Measuring Patient Reported Mental Health Service Experiences of People with Intellectual/Developmental Disabilities

Introduction: Patient reported experience measures (PREMs) are a vital indicator of treatment effectiveness and quality. While many people with intellectual and developmental disabilities (IDD) receive mental health care, knowledge of their experiences is limited. Methods: Data from the Person Experiences Interview Survey PREM for 1,006 people with IDD were analyzed using mixed methods integrated to give depth and breadth to the self-reported mental health service experiences. Results: Findings indicated that less than half reported having all they wanted or needed well short of the 70% standard benchmark for evaluating patient experiences as put forth by the Agency for Healthcare Research and Quality. Notable gaps include treatment options, choice in providers, crisis response, and opportunities for shared decision making. Conclusion: Self-report from people with IDD may help identify ways to improve mental health service experiences and outcomes. Future research should examine longitudinal changes and link PEIS/PREM data with clinical and service outcomes.