Development and Testing of a Health-Related Independence Measure for Young Adults with Autism Spectrum Disorder

Background:  Health care transition (HCT) services assist youth in the transition from pediatric to adult care, promote health insurance retention, and encourage independence. The provision of HCT services is important to all youth but imperative for those with special health care needs such as Autism Spectrum Disorder. Unfortunately, less than a quarter of the 500,000 young adults with Autism Spectrum Disorder (YA-ASD) receive HCT services. Further, no measure of independence related to health care activities (health-related independence) exists for YA-ASD.

Objectives:  This study created a Health-Related Independence (HRI) measure to evaluate YA-ASD's independence related to their health care needs and to promote successful transition to adult care.

Methods: A collaborative team of YA-ASD, caregivers, health care providers, and ASD-experts used a multi-stage, iterative process to develop the HRI measure. The first phase included focus groups with caregivers (7 groups with 39 total participants) and individual interviews with YA-ASD (27 participants 16-25 years old) to discuss transition needs and identify important HRI topics. Qualitative thematic analysis was used to identify 14 HRI themes (e.g. knowledge of condition, medication management, caregiver stress, safety, and sexuality).

Within phase two, the collaborative team ranked themes according to importance and frequency that young adults encounter these issues, outlined sub-themes, and created questions addressing each theme and subtheme. Exact language YA-ASD and caregivers used in the phase one interviews and focus groups and items from previously validated measures were used when possible. Two center wide meetings, at a local Autism diagnostic and treatment facility, were scheduled with clinicians, staff, and caregivers (n=30) to review, discuss, and develop specific questions and response options.

The third phase of this study involved cognitive interviewing and pretesting to evaluate specific questions, response options, and survey formatting. Fifteen caregivers participated in cognitive interviews examining 25 questions within the measure that the collaborative team considered to be especially complex. The final measure was pretested by twenty-one caregivers using a secure web-based survey tool, REDCap. Revisions to questions and measures were made iteratively based on participant data and team feedback.

Results:  The final HRI measure includes 8 themes (60 items): Knowledge of medical/mental health conditions; Self-care; Medication management; Health care visits; Safety; Sexual health; Health care financing; and Goal planning. Initial qualitative data identified new HRI topics important to YA-ASD and caregivers. Cognitive interviews and pretesting identified problems with language, resulting in better item comprehension and improved response options.

Conclusions:  The HRI measure is a self-administered measure of health care transition and level of independence of a unique and under-represented population- YA-ASD. This measure identifies their specific transition needs and will assist in developing tailored-interventions. The HRI measure will be full-scale tested at five ASD-specific clinics across the national in 2016-2017.