Abstract
Purpose To investigate patients’ and health professionals’ understanding of and preferences for different graphical presentation styles for individual-level EORTC QLQ-C30 scores.MethodsWe recruited cancer patients (any treatment and diagnosis) in four European countries and health professionals in the Netherlands. Using a questionnaire, we assessed objective and self-rated understanding of QLQ-C30 scores and preferences for five presentation styles (bar and line charts, with or without color coding, and a heat map).ResultsIn total, 548 patients and 227 health professionals participated. Eighty-three percent of patients and 85 % of professionals self-rated the graphs as very or quite easy to understand; this did not differ between graphical presentation styles. The mean percentage of correct answers to questions objectively assessing understanding was 59 % in patients, 78 % in medical specialists, and 74 % in other health professionals. Objective understanding did not differ between graphical formats in patients. For non-colored charts, 49.8 % of patients did not have a preference. Colored bar charts (39 %) were preferred over heat maps (20 %) and colored line charts (12 %). Medical specialists preferred heat maps (46 %) followed by non-colored bar charts (19 %), whereas these charts were equally valued by other health professionals (both 32 %).ConclusionThe substantial discrepancy between participants’ high self-rated and relatively low objective understanding of graphical presentation of PRO results highlights the need to provide sufficient guidance when presenting such results. It may be appropriate to adapt the presentation of PRO results to individual preferences. This could be facilitated when PROs are administered and presented to patients and health professionals electronically.
Highlights
Patient-reported outcomes (PROs) are frequently used as outcome measures in cancer clinical trials and in observational studies
Three-quarter of the patients were on active treatment at the time they completed the questionnaire
Within the group of health professionals, we found that medical specialists were better in interpreting absolute scores than nurses and other health professionals, possibly because medical specialists are more accustomed to interpreting numerical data and charts
Summary
Patient-reported outcomes (PROs) are frequently used as outcome measures in cancer clinical trials and in observational studies They have been introduced into daily clinical practice, where they provide clinicians and nurses with information about the symptom experience, functional health, and subjective well-being of patients that can be used during the clinical encounter. This feedback from PROs often leads to improved symptom detection [1,2,3], more discussion of problems [1,2,3], and higher levels of patient satisfaction [2], only a few studies have found a direct impact on quality of life (QoL) [4, 5]. Graphs are especially useful for the display of dynamic data, such as change over time [7]
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