Fernandez Sharon, Short Susan C, Boele Florien
Leeds Cancer Centre, Leeds Teaching Hospitals NHS Trust, 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.
J Patient Exp. 2025 Apr 10;12:23743735251331770. doi: 10.1177/23743735251331770. eCollection 2025.
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) (2) (3) 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.
胶质母细胞瘤的放化疗会导致急性和长期毒性，对生活质量产生负面影响。患者需要基于证据且易于理解的有关治疗引起的毒性的信息，以增强对治疗的准备。采用了重复横断面定性设计。在设定的时间点对胶质母细胞瘤患者及其护理人员进行了半结构化访谈：放化疗前（T1）、期间（T2）和之后（T3）。访谈进行了录音、逐字转录并进行了主题分析。总共采访了19名患者和12名护理人员。出现了三个主要主题。（1）（2）（3） 提供的治疗信息材料与患者对放化疗期间及之后毒性的期望和体验之间存在差异。当前的信息资源没有让患者或护理人员充分为治疗引起的毒性的现实做好准备。由于个体需求在整个治疗过程中会有所波动，因此需要更具针对性的资源。需要进一步进行跨中心研究，以了解如何最好地为胶质瘤患者创建个性化的信息途径。
