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Presented in part at the 2014 ASCO Annual Meeting, 2014 AcademyHealth Annual Research Meeting, and 2014 International Society for Quality of Life Research Annual Meeting.
Patient-reported outcomes (PROs) promote patient-centered care by using PRO research results (“group-level data”) to inform decision making and by monitoring individual patient’s PROs (“individual-level data”) to inform care. We investigated the interpretability of current PRO data presentation formats.
This cross-sectional mixed-methods study randomized purposively sampled cancer patients and clinicians to evaluate six group-data or four individual-data formats. A self-directed exercise assessed participants’ interpretation accuracy and ratings of ease-of-understanding and usefulness (0 = least to 10 = most) of each format. Semi-structured qualitative interviews explored helpful and confusing format attributes.
We reached thematic saturation with 50 patients (44 % < college graduate) and 20 clinicians. For group-level data, patients rated simple line graphs highest for ease-of-understanding and usefulness (median 8.0; 33 % selected for easiest to understand/most useful) and clinicians rated simple line graphs highest for ease-of-understanding and usefulness (median 9.0, 8.5) but most often selected line graphs with confidence limits or norms (30 % for each format for easiest to understand/most useful). Qualitative results support that clinicians value confidence intervals, norms, and p values, but patients find them confusing. For individual-level data, both patients and clinicians rated line graphs highest for ease-of-understanding (median 8.0 patients, 8.5 clinicians) and usefulness (median 8.0, 9.0) and selected them as easiest to understand (50, 70 %) and most useful (62, 80 %). The qualitative interviews supported highlighting scores requiring clinical attention and providing reference values.
This study has identified preferences and opportunities for improving on current formats for PRO presentation and will inform development of best practices for PRO presentation. Both patients and clinicians prefer line graphs across group-level data and individual-level data formats, but clinicians prefer greater detail (e.g., statistical details) for group-level data.
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U.S. Food and Drug Administration. (2009). Guidance for industry. Patient reported outcome measures: Use in medical product development to support labelling claims. Federal Register, 74, 65132–65133.
Acquadro, C., Berzon, R., Dubois, 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 in Health, 6, 522–531. CrossRefPubMed
Lipscomb, J., Gotay, C., & Snyder, C. (2005). Outcomes assessment in cancer: Measures, methods, and applications. Cambridge: Cambridge University Press.
Brundage, M., Bass, B., Jolie, R, et al. (2011). A knowledge translation challenge: Clinical use of quality of life data from cancer clinical trials. Quality of Life Research, 20(7), 979–985.
Brundage MD, Feldman-Stewart D, Bezjak A, et al. (2005). The value of quality of life information in a cancer treatment decision. ISOQOL 11th annual conference, San Francisco.
PROQOLID (2012). The patient-reported outcome and quality of life instruments database. http://www.proquolid.org.
PROMIS Software Demonstration (2012). http://nihpromis.org/software/demonstration.
Creswell, J. W. (2007). Qualitative inquiry and research design: Choosing among five approaches (2nd ed.). Thousand Oaks: Sage Publications.
Pope, C., Ziebland, S., & Mays, N. (1999). Analysing qualitative data. In C. Pope & N. Mays (Eds.), Qualitative research in health care (2nd ed., pp. 75–88). London: BMJ Publishing Group.
(2014). AtlasTi, in, ATLAS.ti Scientific Software Development GmbH.
- Communicating patient-reported outcome scores using graphic formats: results from a mixed-methods evaluation
Michael D. Brundage
Katherine C. Smith
Emily A. Little
Elissa T. Bantug
Claire F. Snyder
The PRO Data Presentation Stakeholder Advisory Board
- Springer International Publishing