Common patient-reported outcomes across ICHOM Standard Sets: the potential contribution of PROMIS®

Caroline B. Terwee*, Marloes Zuidgeest, Harald E. Vonkeman, David Cella, Lotte Haverman, Leo D. Roorda

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

24 Scopus citations


Background: The International Consortium for Health Outcomes Measurement (ICHOM) develops condition-specific Standard Sets of outcomes to be measured in clinical practice for value-based healthcare evaluation. Standard Sets are developed by different working groups, which is inefficient and may lead to inconsistencies in selected PROs and PROMs. We aimed to identify common PROs across ICHOM Standard Sets and examined to what extend these PROs can be measured with a generic set of PROMs: the Patient-Reported Outcomes Measurement Information System (PROMIS®). Methods: We extracted all PROs and recommended PROMs from 39 ICHOM Standard Sets. Similar PROs were categorized into unique PRO concepts. We examined which of these PRO concepts can be measured with PROMIS. Results: A total of 307 PROs were identified in 39 ICHOM Standard Sets and 114 unique PROMs are recommended for measuring these PROs. The 307 PROs could be categorized into 22 unique PRO concepts. More than half (17/22) of these PRO concepts (covering about 75% of the PROs and 75% of the PROMs) can be measured with a PROMIS measure. Conclusion: Considerable overlap was found in PROs across ICHOM Standard Sets, and large differences in terminology used and PROMs recommended, even for the same PROs. We recommend a more universal and standardized approach to the selection of PROs and PROMs. Such an approach, focusing on a set of core PROs for all patients, measured with a system like PROMIS, may provide more opportunities for patient-centered care and facilitate the uptake of Standard Sets in clinical practice.

Original languageEnglish (US)
Article number259
JournalBMC Medical Informatics and Decision Making
Issue number1
StatePublished - Dec 2021


  • Healthcare evaluation
  • Outcome measurement
  • Patient-reported outcomes

ASJC Scopus subject areas

  • Health Policy
  • Health Informatics
  • Computer Science Applications


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