Making a picture worth a thousand numbers: recommendations for graphically displaying patient-reported outcomes data

PRO Data Presentation Delphi Panel

Research output: Contribution to journalArticle

5 Citations (Scopus)

Abstract

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.

Original languageEnglish (US)
Pages (from-to)345-356
Number of pages12
JournalQuality of Life Research
Volume28
Issue number2
DOIs
StatePublished - Feb 15 2019

Fingerprint

Data Display
Consensus
Decision Support Techniques
Research
Patient Reported Outcome Measures
Patient-Centered Care
Electronic Health Records
Caregivers
Survivors
Publications
Research Personnel
Neoplasms
Surveys and Questionnaires
Oncologists

Keywords

  • Cancer
  • Clinical practice
  • Consensus statements
  • Data display
  • Patient-reported outcomes

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health

Cite this

@article{9d5bf18249ad4a66ab1e4e5d9cf38cdc,
title = "Making a picture worth a thousand numbers: recommendations for graphically displaying patient-reported outcomes data",
abstract = "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.",
keywords = "Cancer, Clinical practice, Consensus statements, Data display, Patient-reported outcomes",
author = "{PRO Data Presentation Delphi Panel} and Claire Snyder and Katherine Smith and Bernhard Holzner and Rivera, {Yonaira M.} and Elissa Bantug and Michael Brundage and Daniel Weber and Ethan Basch and Neil Aaronson and Bryce Reeve and Galina Velikova and Andrea Heckert and Eden Stotsky-Himelfarb and Cynthia Chauhan and Vanessa Hoffman and Patricia Ganz and Lisa Barbera and Elizabeth Frank and Smith, {Mary Lou} and Arturo Durazo and Judy Needham and Nasso, {Shelley Fuld} and Robert Miller and Tenbroeck Smith and Deborah Struth and Alison Rein and Andre Dias and Charlotte Roberts and Nancy Smider and Gena Cook and Jakob Bjorner and Holly Witteman and Dolan, {James G.} and Jane Blazeby and Golub, {Robert M.} and Christine Laine and Scott Ramsey",
year = "2019",
month = "2",
day = "15",
doi = "10.1007/s11136-018-2020-3",
language = "English (US)",
volume = "28",
pages = "345--356",
journal = "Quality of Life Research",
issn = "0962-9343",
publisher = "Springer Netherlands",
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}

Making a picture worth a thousand numbers : recommendations for graphically displaying patient-reported outcomes data. / PRO Data Presentation Delphi Panel.

In: Quality of Life Research, Vol. 28, No. 2, 15.02.2019, p. 345-356.

Research output: Contribution to journalArticle

TY - JOUR

T1 - Making a picture worth a thousand numbers

T2 - recommendations for graphically displaying patient-reported outcomes data

AU - PRO Data Presentation Delphi Panel

AU - Snyder, Claire

AU - Smith, Katherine

AU - Holzner, Bernhard

AU - Rivera, Yonaira M.

AU - Bantug, Elissa

AU - Brundage, Michael

AU - Weber, Daniel

AU - Basch, Ethan

AU - Aaronson, Neil

AU - Reeve, Bryce

AU - Velikova, Galina

AU - Heckert, Andrea

AU - Stotsky-Himelfarb, Eden

AU - Chauhan, Cynthia

AU - Hoffman, Vanessa

AU - Ganz, Patricia

AU - Barbera, Lisa

AU - Frank, Elizabeth

AU - Smith, Mary Lou

AU - Durazo, Arturo

AU - Needham, Judy

AU - Nasso, Shelley Fuld

AU - Miller, Robert

AU - Smith, Tenbroeck

AU - Struth, Deborah

AU - Rein, Alison

AU - Dias, Andre

AU - Roberts, Charlotte

AU - Smider, Nancy

AU - Cook, Gena

AU - Bjorner, Jakob

AU - Witteman, Holly

AU - Dolan, James G.

AU - Blazeby, Jane

AU - Golub, Robert M.

AU - Laine, Christine

AU - Ramsey, Scott

PY - 2019/2/15

Y1 - 2019/2/15

N2 - 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.

AB - 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.

KW - Cancer

KW - Clinical practice

KW - Consensus statements

KW - Data display

KW - Patient-reported outcomes

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U2 - 10.1007/s11136-018-2020-3

DO - 10.1007/s11136-018-2020-3

M3 - Article

C2 - 30306533

AN - SCOPUS:85055268644

VL - 28

SP - 345

EP - 356

JO - Quality of Life Research

JF - Quality of Life Research

SN - 0962-9343

IS - 2

ER -