Glioblastoma Patient and Caregiver Perspectives of Treatment Side-Effects and Information Provision

Abstract

Chemoradiotherapy treatment for glioblastoma causes acute and long-term toxicities, negatively impacting quality of life. Patients require evidence-based, yet understandable information regarding treatment-induced toxicities to increase preparedness for treatment. A repeat cross-sectional, qualitative design was used. Semi-structured interviews were conducted with glioblastoma patients and their caregivers at set timepoints: prior to (T1), during (T2), and post (T3) chemoradiotherapy. Interviews were recorded, transcribed verbatim, and thematically analyzed. In total, 19 patients and 12 caregivers were interviewed. Three main themes emerged. (1) Navigating information materials, (2) Lack of awareness and understanding of chemoradiotherapy-induced toxicities, (3) The actual experience and impact of chemoradiotherapy toxicities. There is a discrepancy between the treatment information materials provided and patient expectation and experience of toxicities during and after chemoradiotherapy. Current informational resources do not adequately prepare patients or caregivers for the reality of treatment-induced toxicities. Better tailored resources are needed as individual needs fluctuate across the treatment trajectory. Further cross-center investigation is required to understand how we best create a personalized information pathway for glioma patients.

Keywords: Cancer; communication; patient expectations; patient experience; patient perspectives/narratives; qualitative methods; quality improvement; quality of life.

Figure 1.

Summary of key interview questions asked at differing timepoints.

Figure 2.

Recommendations to consider implementing into clinical practice.