September 22, 2023

New Report Provides Overview of Patient-Centered Outcomes Research (PCOR) Measures for Adults with Disabilities

A new report written for the Office of the Assistant Secretary for Planning and Evaluation (ASPE) at the U.S. Department of Health and Human Services provides a thorough overview of the current patient-centered outcomes research (PCOR) measures for adults (18-64 years old) with disabilities. Using currently available measures, the report identified six major areas of outcomes research and discussed the gaps that currently exist. Finally, the authors discussed the importance of federal interagency collaboration as a way to increase the quality of data collected across the lifespan of adults with disabilities.

Report Summary

"Assessing Outcomes Relevant for Patient-Centered Outcomes Research Among Adults Aged 18–64 with Disabilities and Federal Data Infrastructure Opportunities (PDF)" was published in August 2023 by NORC at the University of Chicago.

The work described in this report expanded upon information presented in previous ASPE reports. These reports examined the availability of federal data as well as the data infrastructure systems then in place for PCOR. However, previous reports tended to focus on measures for individuals with intellectual and developmental disabilities (ID/DD). The literature review conducted for this report included measures appropriate for many types of disability. The team then categorized their final list of measures into six main “domain areas”:

  1. Social and Community Engagement
  2. Choice and Control
  3. Privacy, Rights, and Human Security
  4. Employment and Self-Sufficiency
  5. Health-Related Social Needs
  6. Health and Wellbeing

The report went on to discuss gaps and concerns in currently available outcome measures. These included: a limited number of measures, questions regarding the reliability and validity of the measures, a lack of consideration of personal preferences, and omission of variables and outcomes meaningful to individuals with disabilities.

Finally, the team put forward two major data infrastructure strategies "to improve the development and use of standardized outcome measures for adults with disabilities..." These strategies are:

  1. Development and use of data standards to facilitate measure standardization and harmonization across data sources
  2. Improvement of data collection systems and linkages to produce more comprehensive outcomes data that can support rigorous PCOR for adults with disabilities

Report Download

PDF iconPCOR Project Report.pdf


Srinivasan, M., Jiménez, F., Shah, A., Kane, R., Karimi, M., and Dullabh, P. (2023, August 14). Assessing outcomes relevant for patient-centered outcomes research among adults aged 18–64 with disabilities and federal data infrastructure opportunities. Office of the Assistant Secretary for Planning and Evaluation, U.S. Department of Health and Human Services.