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Engaging stakeholders to improve presentation of patient-reported outcomes data in clinical practice

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Supportive Care in Cancer Aims and scope Submit manuscript

Abstract

Purpose

Patient-reported outcomes (PROs) can promote patient-centered care, but previous research has documented interpretation challenges among clinicians and patients. We engaged stakeholders to improve formats for presenting individual-level PRO data (for patient monitoring) and group-level PRO data (for reporting comparative clinical studies).

Methods

In an iterative process, investigators partnered with stakeholder workgroups of clinicians and patients to address previously identified interpretation challenges. Candidate approaches were then tested in semi-structured, one-on-one interviews with cancer patients and clinicians. Interpretation issues addressed included conveying score meaning (i.e., what is good/bad) and directional inconsistency (whether higher scores are better/worse). An additional issue for individual-level PROs was highlighting potentially concerning scores and, for group-level PROs, identifying important between-group differences (clinical, statistical).

Results

One-on-one interviews in a purposive sample of clinicians (n = 40) and patients (n = 39) provided insights regarding approaches to address issues identified. For example, adding descriptive labels to the Y-axis (none, mild, moderate, severe) helps address directional inconsistency and aids interpretation of score meaning. Red circles around concerning data points or a threshold line indicating worse-than-normal scores indicate possibly concerning scores for individual-level PRO data. For group-level PRO data, patients and some clinicians are confused by confidence limits and clinical versus statistical significance, but almost all clinicians want p values displayed.

Conclusions

Variations in interpretation accuracy demonstrate the importance of presenting PRO data in ways that promote understanding and use. In an iterative stakeholder-driven process, we developed improved PRO data presentation formats, which will be evaluated in further research across a large population of patients and clinicians.

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Acknowledgments

This analysis was supported by a Patient-Centered Outcomes Research Institute (PCORI) Award (R-1410-24904). 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 and its Board of Governors or Methodology Committee. Dr. Smith and Dr. Snyder are members of the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins (P30 CA 006973). The funding sources had no role in the study design, data collection, analysis, interpretation, writing, or decision to submit the manuscript for publication. The PRO Data Presentation Stakeholder Advisory Board includes Neil K. Aaronson, PhD (Netherlands Cancer Institute); Patricia A. Ganz, MD (University of California-Los Angeles and Jonsson Comprehensive Cancer Center); Ravin Garg, MD (Anne Arundel Medical Center); Michael Fisch, MD (M.D. Anderson Cancer Center); Vanessa Hoffman, MPH (Bladder Cancer Advocacy Network); Bryce B. Reeve, PhD (University of North Carolina at Chapel Hill and Lineberger Comprehensive Cancer Center); Eden Stotsky-Himelfarb (Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins); Ellen Stovall (National Coalition for Cancer Survivorship); and Matthew Zachary (Stupid Cancer). The Johns Hopkins Clinical Research Network (JHCRN) site investigators and staff include Ravin Garg, MD, and Steven P. DeMartino, CCRC, CRT, RPFT (Anne Arundel Medical Center); Melissa Gerstenhaber, MAS, MSN, RN, CCRN (JHCRN/Anne Arundel Medical Center); Gary Cohen, MD, and Cynthia MacInnis, BS, CCRP (Greater Baltimore Medical Center); James Zabora, ScD, MSW (Inova Health System), and Sandra Schaefer, BSN, RN, OCN (JHCRN/Inova Health System); Paul Zorsky, MD, Lynne Armiger, MSN, CRNP, ANP-C, Sandra L. Heineken, BS, RN, OCN, and Nancy J. Mayonado, MS (Peninsula Regional Medical Center); Michael Carducci, MD (Johns Hopkins Sibley Memorial Hospital); and Carolyn Hendricks, MD, Melissa Hyman, RN, BSN, OCN, and Barbara Squiller, MSN, MPH, CRNP (Suburban Hospital). Finally, we are most grateful to the patients and clinicians who participated in this study. In particular, we extend our gratitude to the patients from part I of the study who agreed to contribute to the workgroups as research partners (rather than participants) for this phase of the research.

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Authors and Affiliations

  1. Department of Health, Behavior and Society, Johns Hopkins Bloomberg School of Public Health, 624 N. Broadway, Rm 726, Baltimore, MD, USA

    Katherine C. Smith

  2. Queen’s Cancer Research Institute, Queen’s University, Kingston, ON, Canada

    Michael D. Brundage

  3. Division of General Internal Medicine, Johns Hopkins School of Medicine, Baltimore, MD, USA

    Elliott Tolbert, Emily A. Little & Claire F. Snyder

  4. Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, Baltimore, MD, USA

    Katherine C. Smith, Elissa T. Bantug & Claire F. Snyder

Authors
  1. Katherine C. Smith
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  2. Michael D. Brundage
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  3. Elliott Tolbert
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  4. Emily A. Little
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  5. Elissa T. Bantug
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  6. Claire F. Snyder
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Consortia

PRO Data Presentation Stakeholder Advisory Board

Corresponding author

Correspondence to Katherine C. Smith.

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The Johns Hopkins School of Medicine Institutional Review Board approved the study. All participants provided signed consent.

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Smith, K.C., Brundage, M.D., Tolbert, E. et al. Engaging stakeholders to improve presentation of patient-reported outcomes data in clinical practice. Support Care Cancer 24, 4149–4157 (2016). https://doi.org/10.1007/s00520-016-3240-0

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  • DOI: https://doi.org/10.1007/s00520-016-3240-0

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