Facilitating Patient Reported Outcome Measurement for Key Conditions [Methods Study], United States, 2013-2018 (ICPSR 39480)

Version Date: Sep 2, 2025

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Principal Investigator(s):
Elliott S. Fisher, Dartmouth College

https://doi.org/10.3886/ICPSR39480.v1

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Summary

Patient-reported outcome measures are surveys that ask patients about their health or well-being. These surveys may include questions about sleep, depression, or pain. Many of the surveys now in use don't focus on a specific health problem.

The research team wanted to create and test a process for adapting patient-reported outcome measures for specific health problems. To test this process, the team developed surveys for two health problems, one for heart failure and one for knee arthritis.

Citation

Fisher, Elliott S. Facilitating Patient Reported Outcome Measurement for Key Conditions [Methods Study], United States, 2013-2018. Inter-university Consortium for Political and Social Research [distributor], 2025-09-02. https://doi.org/10.3886/ICPSR39480.v1

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Funding

Patient-Centered Outcomes Research Institute (PCORI) (ME-1303-5928)

Subject Terms

Geographic Coverage

Distributor(s)

Inter-university Consortium for Political and Social Research
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Time Period(s)

2013 -- 2018
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Study Purpose

To incorporate condition-specific concerns into generic patient-reported outcome measures. The study objectives were the following:

  • Objective 1: Obtain patient and clinician expert input on the condition-specific relevance of existing and new items to develop improved brief assessments (PROMIS-PLUS) of these 2 high-impact conditions.
  • Objective 2: Validate PROMIS-PLUS in these 2 conditions to document key measurement properties of reliability, validity, patient-perceived relevance, and clinical usability.
  • Objective 3: Produce crosswalks from PROMIS to PROMIS-PLUS and selected legacy instruments for these 2 conditions and disseminate the new instruments and crosswalks.

    • Study Design

    Researchers developed two disease-specific surveys, one for heart failure and the other for knee osteoarthritis, using Patient-Reported Outcomes Measurement Information System (PROMIS) methods and recommendations from the International Society for Pharmacoeconomics and Outcomes Research's Task Force. First, researchers conducted focus groups with 61 patients with heart failure and 68 patients with knee osteoarthritis to identify their priority outcome domains. Next, researchers drafted new survey items to address gaps between the priority domains and domains in existing PROMIS item banks. Researchers refined the new items based on the results of cognitive interviews with 10 patients with each condition and added the items to the generic measures.

    Researchers field-tested the new measures to evaluate reliability, validity, and sensitivity to change. To assess reliability and validity, the sample included 600 patients per condition from an online panel. The average ages of heart failure and knee osteoarthritis patients were 54 and 52, respectively. Among heart failure patients, 45% were female, 67% were white, 19% were African American, and 14% were other races. Among knee osteoarthritis patients, 60% were female, 70% were white, 18% were African American, and 12% were other races. Three to seven days after the initial surveys, researchers asked 100 patients per condition in this sample to retake the surveys to evaluate test-retest reliability.

    To assess sensitivity to change, the sample included 311 patients with knee osteoarthritis and 186 patients with heart failure from nine clinics. The average ages of heart failure and knee osteoarthritis patients were 56 and 65, respectively. Among heart failure patients, 42% were female, 55% were white, 39% were African American, and 6% were other races. Among knee osteoarthritis patients, 68% were female, 87% were white, 8% were African American, and 5% were other races. Patients in this sample completed a follow-up survey three months after baseline.

    Patient advisors and clinicians who had experience with these conditions provided input throughout the study.

    Data Source

    Patient advisors and expert panel, 61 focus group participants with heart failure, 68 focus group participants with knee osteoarthritis, 10 cognitive interview participants with heart failure, 10 cognitive interview participants with knee osteoarthritis, 786 field-test survey respondents with heart failure, 911 field-test survey respondents with knee osteoarthritis

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    Original Release Date

    2025-09-02

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    Notes

    • The public-use data files in this collection are available for access by the general public. Access does not require affiliation with an ICPSR member institution.

    • ICPSR usually offers files in multiple formats for researchers to be able to access data and documentation in formats that work well within their needs. If you have questions about the accessibility of materials distributed by ICPSR or require further assistance, please visit ICPSR’s Accessibility Center.

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    This study is maintained and distributed by the Patient-Centered Outcomes Data Repository (PCODR). PCODR is the official data repository of the Patient-Centered Outcomes Research Initiative (PCORI).