nach oben

Erschienen in:

10.10.2018

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

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

Erschienen in: Quality of Life Research | Ausgabe 2/2019

Einloggen, um Zugang zu erhalten

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.

Nur mit Berechtigung zugänglich

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.

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

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

Snyder, C. F., & Aaronson, N. K. (2009). Use of patient-reported outcomes in clinical practice. Lancet, 374, 369–370.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

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

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

Lipscomb, J., Gotay, C. C., & Snyder, C. (Eds.). (2005). Outcomes assessment in cancer: Measures, methods, and applications. Cambridge: Cambridge Univ Press.

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.

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.

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.

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.

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.

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.

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.

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.

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

18.

Qualtrics Survey Software. Retrieved August 7, 2018, from https://ictr.johnshopkins.edu/programs_resources/programs-resources/informatics/qualtrics-survey/.

Titel: Making a picture worth a thousand numbers: recommendations for graphically displaying patient-reported outcomes data
verfasst von: Claire Snyder
Katherine Smith
Bernhard Holzner
Yonaira M. Rivera
Elissa Bantug
Michael Brundage
PRO Data Presentation Delphi Panel
Publikationsdatum: 10.10.2018
Verlag: Springer International Publishing
Erschienen in: Quality of Life Research / Ausgabe 2/2019
Print ISSN: 0962-9343
Elektronische ISSN: 1573-2649
DOI: https://doi.org/10.1007/s11136-018-2020-3

Springer Medizin

Abstract

Purpose

Methods

Results

Conclusions

Bitte loggen Sie sich ein, um Zugang zu diesem Inhalt zu erhalten

Weitere Artikel der Ausgabe 2/2019

Hemoglobin F as a predictor of health-related quality of life in children with sickle cell anemia

Association between disaster experience and quality of life: the mediating role of disaster risk perception

The paradox of self-rated health following joint replacement surgery

Problems persist in reporting of methods and results for the WOMAC measure in hip and knee osteoarthritis trials

Test–retest reliability and validity of a single-item Self-reported Family Happiness Scale in Hong Kong Chinese: findings from Hong Kong Jockey Club FAMILY Project

More than health: quality of life trajectories among older adults—findings from The Irish Longitudinal Study of Ageing (TILDA)