Cancer patients' understanding of longitudinal EORTC QLQ-C30 scores presented as bar charts

F L Loth; B Holzner; M Sztankay; H R Bliem; S Raoufi; G Rumpold; J M Giesinger

doi:10.1016/j.pec.2016.08.004

Cancer patients' understanding of longitudinal EORTC QLQ-C30 scores presented as bar charts

Patient Educ Couns. 2016 Dec;99(12):2012-2017. doi: 10.1016/j.pec.2016.08.004. Epub 2016 Aug 2.

Authors

F L Loth¹, B Holzner², M Sztankay³, H R Bliem⁴, S Raoufi⁵, G Rumpold⁶, J M Giesinger⁷

Affiliations

¹ Medical University of Innsbruck, Department of Psychiatry, Psychotherapy and Psychosomatics, Innsbruck, Austria; Leopold-Franzens-University of Innsbruck, Institute of Psychology, Innsbruck,Austria. Electronic address: [email protected].
² Medical University of Innsbruck, Department of Psychiatry, Psychotherapy and Psychosomatics, Innsbruck, Austria. Electronic address: [email protected].
³ Medical University of Innsbruck, Department of Psychiatry, Psychotherapy and Psychosomatics, Innsbruck, Austria; Leopold-Franzens-University of Innsbruck, Institute of Psychology, Innsbruck,Austria. Electronic address: [email protected].
⁴ Leopold-Franzens-University of Innsbruck, Institute of Psychology, Innsbruck,Austria. Electronic address: [email protected].
⁵ Institute of Psychology, Leopold-Franzens-University of Innsbruck, Institute of Psychology, Innsbruck, Austria. Electronic address: [email protected].
⁶ Medical University of Innsbruck, Department of Medical Psychology, Innsbruck, Austria. Electronic address: [email protected].
⁷ Medical University of Innsbruck, Department of Psychiatry, Psychotherapy and Psychosomatics, Innsbruck, Austria. Electronic address: [email protected].

PMID: 27506581
DOI: 10.1016/j.pec.2016.08.004

Abstract

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.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Adolescent
Adult
Aged
Aged, 80 and over
Brain Neoplasms / psychology*
Comprehension*
Computer Graphics*
Fatigue
Female
Health Literacy*
Humans
Interviews as Topic
Longitudinal Studies
Male
Middle Aged
Patient Reported Outcome Measures
Qualitative Research
Quality of Life*
Surveys and Questionnaires