As a result of advances in medical treatments 90% of U.S. children with chronic illness now survive childhood and 750 000 youth with special health care needs transition to adulthood annually. However as the complexity of the condition increases transition to adult health care becomes more problematic resulting in increased morbidity and mortality. Rigorous research on interventions to promote successful transfer to adult-based care is lacking. The broad long-term objective of the proposed project is decreased morbidity/mortality associated with poor health care transition (HCT) by promoting in transition-age youth (TAY) the development of specific self-management and self-advocacy skills needed to effectively function within the adult health care system. Young adults with special health care needs who have successfully transitioned to adult-based care will be trained to deliver a group-based peer-mentored intervention 'Project IMPAACT (Innovative Mentor Program for Achieving Autonomy and Competence in Transition)' using a Motivational Interviewing approach to enhance health care knowledge and skills of the TAY. The Specific Aims of this proposal are to: (Aim 1) Develop a group-based peer mentor intervention based on Self Determination Theory informed by qualitative research with TAY and caregivers and reviewed by TAY and Caregiver Community Advisory Boards and (Aim 2) Assess the feasibility acceptability and preliminary efficacy of delivering the intervention to TAY as well as participation in a randomized trial by recruiting and randomly assigning 150 TAY ages 17-21 years (50 with inflammatory bowel disease 50 with renal disease and 50 with rheumatic disease) to the intervention or usual care enhanced with written transition materials. RCT participants will complete baseline post-intervention 6- and 9-month follow-up assessments with continued monitoring through transition to adult care to assess outcomes. Feasibility/acceptability will be defined by RCT recruitment/retention rates the proportion of intervention sessions attended/implemented the proportion of participants who complete all assessments and participant satisfaction. Preliminary efficacy will be determined through analysis of primary (transition readiness) and secondary (healthcare autonomy competence and autonomy support; time to first adult appointment; quality of life; and global health) outcomes by comparing intervention and comparison groups overall as well as stratified by disease condition. Results will provide preliminary data for a large RCT assessing efficacy where the outcomes will be time to and attendance at first two adult appointments and changes in health status. If successful this innovative peer-mentoring model for improving HCT to adult providers for TAY has the potential to impact both adolescents and young adults across many chronic health conditions in a variety of health care and work settings. This project will address MCHB Strategic Research Issues I-III Title V MCH Services Block Grant National Performance Domains 12 (Transition) & 15 (Insurance) and at least 10 HP2020 Objectives.
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