Fetal alcohol spectrum disorders (FASD) are a group of conditions that can occur when a baby is exposed to alcohol before birth. While completely preventable, these conditions can cause lifelong problems. There is no safe amount or time of pregnancy to drink alcohol, so the best prevention is for anyone who is considering becoming pregnant or thinks they might be pregnant to refrain from drinking alcohol. Although there are point-in-time estimates of the prevalence of FASDs, there are not systematic, ongoing estimates of children living with a FASD. Public health surveillance of children with FASDs is challenging in several ways, such as difficulty obtaining information on prenatal alcohol exposure (PAE), inconsistent documentation of PAE in healthcare records, lack of an agreed upon set of diagnostic criteria, and high rates of missed diagnoses or misdiagnoses. FASD service providers, advocates, and public health leadership in Minnesota are all interested in moving towards a systematic way of conducting surveillance of children with a FASD.
This funding opportunity would facilitate a strong partnership between the Minnesota Department of Health (MDH) and Proof Alliance, a nonprofit organization focused on preventing FASD and providing identification, intervention, and support for people living with an FASD, which make up the FASD Surveillance Team for this project. The team will engage an Advisory Group of clinicians from the FASD Diagnostic Consortium in Minnesota, other data partners, and stakeholders including families/caregivers of individuals with a FASD. This partnership brings together extensive experience in evaluating and diagnosing FASD, providing care and treatment services, and developing surveillance systems. The FASD surveillance team is eager to work with CDC and other funded recipients to explore the feasibility of using healthcare data and other administrative data as data sources for public health surveillance of children with FASD. Working with the Advisory Group, the team will identify relevant healthcare and administrative data, and abstract a sample of case records to characterize the information that is available as well as the completeness and quality of the data. In addition, the FASD surveillance team will use qualitative data collection methods to learn from partners throughout Minnesota the processes currently used for the referral, evaluation, and diagnosis of FASDs, and the referral to care and treatment services. The FASD surveillance team will share the results of these quantitative and qualitative data collections with Advisory Group members, as well as CDC and other funded recipients to identify ways to improve those processes and to identify additional potential data sources for surveillance of FASD.
The MDH will measure and meet the short-term outcomes after Year 1, and changes in the intermediate outcomes in Years 2 and 3. Short term outcomes include 1) Increased knowledge of current practices and data sources for identification, evaluation, diagnosis, referral for care and treatment of children with FASDs; and 2) Increased knowledge of challenges and benefits of using clinical and other administrative data for surveillance of children with FASDs. Achieving these outcomes will inform strategies to meet the challenges of building a strong and coherent surveillance system for children with FASDs, improve the ability to recognize and document FASD as a neurodevelopmental condition, and identify disparities and biases in FASD referrals, diagnoses, and treatments.