Grant: Project Grant

Doctors can now detect fetal brain abnormalities through imaging, but predicting developmental outcomes remains challenging. The most important tool is MRI pictures of the fetuses' brain, which doctors use to predict future development, and the pregnant person uses this information to make time-sensitive and difficult decisions about medical care. It is unknown how well doctors predict different aspects of development, such as walking and talking, or which aspects are most important to parents when they're making medical decisions. Previous studies categorize any disability as a "bad outcome". In this study we will address this gap by collaborating with a diverse group of parents with lived experience, scientists and doctors to co-design the first prediction framework that includes different aspects of development to ensure an anti-ableist perspective. We will then validate this tool using previous fetal cases see if there is agreement between doctors and with true outcomes. Objective: to co-design and validate an anti-ableist fetal neurodevelopment prediction tool We have assembled a diverse team across Alberta, including medical specialists in fetal neurology, genetics, maternal-fetal medicine, radiology, scholars of ethics, epidemiology, disability, and a social worker and patient partners. The team will recruit people with lived experience and determine which outcomes are important to them to create a prediction framework. Next, five fetal neurologists will use this framework on 104 previous cases. At the same time, other team members will review medical charts for actual outcomes. We will test how well the fetal neurologist agree with each other, and how accurate their predictions were to what happened. This study will co-design the first research and clinical tool to ensure doctors are communicating accurate information about family-centered outcomes when parents are faced with a fetal brain problem.