ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2019
Making a picture worth a thousand numbers: recommendations for graphically displaying patient-reported outcomes data.
Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 68 papers, 2 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
68 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Communicating treatment risks and benefits to cancer patients: a systematic review of communication methods.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2020Pooled it
- A Systematic Review of Patient-Facing Visualizations of Personal Health Data.Applied clinical informatics · 2019Pooled it
- Quantitative assessment of visual designs for communicating patient-reported outcomes in breast cancer care to patients.Journal of patient-reported outcomes · 2025Trial
- Making Patient-reported Outcome Measures Patient-friendly: Applying "Patient-reported Outcomes Tools: Engaging Users and Stakeholders" Guidelines to a Graphical "Report Card" for Cleft Outcomes.Plastic and reconstructive surgery. Global open · 2026Article
- Designing oncology-specific patient-reported outcome dashboards: end-user preferences for reference curve inclusion and visualization in pediatric cancer care.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Article
- Digital Platform to Provide Health Data Feedback for Neurorehabilitation Patients: User-Centered Development and Proof-of-Concept Usability Study.JMIR rehabilitation and assistive technologies · 2026Article
- From framework to practice: applying the proteus-practice framework to learn lessons for integrating PROs in clinical care.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Article
- A mixed methods study on patients' and healthcare professionals' understanding of the graphical presentation of patient-reported outcome data at an inpatient unit for psychosomatic medicine.Journal of patient-reported outcomes · 2026Article
- Multi-stakeholder use of patient experience data (PED): current state and future opportunities for the application of PED to inform decision-making.Journal of patient-reported outcomes · 2026Review
- From participatory design to clinical routine: new concepts for visualizing patient-reported outcomes in breast cancer care.Journal of patient-reported outcomes · 2026Article
- Visualizing Health Related Quality of Life (HRQoL): understanding comprehension of HRQoL graphs in the allogeneic hematopoietic cell transplant setting.Journal of cancer survivorship : research and practice · 2026Article
- The Experience of Spanish Cancer Patients and Professionals With Quality of Life Assessment in Clinical Practice.Journal of patient experience · 2026Article
- A Targeted Literature Review and Patient Focus Groups to Develop Recommendations for Reporting Patient-Reported Measures to Patients and Consumers in Clinical Quality Registries.Health services insights · 2026Article
- Usability testing of an individualized decision aid for total knee arthroplasty.PEC innovation · 2025Article
- Longitudinal graphics of patient-reported physical function in patients treated for hematologic malignancies.BMC medical research methodology · 2025Article
- The current use and application of thresholds for clinical importance of the EORTC QLQ-C30, the EORTC CAT core and the EORTC QLQ-C15-PAL- a systematic scoping review.Health and quality of life outcomes · 2025Article
- Meaningful differences in patient-reported outcome measurement scores in liver disease.Hepatology communications · 2025Article
- The Role of Patient-Reported Outcomes in Cirrhosis.The American journal of gastroenterology · 2025Review
- A Consistent Lack of Consistency: Definitions, Evidentiary Expectations and Potential Use of Meaningful Change Data in Clinical Outcome Assessments Across Stakeholders. Results from a DIA Working Group Literature Review and Survey.Therapeutic innovation & regulatory science · 2025Review
- Best practices and pragmatic approaches for patient-reported outcomes and quality of life measures in cancer clinical trials.Journal of the National Cancer Institute. Monographs · 2025Article
8 more citing papers are in PubMed but not listed here.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors.
Funding
Abstract
purposePatient-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.
methodsThe 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.
resultsIssues 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.
conclusionsThe recommendations aim to optimize accurate and meaningful interpretation of PRO data.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.