Caregiver Interviews Regarding Health in Down Syndrome

Individuals with Down syndrome (DS) have co‐occurring medical conditions. Research on how caregivers understand, interpret, and answer questions about the health of their son or daughter with DS is needed to guide the development of a measure of the health status of children and adolescents with DS. We conducted 1‐h virtual cognitive interviews of caregivers of individuals aged 0 to 21 with DS about our drafted survey items on physical, mental, and social health using a modified “think‐aloud” approach with probes. In addition to using their feedback to iteratively refine our survey, in this manuscript we describe the themes of feedback from caregivers and summarize survey item changes. Four rounds of cognitive interviews for a total of 40 interviews of 42 caregivers of individuals with DS were completed. Cognitive interview themes included: using the easiest phrase possible, focusing on the present, being conversational in terminology, and specifying who items refer to or who comparison groups are, among others. Caregiver interviews were informative and led us to make modifications to our survey items. Themes emerged which hold use to other researchers conducting surveys in populations with genetic syndromes. Trial Registration: NCT04631237