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

> **NIH NIH U01** · UNIVERSITY OF ROCHESTER · 2022 · $422,708

## Abstract

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 oth...

## Key facts

- **NIH application ID:** 10469138
- **Project number:** 2U01AA026104-06
- **Recipient organization:** UNIVERSITY OF ROCHESTER
- **Principal Investigator:** CHRISTIE Lynn McGee Petrenko
- **Activity code:** U01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2022
- **Award amount:** $422,708
- **Award type:** 2
- **Project period:** 2017-07-01 → 2027-04-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10469138

## Citation

> US National Institutes of Health, RePORTER application 10469138, Leveraging Technology to Increase Quality of Life for FASD Across the Lifespan (2U01AA026104-06). Retrieved via AI Analytics 2026-05-24 from https://api.ai-analytics.org/grant/nih/10469138. Licensed CC0.

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