Search

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. [ABSTRACT FROM AUTHOR]

Purpose: Patient-reported outcome (PRO) results from clinical trials can inform clinical care, but PRO interpretation is challenging. We evaluated the interpretation accuracy and perceived clarity of various strategies for displaying clinical trial PRO findings.Methods: We conducted an e-survey of oncology clinicians and PRO researchers (supplemented by one-on-one clinician interviews) that randomized respondents to view one of the three line-graph formats (average scores over time for two treatments on four domains): (1) higher scores consistently indicating "better" patient status; (2) higher scores indicating "more" of what was being measured (better for function, worse for symptoms); or (3) normed scores. Two formats displayed proportions changed (pie/bar charts). Multivariate modeling was used to analyze interpretation accuracy and clarity ratings.Results: Two hundred and thirty-three clinicians and 248 researchers responded; ten clinicians were interviewed. Line graphs with "better" directionality were more likely to be interpreted accurately than "normed" line graphs (OR 1.55; 95% CI 1.01-2.38; p = 0.04). No significant differences were found between "better" and "more" formats. "Better" formatted graphs were also more likely to be rated "very clear" versus "normed" formatted graphs (OR 1.91; 95% CI 1.44-2.54; p < 0.001). For proportions changed, respondents were less likely to make an interpretation error with pie versus bar charts (OR 0.35; 95% CI 0.2-0.6; p < 0.001); clarity ratings did not differ between formats. Qualitative findings informed the interpretation of the survey findings.Conclusions: Graphic formats for presenting PRO data differ in how accurately they are interpreted and how clear they are perceived to be. These findings will inform the development of best practices for optimally reporting PRO findings. [ABSTRACT FROM AUTHOR]

Background: Patient-reported outcomes (PROs) (eg, symptoms, functioning) can inform patient management. However, patients and clinicians often have difficulty interpreting score meaning. The authors tested approaches for presenting PRO data to improve interpretability.Methods: This mixed-methods study included an Internet survey of cancer patients/survivors, oncology clinicians, and PRO researchers circulated via snowball sampling, plus individual in-person interviews. Clinical importance was conveyed using 3 approaches (presented in random order): normal score range shaded green, concerning scores circled in red, and red threshold lines indicating normal versus concerning scores. Versions also tested 2 approaches to score directionality: higher = more (better for function, worse for symptoms) and higher = better for both function and symptoms. Qualitative data from online comments and in-person interviews supplemented quantitative results on interpretation accuracy, clarity, and the "most useful" format.Results: The survey included 1113 respondents: 627 survivors, 236 clinicians, and 250 researchers, plus 10 patients and 10 clinicians who were purposively sampled interviewees. Interpretation accuracy ranged from 53% to 100%. The formats in which higher = better were interpreted more accurately versus those in which higher = more (odds ratio [OR], 1.30; 95% confidence interval [CI], 1.07-1.58) and were more likely to be rated "very"/"somewhat" clear (OR, 1.39; 95% CI, 1.13-1.70) and "very" clear (OR, 1.36; 95% CI, 1.18-1.58). Red circle formats were interpreted more accurately than green-shaded formats when the first format presented (OR, 1.29; 95% CI, 1.00-1.65). Threshold-line formats were more likely to be rated "very" clear than green-shaded (OR, 1.43; 95% CI, 1.19-1.71) and red-circled (OR, 1.22, 95% CI, 1.02-1.46) formats. Threshold lines were most often selected as "most useful."Conclusions: The current results support presenting PRO data with higher = better directionality and threshold lines indicating normal versus concerning scores. Cancer 2017;123:1848-1859. © 2017 The Authors. Cancer published byWiley Periodicals, Inc. on behalf of American Cancer Society. This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations aremade. [ABSTRACT FROM AUTHOR]

Purpose: Patient-reported outcomes (PROs) can promote patient-centered care, but previous research has documented interpretation challenges among clinicians and patients. We engaged stakeholders to improve formats for presenting individual-level PRO data (for patient monitoring) and group-level PRO data (for reporting comparative clinical studies).Methods: In an iterative process, investigators partnered with stakeholder workgroups of clinicians and patients to address previously identified interpretation challenges. Candidate approaches were then tested in semi-structured, one-on-one interviews with cancer patients and clinicians. Interpretation issues addressed included conveying score meaning (i.e., what is good/bad) and directional inconsistency (whether higher scores are better/worse). An additional issue for individual-level PROs was highlighting potentially concerning scores and, for group-level PROs, identifying important between-group differences (clinical, statistical).Results: One-on-one interviews in a purposive sample of clinicians (n = 40) and patients (n = 39) provided insights regarding approaches to address issues identified. For example, adding descriptive labels to the Y-axis (none, mild, moderate, severe) helps address directional inconsistency and aids interpretation of score meaning. Red circles around concerning data points or a threshold line indicating worse-than-normal scores indicate possibly concerning scores for individual-level PRO data. For group-level PRO data, patients and some clinicians are confused by confidence limits and clinical versus statistical significance, but almost all clinicians want p values displayed.Conclusions: Variations in interpretation accuracy demonstrate the importance of presenting PRO data in ways that promote understanding and use. In an iterative stakeholder-driven process, we developed improved PRO data presentation formats, which will be evaluated in further research across a large population of patients and clinicians. [ABSTRACT FROM AUTHOR]