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

Snyder, Claire; Smith, Katherine Clegg; Holzner, Bernhard; Rivera, Yonaira M.; Bantug, Elissa; Brundage, Michael

doi:10.1007/s11136-018-2020-3

Cited by 78 publications

(101 citation statements)

References 14 publications

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“…Whereas line graphs and pie charts seemed to result in better cognitive and affective outcomes, these results were only based on one significant result each. While a previous review in general health care [8] recommends using icon arrays or bar charts to display outcome information, recent studies on the display of HRQL information specifically, suggested using pie charts [44,45]. Another issue is the direction of display of HRQL data when using bar or line graphs.…”

Section: Discussionmentioning

confidence: 99%

Communicating treatment risks and benefits to cancer patients: a systematic review of communication methods

et al. 2020

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Purpose Cancer patients are increasingly involved in decision-making processes. Hence, clinicians need to inform patients about the risks and benefits of different treatment options in order for patients to make well informed decisions. The aim of this review is to determine the effects of methods of communicating prognostic information about (1) disease progression (survival, progression, recurrence and remission), (2) side effects and complications and (3) health-related quality of life (HRQL) on cognitive, affective and behavioral outcomes in cancer patients. Methods A literature search was performed to select articles that were published up to November 2019 and that examined verbal and/or visual risk communication interventions in an oncological clinical setting. Results The search yielded 14,875 studies; 28 studies were ultimately included. For disease progression information, we found that framing affects treatment choice. Furthermore, limiting the amount of progression information in a graphical display could benefit patients' understanding of risks and benefits. For prognostic information about side effects and complications, precise and defined risk information was better understood than information presented in words. When displaying HRQL data, no consensus was found on which graph type to use. Conclusion Great heterogeneity in the results and methodology and in the compared communication formats precluded us from drawing any further conclusions. Practical implications for clinicians are to consider the effects that different types of framing might have on the patient and to not rely exclusively on words to describe risks, but rather include at least some form of numbers or visualization.

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Section: Discussionmentioning

confidence: 99%

Communicating treatment risks and benefits to cancer patients: a systematic review of communication methods

et al. 2020

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“…54,55 Conversely, a panel of experts in a third article recommended line graphs for longitudinal data. 56 Metaphorical icons increased comprehension in some cases 57 but not when patients interpreted them too literally. For example, patients in one study interpreted icons of fruit baskets, intended to represent the number of fruit servings they had consumed, to mean they consumed each of the illustrated fruits.…”

Section: Characteristics Of Articles With Human Patients Researchmentioning

confidence: 97%

“…62 Several articles showed that inclusion of contextual information in visualizations (e.g., reference ranges and explanatory text), especially when personalized, also improves objective comprehension. 45,46,[55][56][57][58]60 Although these components are also helpful for patients interpreting medium risk clinical scenarios and borderline test results, these scenarios remained the most challenging for patients to interpret. 47,63 The only study measuring a clinical outcome reported a trend of decreasing blood glucose and hemoglobin A1c levels over 3 months among participants who completed a webbased self-monitoring intervention that included line graphs of blood glucose over time.…”

Section: Characteristics Of Articles With Human Patients Researchmentioning

confidence: 99%

A Systematic Review of Patient-Facing Visualizations of Personal Health Data

et al. 2019

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Objectives As personal health data are being returned to patients with increasing frequency and volume, visualizations are garnering excitement for their potential to facilitate patient interpretation. Evaluating these visualizations is important to ensure that patients are able to understand and, when appropriate, act upon health data in a safe and effective manner. The objective of this systematic review was to review and evaluate the state of the science of patient-facing visualizations of personal health data. Methods We searched five scholarly databases (PubMed, Embase, Scopus, ACM Digital Library [Association for Computing Machinery Digital Library], and IEEE Computational Index [Institute of Electrical and Electronics Engineers Computational Index]) through December 1, 2018 for relevant articles. We included English-language articles that developed or tested one or more patient-facing visualizations for personal health data. Three reviewers independently assessed quality of included articles using the Mixed methods Appraisal Tool. Characteristics of included articles and visualizations were extracted and synthesized. Results In 39 articles included in the review, there was heterogeneity in the sample sizes and methods for evaluation but not sample demographics. Few articles measured health literacy, numeracy, or graph literacy. Line graphs were the most common visualization, especially for longitudinal data, but number lines were used more frequently in included articles over past 5 years. Article findings suggested more patients understand the number lines and bar graphs compared with line graphs, and that color is effective at communicating risk, improving comprehension, and increasing confidence in interpretation. Conclusion In this review, we summarize types and components of patient-facing visualizations and methodologies for development and evaluation in the reviewed articles. We also identify recommendations for future work relating to collecting and reporting data, examining clinically actionable boundaries for diverse data types, and leveraging data science. This work will be critically important as patient access of their personal health data through portals and mobile devices continues to rise.

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“…Additional initiatives include PROTEUS Consortium (Patient-Reported Outcomes Tools: Engaging Users & Stakeholders) [49], which aims to promote the uptake and use of tools to support high quality PRO trial data including tools such as: SPIRIT (Standard Protocol Items: Recommendations for Interventional Trials) PRO-Extension [12]; ISOQOL (International Society for Quality of Life Research) Minimum Standards for PRO Measures in patient-centered outcomes and comparative effectiveness research [50]; SISAQOL (Setting International Standards in Analysing Patient-Reported Outcomes and Quality of Life Endpoints Data) [51]; CONSORT (Consolidated Standards of Reporting Trials) PRO-Extension [52] Stakeholder-Driven, Evidence-Based Standards for Presenting PROs in Clinical Practice [53]; and Clinician's Checklist for Reading and Using an Article About PROs However, greater work needs to be done to capture PRO data in a rigorous efficient way across disciplines. Furthermore, key societies like Macmillan Cancer Support, ASCO and the NCRI are working on the endorsement of the dissemination of PRO trial studies, which might help to have a wider reach for spreading PRO trial results and consequently a further impact [54,55].…”

Section: Discussionmentioning

confidence: 99%

The impact of patient-reported outcome data from clinical trials: perspectives from international stakeholders

Rivera

McMullan

Jones

et al. 2020

J Patient Rep Outcomes

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Background: Patient-reported outcomes (PROs) are increasingly collected in clinical trials as they provide unique information on the physical, functional and psychological impact of a treatment from the patient's perspective. Recent research suggests that PRO trial data have the potential to inform shared decision-making, support pharmaceutical labelling claims and influence healthcare policy and practice. However, there remains limited evidence regarding the actual impact associated with PRO trial data and how to maximise PRO impact to benefit patients and society. Thus, our objective was to qualitatively explore international stakeholders' perspectives surrounding: a) the impact of PRO trial data, b) impact measurement metrics, and c) barriers and facilitators to effectively maximise the impact of PRO trial data upon patients and society. Methods: Semi-structured interviews with 24 international stakeholders were conducted between May and October 2018. Data were coded and analysed using reflexive thematic analysis. Results: International stakeholders emphasised the impact of PRO trial data to benefit patients and society. Influence on policy-impact, including changes to clinical healthcare practice and guidelines, drug approval and promotional labelling claims were common types of PRO impact reported by interviewees. Interviewees suggested impact measurement metrics including: number of pharmaceutical labelling claims and interviews with healthcare practitioners to determine whether PRO data were incorporated in clinical decision-making. Key facilitators to PRO impact highlighted by stakeholders included: standardisation of PRO tools; consideration of health utilities when selecting PRO measures; adequate funding to support PRO research; improved reporting and dissemination of PRO trial data by key opinion leaders and patients; and development of legal enforcement of the collection of PRO data. Conclusions: Determining the impact of PRO trial data is essential to better allocate funds, minimise research waste and to help maximise the impact of these data for patients and society. However, measuring the impact of PRO trial data through metrics is a challenging task, as current measures do not capture the total impact of PRO research. Broader international multi-stakeholder engagement and collaboration is needed to standardise PRO assessment and maximise the impact of PRO trial data to benefit patients and society.

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

Abstract: This is a repository copy of Making a picture worth a thousand numbers: recommendations for graphically displaying patient-reported outcomes data.

Cited by 78 publications

References 14 publications

Communicating treatment risks and benefits to cancer patients: a systematic review of communication methods

Communicating treatment risks and benefits to cancer patients: a systematic review of communication methods

A Systematic Review of Patient-Facing Visualizations of Personal Health Data

The impact of patient-reported outcome data from clinical trials: perspectives from international stakeholders

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