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Disabilities

Patient-Reported Outcomes for Individuals with Intellectual Disabilities Improve Care and Research

Strategic Insights

— 1 min read

Research from the Amsterdam University Medical Center has identified relevant patient-reported outcomes (PROs) that are essential for improving the quality of care and research impact for individuals with genetic intellectual disabilities (GID). The study emphasized the importance of measuring PROs that represent the patient's perspective on their health and functioning. Currently, various and potentially irrelevant PROs are being measured for individuals with GID, which hinders effective care and research.

Key Takeaways:

  • The study aimed to identify relevant PROs from the perspective of different stakeholders, including individuals with GID, caregivers, healthcare professionals, and European patient representatives.
  • A qualitative study was conducted using focus groups and interviews with a total of 51 participants, including seven adolescents and 10 adults with GID, 12 caregivers, 13 multidisciplinary healthcare professionals, and nine European patient representatives.
  • The study identified PROs related to all health domains, including physical, mental, and social functioning, and highlighted themes related to the negative impact of GID.
  • The research concluded that a meaningful PRO set for GID will inform care, research agendas, policymaking, and the development of a generic patient-reported outcome measure (PROM) set.
  • The study's findings have significant implications for improving the quality of care and research impact for individuals with GID.

Statistics:

  • Ten focus groups and 13 interviews were conducted with a total of 51 participants.
  • The study included 7 adolescents and 10 adults with GID, 12 caregivers, 13 multidisciplinary healthcare professionals, and 9 European patient representatives.
  • The research concluded that a meaningful PRO set for GID will be developed, which will inform care, research agendas, policymaking, and the development of a generic PROM set.

Sources:

  • "Patient reported outcomes that matter to individuals with (genetic) intellectual disabilities: a qualitative study." Journal of Neurodevelopmental Disorders, 2025,17(1):1-13.
  • The publisher for Journal of Neurodevelopmental Disorders is BMC.
  • "New Findings from Amsterdam University Medical Center in the Area of Genetics Published." Life Science Weekly. October 21, 2025; p 2706.

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