Glioblastoma Patient and Caregiver Perspectives of Treatment Side-Effects and Information Provision
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, qualitati...
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| Format: | Article |
| Language: | English |
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SAGE Publishing
2025-04-01
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| Series: | Journal of Patient Experience |
| Online Access: | https://doi.org/10.1177/23743735251331770 |
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| author | Sharon Fernandez BSc, PGCert, MSc Susan C Short MBBS, BSc, MRCP, FRCR, PhD Florien Boele BSc, MSc, PhD |
| author_facet | Sharon Fernandez BSc, PGCert, MSc Susan C Short MBBS, BSc, MRCP, FRCR, PhD Florien Boele BSc, MSc, PhD |
| author_sort | Sharon Fernandez BSc, PGCert, MSc |
| collection | DOAJ |
| description | 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. |
| format | Article |
| id | doaj-art-2c8e5eb7aae5427f9ca8fc4c587564a1 |
| institution | DOAJ |
| issn | 2374-3743 |
| language | English |
| publishDate | 2025-04-01 |
| publisher | SAGE Publishing |
| record_format | Article |
| series | Journal of Patient Experience |
| spelling | doaj-art-2c8e5eb7aae5427f9ca8fc4c587564a12025-08-20T03:14:19ZengSAGE PublishingJournal of Patient Experience2374-37432025-04-011210.1177/23743735251331770Glioblastoma Patient and Caregiver Perspectives of Treatment Side-Effects and Information ProvisionSharon Fernandez BSc, PGCert, MSc0Susan C Short MBBS, BSc, MRCP, FRCR, PhD1Florien Boele BSc, MSc, PhD2 Leeds Cancer Centre, , Leeds Institute of Medical Research at St. James's, University of Leeds, Leeds, UK Department of Oncology, Leeds Cancer Centre, Leeds Institute of Medical Research, University of Leeds, Leeds, UK Academic Unit of Health Economics, Leeds Institute of Health Sciences, Faculty of Medicine and Health, University of Leeds, Leeds, UKChemoradiotherapy 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.https://doi.org/10.1177/23743735251331770 |
| spellingShingle | Sharon Fernandez BSc, PGCert, MSc Susan C Short MBBS, BSc, MRCP, FRCR, PhD Florien Boele BSc, MSc, PhD Glioblastoma Patient and Caregiver Perspectives of Treatment Side-Effects and Information Provision Journal of Patient Experience |
| title | Glioblastoma Patient and Caregiver Perspectives of Treatment Side-Effects and Information Provision |
| title_full | Glioblastoma Patient and Caregiver Perspectives of Treatment Side-Effects and Information Provision |
| title_fullStr | Glioblastoma Patient and Caregiver Perspectives of Treatment Side-Effects and Information Provision |
| title_full_unstemmed | Glioblastoma Patient and Caregiver Perspectives of Treatment Side-Effects and Information Provision |
| title_short | Glioblastoma Patient and Caregiver Perspectives of Treatment Side-Effects and Information Provision |
| title_sort | glioblastoma patient and caregiver perspectives of treatment side effects and information provision |
| url | https://doi.org/10.1177/23743735251331770 |
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