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Communicating patient-reported outcome scores using graphic formats: results from a mixed-methods evaluation

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Abstract

Background

Patient-reported outcomes (PROs) promote patient-centered care by using PRO research results (“group-level data”) to inform decision making and by monitoring individual patient’s PROs (“individual-level data”) to inform care. We investigated the interpretability of current PRO data presentation formats.

Method

This cross-sectional mixed-methods study randomized purposively sampled cancer patients and clinicians to evaluate six group-data or four individual-data formats. A self-directed exercise assessed participants’ interpretation accuracy and ratings of ease-of-understanding and usefulness (0 = least to 10 = most) of each format. Semi-structured qualitative interviews explored helpful and confusing format attributes.

Results

We reached thematic saturation with 50 patients (44 % < college graduate) and 20 clinicians. For group-level data, patients rated simple line graphs highest for ease-of-understanding and usefulness (median 8.0; 33 % selected for easiest to understand/most useful) and clinicians rated simple line graphs highest for ease-of-understanding and usefulness (median 9.0, 8.5) but most often selected line graphs with confidence limits or norms (30 % for each format for easiest to understand/most useful). Qualitative results support that clinicians value confidence intervals, norms, and p values, but patients find them confusing. For individual-level data, both patients and clinicians rated line graphs highest for ease-of-understanding (median 8.0 patients, 8.5 clinicians) and usefulness (median 8.0, 9.0) and selected them as easiest to understand (50, 70 %) and most useful (62, 80 %). The qualitative interviews supported highlighting scores requiring clinical attention and providing reference values.

Conclusions

This study has identified preferences and opportunities for improving on current formats for PRO presentation and will inform development of best practices for PRO presentation. Both patients and clinicians prefer line graphs across group-level data and individual-level data formats, but clinicians prefer greater detail (e.g., statistical details) for group-level data.

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Acknowledgments

This analysis was (partially) 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 Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors or Methodology Committee. Drs. Snyder and Smith are members of the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins (NCI P30 CA 006973). The funding sources had no role in 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); Bryce B. Reeve, PhD (University of North Carolina at Chapel Hill and Lineberger Comprehensive Cancer Center); Marc Silver (author of Breast Cancer Husband—How to Help Your Wife (and Yourself) Through Diagnosis, Treatment, and Beyond); Eden Stotsky-Himelfarb (Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins); Ellen Stovall (National Coalition for Cancer Survivorship); 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); 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.

Conflict of interest

The authors report no conflict of interest.

Author information

Authors and Affiliations

  1. Queen’s Cancer Research Institute, Queen’s University, 10 Stuart St, Level 2, Kingston, ON, K7L 3N6, Canada

    Michael D. Brundage

  2. Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, 1650 Orleans St, Baltimore, MD, 21287, USA

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

  3. Johns Hopkins Bloomberg School of Public Health, 624 N. Broadway, Baltimore, MD, 21205, USA

    Katherine C. Smith & Claire F. Snyder

  4. Division of General Internal Medicine, Johns Hopkins School of Medicine, 624 N. Broadway, Baltimore, MD, 21205, USA

    Emily A. Little & Claire F. Snyder

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  1. Michael D. Brundage
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  2. Katherine C. Smith
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  4. Elissa T. Bantug
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  5. Claire F. Snyder
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The PRO Data Presentation Stakeholder Advisory Board

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Correspondence to Michael D. Brundage.

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Brundage, M.D., Smith, K.C., Little, E.A. et al. Communicating patient-reported outcome scores using graphic formats: results from a mixed-methods evaluation. Qual Life Res 24, 2457–2472 (2015). https://doi.org/10.1007/s11136-015-0974-y

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