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Using patient-reported outcomes and PROMIS in research and clinical applications: experiences from the PCORI pilot projects

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Abstract

Purpose

The field of patient-centered outcomes research (PCOR) continues to develop. Patient-reported outcomes and, in particular the Patient-Reported Outcomes Measurement Information System (PROMIS) contribute complementary data to clinician-derived outcomes traditionally used in health decision-making. However, there has been little work to understand how PROMIS measures may inform or be integrated into PCOR or clinical applications.

Methods

Lead investigators from four pilot projects funded by the Patient-Centered Outcomes Research Institute (PCORI) collaborated to discuss lessons learned about the use of PROMIS in PCOR studies via virtual and in-person meetings. In addition, a qualitative data collection tool was used to assess the pilot projects’ experiences.

Results

Lessons learned from the pilot projects centered on practical elements of research design, such as choosing the right outcomes to study, considering the advantages and limitations of the PROMIS short forms and computer adaptive technology versions, planning ahead for a feasible data collection process, maintaining the focus on patients by ensuring that the research is truly patient-centered, and helping patients and providers make the most of PROMIS in care.

Conclusion

The PCORI pilot projects demonstrated that PROMIS can be successfully used to conduct research that will help patients make decisions about their care. Interest in PCOR continues to grow and the lessons learned from these projects about the use of PROMIS will be helpful to investigators. Given the numerous benefits of PROMIS, implementing this tool in research and care will hopefully lead to significant progress in measuring health outcomes that are meaningful and relevant to all stakeholders.

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Acknowledgments

This work was supported through Patient Centered Outcomes Research Institute (PCORI) Awards: Contract Numbers IP2-PI000737 (Bingham PI), IP2-PI000603 (Merkel PI), IP2-PI000797 (Mielenz PI), IP2-PI000189 (Pilkonis PI), and 2000-20-10-10 CMO 0001 (AcademyHealth). All statements in this report, including its findings and conclusions, are solely those of the authors and do not necessarily represent the views of the PCORI, its Board of Governors or Methodology Committee. Dr. Bingham's work was also supported by a grant from the National Institutes of Arthritis and Musculoskeletal and Skin Diseases (P30-AR053503). Dr. Merkel’s work on this project was also supported by a grant from the National Institute of Arthritis and Musculoskeletal and Skin Diseases (R01-AR064153). At the time of conceptualization and initial writing of the paper, Ms. Edmundson and Ms. Moore were employees of AcademyHealth.

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Authors and Affiliations

  1. Division of Rheumatology, Johns Hopkins University, 5200 Eastern Avenue, MFL Center Tower Room 404, Baltimore, MD, 21224, USA

    Clifton O. Bingham III

  2. Divisions of Clinical Epidemiology, Rheumatology and Respiratory Epidemiology and Clinical Trials Unit, McGill University/Royal Victoria Hospital, 687 Av des Pins Ouest, Ross Pavillion R4.31, Montreal, QC, H3A 1A1, Canada

    Susan J. Bartlett

  3. Division of Rheumatology and Department of Biostatistics and Clinical Epidemiology, University of Pennsylvania, 3400 Spruce Street, Philadelphia, PA, 19104, USA

    Peter A. Merkel

  4. Department of Epidemiology, Columbia University Mailman School of Public Health, 722 West 168th St., New York, NY, 10032, USA

    Thelma J. Mielenz

  5. Department of Psychiatry, University of Pittsburgh, 3811 O’Hara St., Pittsburgh, PA, 15213, USA

    Paul A. Pilkonis

  6. Swedish Medical Center, 5300 Tallman Ave NW, Seattle, WA, 98107, USA

    Lauren Edmundson

  7. University of Michigan School of Public Health, 1415 Washington Heights, Ann Arbor, MI, 48109-2029, USA

    Emily Moore

  8. AcademyHealth, 1150 17th Street NW, Suite 600, Washington, DC, 20036, USA

    Rajeev K. Sabharwal

Authors
  1. Clifton O. Bingham III
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  2. Susan J. Bartlett
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  3. Peter A. Merkel
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  4. Thelma J. Mielenz
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  5. Paul A. Pilkonis
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  6. Lauren Edmundson
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  7. Emily Moore
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  8. Rajeev K. Sabharwal
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Corresponding author

Correspondence to Clifton O. Bingham III.

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Bingham, C.O., Bartlett, S.J., Merkel, P.A. et al. Using patient-reported outcomes and PROMIS in research and clinical applications: experiences from the PCORI pilot projects. Qual Life Res 25, 2109–2116 (2016). https://doi.org/10.1007/s11136-016-1246-1

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  • DOI: https://doi.org/10.1007/s11136-016-1246-1

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