An Intervention to Promote Autonomy and Competence in Transition-Aged Youth (IPACT)

A generation ago many individuals with a severe chronic illness did not live beyond childhood. Now 90% of individuals with chronic illness survive childhood and 750 000 adolescents and young adults with special healthcare needs (AYASHCN) in the U.S. transition to adulthood annually. As the illness becomes more complex the risk of morbidity and mortality associated with poorly planned healthcare transition (HCT) from pediatric to adult-based care increases.The broad long-term goal of the proposed project is decreased morbidity/mortality associated with inadequate preparation for HCT among AYASHCN by promoting competency and autonomy in medical self-management. The proposed project an Intervention to Promote Autonomy and Competence in Transition-Aged Youth (IPACT) will develop a multi-modal (video pamphlet discussion)/multi-level (AYASHCN Caregivers and healthcare providers) intervention based on Self-Determination Theory (SDT) (Aim 1) and assess the feasibility acceptability and preliminary efficacy of delivering the intervention to AYASHCN Caregivers and providers (Aims 2 & 3). A total of 80 AYASHCN aged 17 years (at least 15 each with inflammatory bowel renal rheumatic or neurologic disease) and 80 of their Caregivers will be recruited to participate in the Intervention starting in the second half of Year 1. Their outcomes will be compared to Historical Controls (72 18 year-old AYASHCN and 72 Caregivers) with these same conditions recruited during the first six months of Year 1 to avoid contamination. The intervention is designed to maximize the opportunities for AYASHCN to develop selfmanagement competence and autonomy as they prepare to transition to adult-based care: spending time alone with their provider understanding changes in consent to medical treatment that occur at age 18 and establishing access to a youth-accessed HER patient portal (MyChart). Sixteen providers will be consented to evaluate the provider training curriculum. Feasibility/ acceptability will be defined by recruitment/retention rates the proportions of participants that receive the intervention and complete all assessments and satisfaction. Preliminary efficacy will be determined through analysis of primary (self-efficacy in meeting with provider alone; understanding the consent for medical treatment process changes at age 18; MyChart use) and secondary (time to adult appointment health-related quality of life SDT constructs) outcomes comparing Intervention and Historical Control Groups. If successful this innovative project has the potential to impact the health and well-being of AYASHCN across many chronic illnesses.The proposed project addresses MCHB Strategic Research Issues I-III Title V MCH Services Block Grant National Performance Domain 12 (Transition) HRSA/MCHB clinical priority (mental health) and 8 HP2020 Objectives.