Making a picture worth a thousand numbers: recommendations for graphically displaying patient-reported outcomes data
Open accessAbstract
Purpose Patient-reported outcomes (PROs) can promote patient-centered care in multiple ways: (1) using an individual patient's PRO data to inform his/her management, (2) providing PRO results from comparative research studies in patient educational materials/decision aids, and (3) reporting PRO results from comparative research studies in peer-reviewed publications. Patients and clinicians endorse the value of PRO data; however, variations in how PRO measures are scored and scaled, and in how the data are reported, make interpretation challenging and limit their use in clinical practice. We conducted a modified Delphi process to develop stakeholder-engaged, evidence-based recommendations for PRO data display for the three above applications to promote understanding and use. Methods The Consensus Panel included cancer survivors/caregivers, oncologists, PRO researchers, and application-specific end-users (e.g., electronic health record vendors, decision aid developers, journal editors). We reviewed the data display issues and their evidence base during pre-meeting webinars. We then surveyed participants' initial perspectives, which informed discussions during an in-person meeting to develop consensus statements. These statements were ratified via a post-meeting survey. Results Issues addressed by consensus statements relevant to both individual and research data applications were directionality (whether higher scores are better/worse) and conveying score meaning (e.g., none/mild/moderate/severe). Issues specific to individual patient data presentation included representation (bar charts vs. line graphs) and highlighting possibly concerning scores (absolute and change). Issues specific to research study results presentation included handling normed data, conveying statistically significant differences, illustrating clinically important differences, and displaying proportions improved/stable/worsened. Conclusions The recommendations aim to optimize accurate and meaningful interpretation of PRO data.
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Line graphs offer a clearer representation of trends than bar charts.
“We opted for line graphs over bar charts as they offer a clearer representation of trends [11, 63]”
From A Data Visualization Tool for Patients and Healthcare Providers to Communicate during Inpatient Stroke Rehabilitation (2024) · cites this paper as [63]
The Results recommend line graphs for showing individual patients’ scores over time, supporting the choice of line graphs for that purpose. They do not establish that line graphs represent trends more clearly than bar charts in general; the recommendation is specific to individual patient-reported outcome data. (LLM, conf=0.83)
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Research works printed but not linked: 16
- [1]U.S. Food and Drug Administration. (2009). Guidance for Industry. Patient Reported Outcome Measures: Use in Medical Product Development to Support Labeling Claims. Federal Register, 74(35), 65132– 3.
- [2]Acquadro C, Berzon R, Dubois D, Leidy NK, Marquis P, Revicki D, (2003). Incorporating the patient’s perspective into drug development and communication: an ad hoc task force report of the Patient-Reported Outcomes (PRO) Harmonization Group meeting at the Food and Drug Administration, February 16, 2001. Value Health, 6, 522– 31. 14627058
- [3]Greenhalgh J (2009). The applications of PROs in clinical practice: what are they, do they work, and why? Qual Life Res, 18, 115– 23. 19105048
- [4]Snyder CF, Aaronson NK (2009). Use of patient-reported outcomes in clinical practice. Lancet, 374, 369– 70. 19647598
- [5]Jensen RE, Snyder CF, Abernethy AP, Basch E, Reeve BB, Roberts A, (2014). A review of electronic patient reported outcomes systems used in cancer clinical care. J Oncol Pract, 10, e215– 222. 24301843 PMC4094646
- [6]Till JE, Osoba D, Pater JL, Young JR (1994). Research on health-related quality of life: dissemination into practical applications. Qual Life Res, 3(4), 279– 83. 7812281
- [7]Au H-J, Ringash J, Brundage M, Palmer M, Richardson H, Meyer RM, (2010). Added value of health-related quality of life measurement in cancer clinical trials: the experience of the NCIC CTG. Expert Rev Pharmacoecon Outcomes Res, 10(2), 119– 28. 20384559
- [8]Lipscomb J, Gotay CC, Snyder C (eds). (2005). Outcomes Assessment in Cancer: Measures, Methods, and Applications. Cambridge: Cambridge Univ Press.
- [9]Brundage M, Bass B, Ringash J, Foley K (2011). A knowledge translation challenge: clinical use of quality of life data from cancer clinical trials. Qual Life Res, 20, 979– 85. 21279446
- [10]Bezjak A, Ng P, Skeel R, Depetrillo AD, Comis R, Taylor KM (2001). Oncologists’ use of quality of life information: results of a survey of Eastern Cooperative Oncology Group physicians. Qual Life Res, 10, 1– 13. 11508471
- [11]Snyder CF, Blackford AL, Wolff AC, Carducci MA, Herman JM, Wu AW, (2013). Feasibility and value of PatientViewpoint: a web system for patient-reported outcomes assessment in clinical practice. Psychooncology, 22, 895– 901. 22544513 PMC3415606
- [12]Brundage MD, Smith KC, Little EA, Bantug ET, Snyder CF, PRO Data Presentation Stakeholder Advisory Board. (2015). Communicating patient-reported outcome scores using graphic formats: Results from a mixed methods evaluation. Qual Life Res, 24, 2457– 72. 26012839 PMC4891942
- [13]Bantug ET, Coles T, Smith KC, Snyder CF, Rouette J, Brundage MD, (2016). Graphical displays of patient-reported outcomes (PRO) for use in clinical practice: What makes a PRO picture worth a thousand words? Patient Educ Couns, 99, 483– 90. 26603445
- [14]Smith KC, Brundage MD, Tolbert E, Little EA, Bantug ET, Snyder C, (2016). Engaging stakeholders to improve presentation of patient-reported outcomes data in clinical practice. Support Care Cancer, 24, 4149– 57. 27165054
- [15]Snyder CF, Smith KC, Bantug ET, Tolbert EE, Blackford AL, Brundage MD, (2017). What do these scores mean? Presenting patient-reported outcomes data to patients and clinicians to improve interpretability. CANCER, 123, 1848– 59. 28085201 PMC5419857
- [17]Brundage MD, Blackford A, Tolbert E, Smith K, Bantug E, Snyder C, (2018). Presenting comparative study PRO results to clinicians and researchers: Beyond the eye of the beholder. Qual Life Res, 27, 75– 90. 29098606 PMC5770492
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Basch, E., Stover, A. M., Schrag, D., Chung, A., Jansen, J., Henson, S., Carr, P., Ginos, B., Deal, A., Spears, P. A., et al. (2020) · JCO Clinical Cancer Informatics · doi:10.1200/cci.20.00081 · Cited by 194 · see citing works
Self-citationRamesh, S. H., Ouskine, A., Khorasani, E., Ebrahimipour, M., Finestone, H., Chan, A. D. C., & Rajabiyazdi, F. (2024) · Graphics Interface · doi:10.1145/3670947.3670978 · Cited by 7 · see citing works
- Authors
- Panel, P. D. P. D., Snyder, C., Smith, K., Holzner, B., Rivera, Y. M., Bantug, E., & Brundage, M.
- Affiliations
- Johns Hopkins University (US)
- Innsbruck Medical University (AT)
- Corresponding author
- Snyder, Claire
- Venue
- Quality of Life Research
- Published
- 2018-10-10
- Volume
- 28
- Issue
- 2
- Pages
- 345-356
- ISSN
- 0962-9343 (ISSN-L)
- 1573-2649
- PMC
- PMC6363861
- OpenAlex
- W2897499075
- Cited by
- 124
- References
- 0
- Citations by year
- 2026: 16 · 2025: 13 · 2024: 14 · 2023: 15 · 2022: 19 · 2021: 23 · 2020: 20 · 2019: 4
- FWCI
- 4.42
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Quality of Life Research (publishedVersion)
- PubMed (publishedVersion)
- White Rose Research Online (University of Leeds, The University of Sheffield, University of York) (acceptedVersion)
- PubMed Central (acceptedVersion)
- Bristol Research (University of Bristol) (acceptedVersion, other-oa)
- Funders
- Patient-Centered Outcomes Research Institute
- National Cancer Institute (P30CA006973)
- Topics
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Social Sciences › Sociology and Political Science › Delphi Technique in Research
- Physical Sciences › Computer Science › Computer Vision and Pattern Recognition › Data Visualization and Analytics
- Keywords
- patient-reported outcomes, graphical data display, data visualization, score interpretation, clinically important difference, individual patient data, decision aids, cancer survivors, stakeholder consensus, patient-centered care
- MeSH terms
- Patient Reported Outcome Measures, Female, Humans, Quality of Life, Surveys and Questionnaires, Patient-Centered Care
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