Objective: To investigate cancer patients' understanding of graphical presentations of longitudinal EORTC QLQ-C30 scores.
Methods: We conducted semi-structured interviews with brain tumour patients participating in routine patient-reported outcome (PRO) monitoring. We assessed understanding of longitudinal quality of life (QOL) profiles, presented as bar charts objectively and with self-ratings. In addition, patients' opinions on congruency of the QOL scores with their self-perceived health status were evaluated.
Results: We recruited 40 brain tumour patients (57.5% female; mean age 52.7, SD 13.7). In total, 90% of patients rated the graphs as easy to understand. Accordingly, almost all questions on assessing understanding objectively were answered correctly by at least 80% of the patients. More than 95% indicated that the displayed QOL scores matched their personal perception of symptom burden and functional health in the observed period.
Conclusion: Patients are able to understand their QOL results when presented graphically and are able to interpret important changes. Displayed QOL scores obtained with the EORTC QLQ-C30 are consistent with the patients' personal perception of physical and emotional functioning, pain and fatigue.
Practice implications: Knowledge about patients' understanding of graphically displayed QOL results contributes to creation of optimal evidence-based feedback on the patients' present QOL and its trajectory.
Keywords: Cancer; EORTC QLQ-C30; Graphic display of data; Patient-centred care; Patient-reported outcomes; Quality of life.
Copyright © 2016 The Author(s). Published by Elsevier Ireland Ltd.. All rights reserved.