Adults with fetal alcohol spectrum disorders (FASD) experience many barriers to care. Research on the effects of prenatal alcohol exposure during adulthood is limited and few providers have the knowledge and skills to effectively serve this population. Adults with FASD need reliable and accessible information to inform decision making about their health and well-being. Innovative and scalable solutions are needed. The proposed project aims to meet this need by developing a novel mobile health (mHealth) application (?app?), currently called ?My Health Coach,? to directly provide adults with FASD evidence-based education about their condition and tools to promote their own self-management and health advocacy goals. We will build on our success with the Families Moving Forward (FMF) Connect mHealth app for caregivers of younger children with FASD. This will allow us to extend into adulthood and expedite our ability to innovate adaptations tailored for this population. This project will follow a systematic approach to the development and evaluation of the My Health Coach app. We will engage an advisory board of adult leaders with FASD and seek input from key stakeholders at each step of the development and testing process. We will utilize focus group and survey methodologies to solicit input from diverse adults to inform development of the My Health Coach app (Aim 1). We will then conduct a feasibility trial (n=40;
Aim 2), including both qualitative and quantitative methodologies to assess the feasibility and user satisfaction and experiences with the app. The results will inform further refinements of the app and estimate effect sizes for future larger-scale trials. Implementation data will also aid in identifying the patterns of app usage that relate to the greatest improvements in outcomes. Study hypotheses include: (1) adults with FASD will appreciate the simple and engaging design of the app, its ability to organize and remind them of information, and its delivery of useful content when they need it; (2) participants will vary in their perceived motivators and barriers for app use; and (3) improvements in pre-post outcomes will be associated with a usage pattern reflecting more routine app usage and a higher frequency of user interactions with the app. Results of this study will further the overall strategic aims of the Collaborative Initiative on FASD (CIFASD), which are to inform and develop effective interventions for FASD. This project integrates two main themes of CIFASD-4, specifically (1) adult health, and (2) using technology to increase access to care. The project will also benefit from resources and collaborations within CIFASD to carry out the proposed work, including integrating findings from other projects into inform intervention content, recruitment of a diverse sample, and outreach and dissemination. This will be the first study to systematically develop and test an intervention for adults with FASD targeting health and well-being. It has the advantage of being scalable and could reduce significant barriers to care, resulting in a greater public health impact.

Public Health Relevance

Adults with fetal alcohol spectrum disorders (FASD) experience many barriers to care and have difficulty accessing reliable information about their condition. This project will develop and evaluate the efficacy of a mobile health application to support their health and well-being.

Agency
National Institute of Health (NIH)
Institute
National Institute on Alcohol Abuse and Alcoholism (NIAAA)
Type
Exploratory/Developmental Cooperative Agreement Phase I (UH2)
Project #
1UH2AA029050-01
Application #
10167433
Study Section
Special Emphasis Panel (ZAA1)
Program Officer
Wang, Joe
Project Start
2021-02-01
Project End
2023-01-31
Budget Start
2021-02-01
Budget End
2022-01-31
Support Year
1
Fiscal Year
2021
Total Cost
Indirect Cost
Name
University of Rochester
Department
Pediatrics
Type
School of Medicine & Dentistry
DUNS #
041294109
City
Rochester
State
NY
Country
United States
Zip Code
14627