March 3, 2026Open Access

What Matters Most? Developing a Core Patient Reported Outcome Set for Individuals With Genetic Intellectual Disabilities: An International Delphi Study

Key Points

The study identifies essential patient reported outcomes, forming a vital framework for individuals with genetic intellectual disabilities.
Key components include a generic core patient reported outcome set designed for the entire genetic intellectual disability population.
The analysis involved a Delphi study, ensuring a thorough, consensus-driven approach to identifying what matters most to patients.
This framework supports effective care and future research efforts, highlighting the need for validated outcome measures in practice.

Abstract

This study identified the most relevant PROs for GID, marking the final step in developing a generic core PRO set for the whole GID population. This GID core PRO set provides a framework to guide care, research and policymaking. The next step involves selecting and validating corresponding patient reported outcome measures (PROMs) to adequately measure these PROs: the GID core PROM set.

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Authors

Nadia Y. van Silfhout

Maud M. van Muilekom

Leonie A. Menke

Journals

Journal of Intellectual Disability Research

Actions

Institutions

University of Amsterdam

Emma Kinderziekenhuis

Child Development Center

References and Citations

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What Matters Most? Developing a Core Patient Reported Outcome Set for Individuals With Genetic Intellectual Disabilities: An International Delphi Study

Key Points

Abstract

Citation Network

Connected Papers

Discussion

Authors

Journals

Actions

Institutions

References and Citations

Citation Network

Connected Papers

Discussion

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