“It Changed the Way I Approach Medications”: Acceptability and Feasibility of Curriculum for Transition to Medication Self-Management for Transition-Age Youth (14-25 years) with Autism (ASD)

Shone LP, Silverman L, Welch T, Harris DL, Aldrich J, Hyman SL

Presented at the 2019 Pediatric Academic Societies Annual Meeting.

Background: Up to 42% of children (62% of adults) with ASD use >1 psychotherapeutic medication; adherence is a developmental challenge of adolescence. Little is known about acceptability and feasibility of medication self-management interventions in transition-age youth with ASD.

Objective: In a clinical trial planning grant, test acceptability and feasibility of curriculum for transition to medication self-management for youth with higher-functioning ASD.

Sample: Eligible participants in Rochester NY, ages 14-25, clinical Dx of ASD, cognitive ability to participate in English, and currently prescribed medication for behavioral/emotional symptoms.

Intervention: Participants randomized to receive 10 curriculum modules as either: in-person classes (intervention) or self-study manuals (comparison). Classes met for 10 weeks, 5 weeks, and 3-day intensive. Curriculum developed with parent, patient, clinician, educator, and pharmacist input included safe effective medication use, making MD appointments and talking with doctors, creating a medication plan, and use of the pharmacy.

Measures: Qualitative outcome: a) satisfaction (acceptability). Quantitative outcomes: b) fidelity to curriculum (feasibility) and c) transition readiness. All participants rated satisfaction with the modules and self-rated transition readiness in pre/post in-person interviews. Fidelity checklists were completed by trained observers in intervention group sessions and were self-rated via checklist by control participants.

Analyses: Included fidelity as % of elements covered of total possible, and pre-post frequencies of transition readiness. This pilot trial was not designed for statistical comparisons.

Results: 21 of 29 participants (72% intervention; 73% comparison) completed the trial. Most were White, non-Latino (97%), and male (72%); median age 18.5 years. Intervention participants liked interactive/social aspects of the class; comparison self-study participants liked "small activities” and "how much time I had..." (Table 1). Some measures of transition readiness (Table 2) improved in both groups. Fidelity to curricular elements was 94% (intervention) and 63% (comparison).

Conclusion: Our curriculum for self-management of medications for transition-age individuals with higher-functioning ASD was acceptable, feasible, and delivered with fidelity to the curriculum. Further research to test this intervention in a larger randomized trial is warranted.