Introduction During their development, Adolescents and Young Adults with Chronic Health Conditions (AYACHC) develop decision-making strategies and autonomy in illness self-management, and require supportive partnerships with parents and providers. This report focuses on a multi-level intervention produced with input from and targeted to AYACHC, parents, and providers, to promote autonomy and competence in transition-aged youth (IPACT).

Methods 165 dyads (18-year-old AYACHC and parents) participated in either 1) a three-session intervention (based on the socioecological model and Self-Determination Theory [SDT]), or 2) historical control (standard care) group to compare outcomes of their perceived competence in and knowledge of healthcare transition/self-management; self-efficacy; and SDT constructs. Twenty-two providers from four pediatric clinical services participated in a two-session virtual intervention that supported AYACHC autonomy practicing skills. Intervention feasibility, acceptability, and efficacy metrics were assessed/summarized.

Results 100% of IPACT sessions were implemented as planned (feasibility). Over 80% of AYACHC, parents, and providers were very satisfied with IPACT sessions (acceptability). With respect to efficacy, AYACHC pre/post-IPACT scores increased (p<0.05) and participants in the IPACT versus control groups were higher (p<0.05) across all constructs except provider support for autonomy. 89% of providers thought IPACT should be required for all providers; two-thirds (n=12) were very likely to continue inviting parents out of the room during clinic visits. Intervention AYACHC interviewed by providers without a parent present increased from 21% at baseline to 79% after providers participated in IPACT (p<0.001), versus 36% interviewed alone in the control group (p<0.001).

Discussion This is the first multi-level intervention to engage parents and providers as partners in the promotion of autonomy and competence in AYACHC’s self-management. This brief, easily implemented intervention promoted improved skills for all stakeholder groups.

Conclusion Findings set the stage for taking IPACT to scale for all 17-year-olds with chronic illnesses, as a standard component of their clinic visits.