To investigate ways to visually display individual and aggregate patient-reported outcomes (PRO) data to help patients, clinicians, and researchers understand and use the data
|Observational: cross-sectional study
|1,256 cancer survivors, 608 cancer clinicians, and 747 PRO researchers
- Multiple formats of line graphs to display an individual patient’s symptoms and functioning over time
- Bar graphs, pie charts, and icon arrays to compare treatment options by displaying aggregate PRO scores from multiple patients
- Multiple formats of line graphs to compare treatment options over time by displaying aggregate PRO scores from multiple patients
Patients’, clinicians’, and researchers’ accuracy of data interpretation, perception of clarity of formats, choice of most useful format
The research team conducted an online survey of 1,256 cancer survivors, 608 cancer clinicians, and 747 PRO researchers to compare data-display formats for PRO data. PRO data are outcomes reported by patients about their health conditions and treatments. These data may include measures of symptoms, functional status, and health-related quality of life, among others. The research team worked with patients and clinicians to create the formats for the data displays. The team tested data displays for three purposes:
- To help patients and clinicians track symptoms and functioning for an individual patient over time
- To help patients compare treatment options using aggregate PRO scores from multiple patients
- To help clinicians and researchers compare treatment options using aggregate PRO scores from multiple patients
Helping patients and clinicians track symptoms and functioning. Patients, clinicians, and researchers viewed three display formats for showing clinically concerning scores. Participants preferred a display format with threshold lines, saying that they found it clearer than other formats to indicate whether scores were normal or clinically concerning.
In addition, patients, clinicians, and researchers viewed one of two approaches to score directionality. Participants interpreted the information more accurately and rated clarity better when higher scores reflected better health outcomes than when higher scores indicated that more of an outcome was present.
Helping patients compare treatment options. Patients, clinicians, and researchers viewed bar graphs, pie charts, and icon arrays that displayed aggregate PRO scores from multiple patients, showing the proportion of patients whose conditions improved, stayed stable, or got worse. Participants found that pie charts were easiest to interpret accurately, and perceived them to be clear and useful.
For displaying average scores over time, participants looked at three types of line graphs. Participants interpreted line graphs of scores over time most accurately when higher scores indicated better health outcomes.
Helping clinicians and researchers compare treatment options. Clinicians and researchers viewed bar graphs and pie charts that displayed aggregate PRO scores from multiple patients, as well as the same line graphs described above. In addition, the research team tested other variations of line graphs, including displaying p values, confidence intervals, and indications of clinically important differences.
Participants interpreted the information from pie charts and bar graphs equally accurately and also rated their clarity and usefulness the same. For line graphs, participants interpreted the information more accurately and rated displays as clearer when higher scores reflected better health outcomes as opposed to scores compared with a population average, and also found them clearer when they had a graphical indication of clinically significant differences between groups. Overall, clinicians and researchers preferred the versions with confidence intervals.
The results may not be generalizable to patients who do not have cancer or clinicians who do not treat cancer. The research team did not assess how personal characteristics affected participants’ responses to the survey.
Conclusions and Relevance
Patients, clinicians, and researchers could use these formats for PRO data displays in patient monitoring and educational materials and decision aids, and when publishing in peer-reviewed journals.
Future Research Needs
Future research could examine the effectiveness of materials using these display formats.