Methods for Prioritizing Surrogate Desired Health Outcomes for Patients [Methods Study], Washington, DC and Maryland, 2013-2018

Children with intellectual and cognitive disabilities often have problems with reasoning, learning, and problem solving. With such challenges, caregivers may have to make choices for their children about their health care and treatments. These children may need such help into young adulthood.
In this study, the research team wanted to find out what matters most to caregivers about their children's care. Caregivers had children with an intellectual or cognitive disability plus a mental health condition, such as depression or anxiety. The team interviewed caregivers about their preferences. Then the team used this information to design a survey. A larger group of caregivers filled out the survey.