The development of a transition medical home utilizing the individualized transition plan (ITP) model for patients with complex diseases of childhood

Abstract

BackgroundAdvances in medicine and technology, have enabled greater numbers of children with complex illness to survive into adulthood. Adolescents with these conditions are at high risk for adverse outcomes when transitioning to adult health care. The “Staging Transition for Every Patient” (STEP) Program was developed to systematically improve the transition from pediatric to adult healthcare. ObjectiveThis article details the development of the STEP program and the novel use of “Individualized Transition Plans” (ITP) in the clinic setting. MethodsA provider needs’ assessment of the existing transition services among youth with specific diagnoses was performed, a steering committee was developed that created a transition policy, and a medical home within the adult system was established with an interdisciplinary approach. The ITP focuses on 5 individualized goals, it was developed and tested with the first-year cohort of patients. ResultsIn the initial needs assessment, 7 of 35 diagnoses were found to have an effective transition plan. The STEP program partnered with departments across the adult facility to conduct 267 interdisciplinary patient visits. In the first year, 169 new patients were seen in the clinic. The average age was 23.0 ± 4.1 years old. The ITP goals included referrals to adult specialists, advanced care planning, career and education, transition readiness, caregiver burden, and an emergency sick plan. ConclusionThere is a need for organized transition care for medically complex youth. The STEP program answers that need by addressing the unique needs of each patient. Individualized transition planning builds trust and addresses multiple domains of health.