Leveraging Technology to Increase Quality of Life for FASD Across the Lifespan

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Project Summary/Abstract People with fetal alcohol spectrum disorders (FASD) experience barriers to care and a lower quality of life (QOL). Responsive to the Collaborative Initiative on FASD (CIFASD5) objectives of improving interventions and early case identification, this proposal evaluates three developmentally-appropriate and scalable interventions to improve QOL across the lifespan. Each intervention leverages technology to increase accessibility and overcome significant barriers to care. These technological interventions are versatile with good potential for dissemination, offering high potential public health impact. All three interventions are theoretically grounded in self-determination theory (SDT) and are integrated with useful best practices in “FASD-Informed Care,” derived from FASD research, clinical wisdom, and policy. Our methodological approach builds on our success developing mobile health (mHealth) applications within CIFASD4, which has included the Families Moving Forward (FMF) Connect app for caregivers of children ages 3-12 (U01 AA026104) and the My Health Coach app for adults with FASD (UH2 AA02050). Study aims will be accomplished using our established systematic user-centered design approach to mHealth interventions, which emphasizes engagement of key stakeholders throughout the development and testing process. Trial design and outcome measurement are guided by implementation science frameworks with the vision towards optimizing success of future dissemination in community settings. Aim 1 tests whether the “Provider-Assisted FMF Connect” intervention and an Extension of Community Healthcare Outcomes (ECHO) implementation package increases mental health providers’ (n=250) FASD-informed care knowledge, self- efficacy, and practice change (including screening and diagnosis of FASD). We hypothesize mental health providers trained in Provider-Assisted FMF Connect through ECHO tele-mentoring will evidence greater practice change compared to providers in self-directed implementation or waitlist conditions. A larger-scale efficacy trial, Aim 2 will test whether the My Health Coach app improves SDT and QOL outcomes for adults with FASD (n=120). Patterns of app usage relating to outcomes will guide further app refinements and dissemination. Leveraging advisory board and focus group input, Aim 3 will develop and assess usability of a caregiver-assisted mHealth app for adolescents called the “Determined” app system. The Determined app system will include both adolescent and caregiver apps, with synchronized features supporting adolescent self-determination skill building, caregiver autonomy-supportive parenting, and family QOL. Inclusion of these three aims across the lifespan facilitates efficient and mutually informative intervention development. It also addresses gaps in intervention research, especially in adolescence and adulthood. All three aims draw from diverse geographic regions, benefitting directly from recruitment via other CIFASD sites yet expanding beyond them. To other CIFASD5 projects and investigators, we provide much needed, scalable interventions to offer their participants and a clinical setting to test new diagnostic innovations. From findings of our CIFASD colleagues, we will glean content vital to improve our interventions.