Skip to main content
Top
Gepubliceerd in: Quality of Life Research 3/2019

29-11-2018

In proportion: approaches for displaying patient-reported outcome research study results as percentages responding to treatment

Auteurs: Elliott Tolbert, Michael Brundage, Elissa Bantug, Amanda L. Blackford, Katherine Smith, Claire Snyder, PRO Data Presentation Stakeholder Advisory Board

Gepubliceerd in: Quality of Life Research | Uitgave 3/2019

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 outcome (PRO) data from clinical trials can promote valuable patient–clinician communication and aid the decision-making process regarding treatment options. Despite these benefits, both patients and doctors face challenges in interpreting PRO scores. The purpose of this study was to identify best practices for presenting PRO results expressed as proportions of patients with changes from baseline (improved/stable/worsened) for use in patient educational materials and decision aids.

Methods

We electronically surveyed adult cancer patients/survivors, oncology clinicians, and PRO researchers, and conducted one-on-one cognitive interviews with patients/survivors and clinicians. Participants saw clinical trial data comparing two treatments as proportions changed using three different formats: pie charts, bar graphs, icon arrays. Interpretation accuracy, clarity, and format preference were analyzed quantitatively and online survey comments and interviews, qualitatively.

Results

The internet sample included 629 patients, 139 clinicians, and 249 researchers; 10 patients and 5 clinicians completed interviews. Bar graphs were less accurately interpreted than pie charts (OR 0.39; p < .0001) and icon arrays (OR 0.47; p < .0001). Bar graphs and icon arrays were less likely to be rated clear than pie charts (OR 0.37 and OR 0.18; both p < .0001). Qualitative data informed interpretation of these findings.

Conclusions

For communicating PROs as proportions changed in patient educational materials and decision aids, these results support the use of pie charts.
Literatuur
1.
go back to reference U.S. Food and Drug Administration: Guidance for Industry. (2009). Patient reported outcome measures: Use in medical product development to support labeling claims. Federal Register, 74, 65132–65133. U.S. Food and Drug Administration: Guidance for Industry. (2009). Patient reported outcome measures: Use in medical product development to support labeling claims. Federal Register, 74, 65132–65133.
2.
go back to reference Acquadro, C., Berzon, R., Dubois, D., Leidy, N. K., Marquis, P., Revicki, D., & Rothman, M. (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(5), 522–531.CrossRefPubMed Acquadro, C., Berzon, R., Dubois, D., Leidy, N. K., Marquis, P., Revicki, D., & Rothman, M. (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(5), 522–531.CrossRefPubMed
3.
go back to reference Lipscomb, J., Gotay, C. C., & Snyder, C. (Eds.). (2005). Outcomes assessment in cancer: Measures, methods and applications. Cambridge, MA: Cambridge University Press. Lipscomb, J., Gotay, C. C., & Snyder, C. (Eds.). (2005). Outcomes assessment in cancer: Measures, methods and applications. Cambridge, MA: Cambridge University Press.
4.
go back to reference Greenhalgh, J. (2009). The applications of PROs in clinical practice: What are they, do they work, and why? Quality of Life Research, 18(1), 115–123.CrossRefPubMed Greenhalgh, J. (2009). The applications of PROs in clinical practice: What are they, do they work, and why? Quality of Life Research, 18(1), 115–123.CrossRefPubMed
5.
go back to reference Bruner, D. W., Bryan, C. J., Aaronson, N., Blackmore, C. C., Brundage, M., Cella, D., et al. (2007). Issues and challenges with integrating patient-reported outcomes in clinical trials supported by the National Cancer Institute-sponsored clinical trials networks. Journal of Clinical Oncology, 25(32), 5051–5057.CrossRefPubMedPubMedCentral Bruner, D. W., Bryan, C. J., Aaronson, N., Blackmore, C. C., Brundage, M., Cella, D., et al. (2007). Issues and challenges with integrating patient-reported outcomes in clinical trials supported by the National Cancer Institute-sponsored clinical trials networks. Journal of Clinical Oncology, 25(32), 5051–5057.CrossRefPubMedPubMedCentral
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 of Life Research, 3(4), 279–283.CrossRefPubMed Till, J. E., Osoba, D., Pater, J. L., & Young, J. R. (1994). Research on health-related quality of life: Dissemination into practical applications. Quality of Life Research, 3(4), 279–283.CrossRefPubMed
7.
go back to reference Au, H. J., Ringash, J., Brundage, M., Palmer, M., Richardson, H., & Meyer, R. M. (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. https://doi.org/10.1586/erp.10.15.CrossRef Au, H. J., Ringash, J., Brundage, M., Palmer, M., Richardson, H., & Meyer, R. M. (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. https://​doi.​org/​10.​1586/​erp.​10.​15.CrossRef
8.
go back to reference Brundage, M. D., Feldman-Stewart, D., Bezjak, A., Leis, A., Degner, L., Fleming, S. et al. (2005). The value of quality of life information in a cancer treatment decision. In ISOQOL 11th annual conference, San Francisco Brundage, M. D., Feldman-Stewart, D., Bezjak, A., Leis, A., Degner, L., Fleming, S. et al. (2005). The value of quality of life information in a cancer treatment decision. In ISOQOL 11th annual conference, San Francisco
9.
go back to reference Brundage, M., Bass, B., Jolie, R., & Foley, K. (2011). A knowledge translation challenge: Clinical use of quality of life data from cancer clinical trials. Quality of Life Research, 20(7), 979–985.CrossRefPubMed Brundage, M., Bass, B., Jolie, R., & Foley, K. (2011). A knowledge translation challenge: Clinical use of quality of life data from cancer clinical trials. Quality of Life Research, 20(7), 979–985.CrossRefPubMed
10.
go back to reference Snyder, C. F., & Aaronson, N. K. (2009). Use of patient-reported outcomes in clinical practice. Lancet, 374(9687), 369–370.CrossRefPubMed Snyder, C. F., & Aaronson, N. K. (2009). Use of patient-reported outcomes in clinical practice. Lancet, 374(9687), 369–370.CrossRefPubMed
11.
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 of Life Research, 10(1), 1–13.CrossRefPubMed 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 of Life Research, 10(1), 1–13.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 of Life Research, 24(10), 2457–2472.CrossRefPubMedPubMedCentral 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 of Life Research, 24(10), 2457–2472.CrossRefPubMedPubMedCentral
13.
go back to reference Smith, K. C., Brundage, M. D., Tolbert, E., Little, E. A., Bantug, E. T., Snyder, C. F., & PRO Data Presentation Stakeholder Advisory Board. (2016). Engaging stakeholders to improve presentation of patient-reported outcomes data in clinical practice. Support Care in Cancer, 24(10), 1–9. https://doi.org/10.1007/s00520-016-3240-0.CrossRef Smith, K. C., Brundage, M. D., Tolbert, E., Little, E. A., Bantug, E. T., Snyder, C. F., & PRO Data Presentation Stakeholder Advisory Board. (2016). Engaging stakeholders to improve presentation of patient-reported outcomes data in clinical practice. Support Care in Cancer, 24(10), 1–9. https://​doi.​org/​10.​1007/​s00520-016-3240-0.CrossRef
14.
go back to reference Brundage, M., Blackford, A., Tolbert, E., Smith, K., Bantug, E., Snyder, C., & PRO Data Presentation Stakeholder Advisory Board. (2018). Presenting comparative study PRO results to clinicians and researchers: Beyond the eye of the beholder. Quality of Life Research, 27(1), 75–90.CrossRefPubMed Brundage, M., Blackford, A., Tolbert, E., Smith, K., Bantug, E., Snyder, C., & PRO Data Presentation Stakeholder Advisory Board. (2018). Presenting comparative study PRO results to clinicians and researchers: Beyond the eye of the beholder. Quality of Life Research, 27(1), 75–90.CrossRefPubMed
16.
go back to reference Zipkin, D. A., Umscheid, C. A., Keating, N. L., et al. (2014). Evidence-based risk communication: A systematic review. Annals of Internal Medicine, 161, 270–280.CrossRefPubMed Zipkin, D. A., Umscheid, C. A., Keating, N. L., et al. (2014). Evidence-based risk communication: A systematic review. Annals of Internal Medicine, 161, 270–280.CrossRefPubMed
17.
go back to reference Creswell, J. W., Plano Clark, V. L., Gutmann, M. L., & Hanson, W. E. (2003). Advanced mixed methods research designs. Handbook of mixed methods in social and behavioral research (pp. 209–240). Thousand Oaks: Sage Creswell, J. W., Plano Clark, V. L., Gutmann, M. L., & Hanson, W. E. (2003). Advanced mixed methods research designs. Handbook of mixed methods in social and behavioral research (pp. 209–240). Thousand Oaks: Sage
18.
go back to reference AtlasTi, in, ATLAS.ti Scientific Software Development GmbH. 2014. AtlasTi, in, ATLAS.ti Scientific Software Development GmbH. 2014.
21.
go back to reference Le, T., Aragon, C., Thompson, H. J., & Demiris, G. (2014). Elementary graphical perception for older adults: A comparison with the general population. Perception, 43(11), 1249–1260.CrossRefPubMed Le, T., Aragon, C., Thompson, H. J., & Demiris, G. (2014). Elementary graphical perception for older adults: A comparison with the general population. Perception, 43(11), 1249–1260.CrossRefPubMed
22.
go back to reference Corbin, J. C., Reyna, V. F., Weldon, R. B., & Brainerd, C. J. (2015). How reasoning, judgment, and decision making are colored by gist-based intuition: A fuzzy-trace theory approach. Journal of Applied Research in Memory and Cognition, 4(4), 344–355.CrossRefPubMedPubMedCentral Corbin, J. C., Reyna, V. F., Weldon, R. B., & Brainerd, C. J. (2015). How reasoning, judgment, and decision making are colored by gist-based intuition: A fuzzy-trace theory approach. Journal of Applied Research in Memory and Cognition, 4(4), 344–355.CrossRefPubMedPubMedCentral
23.
go back to reference Joseph-Williams, N., Newcombe, R., Politi, M., Durand, M. A., Sivell, S., Stacey, D., et al. (2014). Toward minimum standards for certifying patient decision aids a modified Delphi consensus process. Medical Decision Making, 34(6), 699–710.CrossRefPubMed Joseph-Williams, N., Newcombe, R., Politi, M., Durand, M. A., Sivell, S., Stacey, D., et al. (2014). Toward minimum standards for certifying patient decision aids a modified Delphi consensus process. Medical Decision Making, 34(6), 699–710.CrossRefPubMed
24.
go back to reference McDonald, H., Charles, C., & Gafni, A. (2014). Assessing the conceptual clarity and evidence base of quality criteria/standards developed for evaluating decision aids. Health Expectations, 17(2), 232–243.CrossRefPubMed McDonald, H., Charles, C., & Gafni, A. (2014). Assessing the conceptual clarity and evidence base of quality criteria/standards developed for evaluating decision aids. Health Expectations, 17(2), 232–243.CrossRefPubMed
Metagegevens
Titel
In proportion: approaches for displaying patient-reported outcome research study results as percentages responding to treatment
Auteurs
Elliott Tolbert
Michael Brundage
Elissa Bantug
Amanda L. Blackford
Katherine Smith
Claire Snyder
PRO Data Presentation Stakeholder Advisory Board
Publicatiedatum
29-11-2018
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 3/2019
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-018-2065-3

Andere artikelen Uitgave 3/2019

Quality of Life Research 3/2019 Naar de uitgave