transition Team; institutional funding to support pilot projects; and a multidisciplinary Transition Steering Committee. Teams from liver and kidney transplant, epilepsy, oncology, spina bifida, cardiology, diabetes, infectious disease, and rheumatology participated in the program. Pilot projects developed needs assessments; screening for risk and wellness; educational modules; and partnerships with adult providers. This paper will describe one systems-based approach to transition.