Skip to main content
Top
Gepubliceerd in: Quality of Life Research 2/2019

10-10-2018

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

Auteurs: Claire Snyder, Katherine Smith, Bernhard Holzner, Yonaira M. Rivera, Elissa Bantug, Michael Brundage, PRO Data Presentation Delphi Panel

Gepubliceerd in: Quality of Life Research | Uitgave 2/2019

Log in om toegang te krijgen
share
DELEN

Deel dit onderdeel of sectie (kopieer de link)

  • Optie A:
    Klik op de rechtermuisknop op de link en selecteer de optie “linkadres kopiëren”
  • Optie B:
    Deel de link per e-mail

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.
Bijlagen
Alleen toegankelijk voor geautoriseerde gebruikers
Literatuur
1.
go back to reference 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), 65132–65133. 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), 65132–65133.
2.
go back to reference Acquadro, C., Berzon, R., Dubois, D., Leidy, N. K., Marquis, P., Revicki, D., et al. (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, 522–531. CrossRefPubMed Acquadro, C., Berzon, R., Dubois, D., Leidy, N. K., Marquis, P., Revicki, D., et al. (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, 522–531. CrossRefPubMed
3.
go back to reference Greenhalgh, J. (2009). The applications of PROs in clinical practice: What are they, do they work, and why? Quality Life Research, 18, 115–123. CrossRef Greenhalgh, J. (2009). The applications of PROs in clinical practice: What are they, do they work, and why? Quality Life Research, 18, 115–123. CrossRef
4.
go back to reference Snyder, C. F., & Aaronson, N. K. (2009). Use of patient-reported outcomes in clinical practice. Lancet, 374, 369–370. CrossRefPubMed Snyder, C. F., & Aaronson, N. K. (2009). Use of patient-reported outcomes in clinical practice. Lancet, 374, 369–370. CrossRefPubMed
5.
go back to reference Jensen, R. E., Snyder, C. F., Abernethy, A. P., Basch, E., Reeve, B. B., Roberts, A., et al. (2014). A review of electronic patient reported outcomes systems used in cancer clinical care. Journal of Oncology Practice, 10, e215–e222. CrossRefPubMed Jensen, R. E., Snyder, C. F., Abernethy, A. P., Basch, E., Reeve, B. B., Roberts, A., et al. (2014). A review of electronic patient reported outcomes systems used in cancer clinical care. Journal of Oncology Practice, 10, e215–e222. CrossRefPubMed
6.
go back to reference Till, J. E., Osoba, D., Pater, J. L., & Young, J. R. (1994). Research on health-related quality of life: Dissemination into practical applications. Quality Life Research, 3(4), 279–283. CrossRef Till, J. E., Osoba, D., Pater, J. L., & Young, J. R. (1994). Research on health-related quality of life: Dissemination into practical applications. Quality Life Research, 3(4), 279–283. CrossRef
7.
go back to reference Au, H.-J., Ringash, J., Brundage, M., Palmer, M., Richardson, H., Meyer, R. M., et al. (2010). Added value of health-related quality of life measurement in cancer clinical trials: The experience of the NCIC CTG. Expert Review of Pharmacoeconomics & Outcomes Research, 10(2), 119–128. CrossRef Au, H.-J., Ringash, J., Brundage, M., Palmer, M., Richardson, H., Meyer, R. M., et al. (2010). Added value of health-related quality of life measurement in cancer clinical trials: The experience of the NCIC CTG. Expert Review of Pharmacoeconomics & Outcomes Research, 10(2), 119–128. CrossRef
8.
go back to reference Lipscomb, J., Gotay, C. C., & Snyder, C. (Eds.). (2005). Outcomes assessment in cancer: Measures, methods, and applications. Cambridge: Cambridge Univ Press. Lipscomb, J., Gotay, C. C., & Snyder, C. (Eds.). (2005). Outcomes assessment in cancer: Measures, methods, and applications. Cambridge: Cambridge Univ Press.
9.
go back to reference Brundage, M., Bass, B., Ringash, J., & Foley, K. (2011). A knowledge translation challenge: Clinical use of quality of life data from cancer clinical trials. Quality Life Research, 20, 979–985. CrossRef Brundage, M., Bass, B., Ringash, J., & Foley, K. (2011). A knowledge translation challenge: Clinical use of quality of life data from cancer clinical trials. Quality Life Research, 20, 979–985. CrossRef
10.
go back to reference Bezjak, A., Ng, P., Skeel, R., Depetrillo, A. D., Comis, R., & Taylor, K. M. (2001). Oncologists’ use of quality of life information: Results of a survey of Eastern Cooperative Oncology Group physicians. Quality Life Research, 10, 1–13. CrossRef Bezjak, A., Ng, P., Skeel, R., Depetrillo, A. D., Comis, R., & Taylor, K. M. (2001). Oncologists’ use of quality of life information: Results of a survey of Eastern Cooperative Oncology Group physicians. Quality Life Research, 10, 1–13. CrossRef
11.
go back to reference Snyder, C. F., Blackford, A. L., Wolff, A. C., Carducci, M. A., Herman, J. M., Wu, A. W., et al. (2013). Feasibility and value of PatientViewpoint: A web system for patient-reported outcomes assessment in clinical practice. Psychooncology, 22, 895–901. CrossRefPubMed Snyder, C. F., Blackford, A. L., Wolff, A. C., Carducci, M. A., Herman, J. M., Wu, A. W., et al. (2013). Feasibility and value of PatientViewpoint: A web system for patient-reported outcomes assessment in clinical practice. Psychooncology, 22, 895–901. CrossRefPubMed
12.
go back to reference Brundage, M. D., Smith, K. C., Little, E. A., Bantug, E. T., & Snyder, C. F., PRO Data Presentation Stakeholder Advisory Board (2015). Communicating patient-reported outcome scores using graphic formats: Results from a mixed methods evaluation. Quality Life Research, 24, 2457–2472. CrossRef Brundage, M. D., Smith, K. C., Little, E. A., Bantug, E. T., & Snyder, C. F., PRO Data Presentation Stakeholder Advisory Board (2015). Communicating patient-reported outcome scores using graphic formats: Results from a mixed methods evaluation. Quality Life Research, 24, 2457–2472. CrossRef
13.
go back to reference Bantug, E. T., Coles, T., Smith, K. C., Snyder, C. F., Rouette, J., Brundage, M. D., et al. (2016). Graphical displays of patient-reported outcomes (PRO) for use in clinical practice: What makes a PRO picture worth a thousand words? Patient Education and Counselling, 99, 483–490. CrossRef Bantug, E. T., Coles, T., Smith, K. C., Snyder, C. F., Rouette, J., Brundage, M. D., et al. (2016). Graphical displays of patient-reported outcomes (PRO) for use in clinical practice: What makes a PRO picture worth a thousand words? Patient Education and Counselling, 99, 483–490. CrossRef
14.
go back to reference Smith, K. C., Brundage, M. D., Tolbert, E., Little, E. A., Bantug, E. T., Snyder, C., et al. (2016). Engaging stakeholders to improve presentation of patient-reported outcomes data in clinical practice. Support Care Cancer, 24, 4149–4157. CrossRefPubMed Smith, K. C., Brundage, M. D., Tolbert, E., Little, E. A., Bantug, E. T., Snyder, C., et al. (2016). Engaging stakeholders to improve presentation of patient-reported outcomes data in clinical practice. Support Care Cancer, 24, 4149–4157. CrossRefPubMed
15.
go back to reference Snyder, C. F., Smith, K. C., Bantug, E. T., Tolbert, E. E., Blackford, A. L., Brundage, M. D., et al. (2017). What do these scores mean? Presenting patient-reported outcomes data to patients and clinicians to improve interpretability. Cancer, 123, 1848–1859. CrossRefPubMedPubMedCentral Snyder, C. F., Smith, K. C., Bantug, E. T., Tolbert, E. E., Blackford, A. L., Brundage, M. D., et al. (2017). What do these scores mean? Presenting patient-reported outcomes data to patients and clinicians to improve interpretability. Cancer, 123, 1848–1859. CrossRefPubMedPubMedCentral
16.
go back to reference Tolbert, E., Snyder, C., Bantug, E., Blackford, A., Smith, K., Brundage, M., et al. (2016). Graphing group-level data from research studies for presentation to patients in educational materials and decision aids. Quality Life Research, 15, 17. Tolbert, E., Snyder, C., Bantug, E., Blackford, A., Smith, K., Brundage, M., et al. (2016). Graphing group-level data from research studies for presentation to patients in educational materials and decision aids. Quality Life Research, 15, 17.
17.
go back to reference Brundage, M. D., Blackford, A., Tolbert, E., Smith, K., Bantug, E., Snyder, C., et al. (2018). Presenting comparative study PRO results to clinicians and researchers: Beyond the eye of the beholder. Quality Life Research, 27, 75–90. CrossRef Brundage, M. D., Blackford, A., Tolbert, E., Smith, K., Bantug, E., Snyder, C., et al. (2018). Presenting comparative study PRO results to clinicians and researchers: Beyond the eye of the beholder. Quality Life Research, 27, 75–90. CrossRef
Metagegevens
Titel
Making a picture worth a thousand numbers: recommendations for graphically displaying patient-reported outcomes data
Auteurs
Claire Snyder
Katherine Smith
Bernhard Holzner
Yonaira M. Rivera
Elissa Bantug
Michael Brundage
PRO Data Presentation Delphi Panel
Publicatiedatum
10-10-2018
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 2/2019
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-018-2020-3

Andere artikelen Uitgave 2/2019

Quality of Life Research 2/2019 Naar de uitgave