Development and Evaluation of a Patient-Centered Approach to Assess Quality of Care: Patient-Reported Outcomes-Based Performance Measures (PRO-PMs) [Methods Study], 6 U.S. States, 2016-2020 (ICPSR 39628)

Version Date: Dec 11, 2025

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Principal Investigator(s):
Ethan Basch, University of North Carolina at Chapel Hill

https://doi.org/10.3886/ICPSR39628.v1

Version V1

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Summary

Patient-reported outcome measures, or PROMs, ask patients how they feel and what activities they can do in daily life. Patients receiving cancer treatment, such as chemotherapy, often have side effects. PROMs can help cancer centers know if patients are getting high-quality care that helps manage their side effects.

In this study, the research team wanted to

  • Learn from patients and clinicians, like doctors and nurses, what side effects are important to track during chemotherapy
  • Create PROMs that can measure important side effects of chemotherapy

The research team also wanted to test the PROMs to see

  • If patients find them easy to complete
  • If the PROMs can detect differences in how well cancer centers control patients' treatment side effects

Citation

Basch, Ethan. Development and Evaluation of a Patient-Centered Approach to Assess Quality of Care: Patient-Reported Outcomes-Based Performance Measures (PRO-PMs) [Methods Study], 6 U.S. States, 2016-2020. Inter-university Consortium for Political and Social Research [distributor], 2025-12-11. https://doi.org/10.3886/ICPSR39628.v1

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Funding

Patient-Centered Outcomes Research Institute (PCORI) (ME-1507-32079)

Subject Terms

Geographic Coverage

Distributor(s)

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

2016 -- 2020
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Study Purpose

To develop and test the feasibility, acceptability, practice-level differences, and risk adjustment of PROMs that capture patient-reported levels of chemotherapy side effects

Study Design

Researchers first interviewed 124 patients, caregivers, clinicians, and healthcare administrators at six cancer centers in California, Connecticut, Florida, Minnesota, North Carolina, and Texas to identify side effects of chemotherapy that are important to patients. Side effects including pain, fatigue, and nausea and vomiting were of greatest concern.

Researchers next reviewed the literature to identify existing PROMs that assess the side effects found in the interviews. Using these PROMs, researchers developed 12 single-item PROMs to track patient-reported levels of side effects from chemotherapy treatment, like pain, neuropathy, diarrhea, fatigue, anxiety, and others. Researchers also created summary measures made up of multiple single-item measures.

Finally, the research team fielded a survey with the new PROMs. A total of 607 patients receiving care from the six cancer centers completed the survey, which also included questions about ease of completion and understanding of PROMs. Patients completed the survey at home, online, or by phone, between 5 and 15 days after the start of chemotherapy.

Of the surveyed patients, 73% were White, 14% were African American, 8% were Asian, and 5% were another race; 11% were Hispanic. Also, 62% of patients were under age 65, and 51% were female.

Patients, clinicians, and PROM researchers helped design the study and analyze results.

In responding to the survey

  • Ninety-six percent of patients reported that the PROMs were easy to complete
  • Ninety-seven percent reported that the PROMs were easy to understand
  • Seventy-two percent completed the survey without a reminder call, and an additional 14% completed the survey after a reminder call

The PROMs were able to differentiate cancer center performance; one cancer center performed better than others in managing patient symptoms based on the 12 measures, and one performed worse. None of the PROMs showed acceptable reliability or validity, which could be due to the low number of patients in the study. Risk adjustment had a modest impact on cancer center performance

Universe

Patients receiving chemotherapy at cancer centers in six states.

Data Source

607 patients receiving chemotherapy at cancer centers in California, Connecticut, Florida, Minnesota, North Carolina, and Texas

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Original Release Date

2025-12-11

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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).