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The FASDcare study sheds light on a hidden disability:
A focus on the impact of the 2020 Irish Research Council New Foundations Awards

Dr Katy Tobin was awarded a New Foundations grant from the Irish Research Council (IRC) in 2020. This week we caught up with Dr Tobin to talk about the impact of her research, and how the coveted IRC award has shaped her work.

Dr Tobin is an Assistant Professor in Biostatistics, based in the Global Brain Health Institute and Public Health & Primary Care in Trinity’s School of Medicine, and is principal investigator on the FASDcare Study. This study focuses on Foetal Alcohol Spectrum Disorder (FASD), which is a range of conditions that occur following exposure to alcohol before birth. Prenatal alcohol exposure is the most common preventable cause of intellectual disability. It is estimated that 1 in 20 people in Ireland live with this condition, and that 600 babies with FASD are born here each year (although this is thought to be a conservative estimate). The predicted prevalence of FASD in Ireland is 4.75%, the third highest in the world. However, most individuals with FASD are undiagnosed or misdiagnosed, resulting in inappropriate care and potentially preventable secondary effects including mental health difficulties, substance misuse, and imprisonment. Those with FASD may experience cognitive, behavioural, emotional, physical, and developmental deficits, with lifelong implications and high costs to society. Dr Tobin explains the difficulties around diagnosis and management:

At birth, an individual with Foetal Alcohol Syndrome (FAS, which is one type of FASD) has a life expectancy of just 34 years. Ireland does not have published clinical guidelines on the diagnosis and management of FASD. There is an urgent need to address the major gap in the availability of support services to meet the complex needs of people living with FASD in Ireland, including educational, social and medical services.”

As part of the FASDcare study, the parents and/or caregivers of children and young people with FASD living on the island of Ireland were invited to share their experiences in an anonymous online survey (this survey was completed last month). Dr Tobin works with Trinity Research Fellow Dr Elizabeth McCarthy and they are preparing to analyse the data obtained. The survey gathered both quantitative and qualitative data on many aspects of caring for someone with FASD. The study will examine the core difficulties experienced by caregivers and/or people with FASD, the pathway to diagnosis, the supports required and how much of their needs are currently met. The team will also examine out-of-pocket spending related to FASD with support from our colleague Dr Bridget Johnston in Trinity’s Centre for Health Policy and Management. This project has facilitated the development of a collaborative professional network in Ireland with shared goals of FASD prevention and improving support for those who are affected, as Dr Tobin explains:

We are collaborating with Alcohol Forum Ireland, a national charity who provide support and services to individuals and families impacted by alcohol harm. They advocate for an improvement in supports for people with FASD, and their families, and the adoption of clear clinical guidelines for diagnosis. National FASD charity ENDpae are our PPI [patient and public involvement] partner on the study. Our collaborators, including the HSE advisory panel for FASD, provided expert guidance on the development of the survey and promoted the study in their networks to ensure that we reached as many potential participants as possible. We are thankful for the support/guidance of Dr Alan Price in Liverpool John Moores University, FASD Ireland and the many others who helped to make the study such a success. In particular, we are thankful to all of the study participants for their time in completing the survey. We hope the study findings will be used to enhance the brilliant work of our collaborators. We are delighted to have secured a New Foundations grant from the IRC to carry out this study.”

The group aim to extend these collaborative efforts and build on the study findings regarding the experiences of caregivers of people with FASD in Ireland. Dr Tobin and her team hope that the findings will promote equitable access to healthcare services for those living with FASD and their families, as well as increasing public awareness of the adverse effects of alcohol use in pregnancy on brain development. Ultimately, the study will identify key areas for service development to support people with FASD and their families.

For more information on FASD, visit the website of ENDpae https://endpae.ie/