Engaging Adults with Intellectual and other Developmental Disabilities (IDD) to Inform a Patient-Centered Home Time Outcome

Key Research Priorities Identified Through Engaging Adults with IDD, Family Caregivers, and Other IDD Experts:

• To improve health for adults with IDD, research must engage people with lived experience, co-create patient-centered outcome measures, and focus on health priorities that matter most to the IDD community, particularly in the context of aging.
• To better meet the needs for adults with IDD, patient-centered comparative clinical effectiveness research is needed to evaluate health care strategies intended to support people with IDD and their caregivers as they age.
• To tailor the Home Time measure to capture the experiences of the IDD community, research is needed to better understand how the concept of home and time at home and in the community aligns with patient-centered priorities