Work

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

Year: 2026

Type: article

Abstract: 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.

Source: Journal of Mental Health Research in Intellectual Disabilities

DOI: 10.1080/19315864.2026.2709341

Authors: Joan B. Beasley, Jessica Kramer, Luther G. Kalb, Ann E. Klein

Institutions: University of New Hampshire, University of Florida, Kennedy Krieger Institute, Johns Hopkins University

Language: English

Topic: Down syndrome and intellectual disability research

Subfield: Public Health, Environmental and Occupational Health

Field: Medicine

Domain: Health Sciences

SDG: Good health and well-being

Open Access status: hybrid

Funder: Patient-Centered Outcomes Research Institute