Abstract A036: Female spouse caregivers of patients with glioblastoma want better education and communication from health care professionals regarding what to expect during the disease progression

Abstract

Abstract The purpose of this study was to understand the challenges and unmet needs of primary spousal caregivers of patients with glioblastoma multiforme (GBM) through a qualitative analysis of letters written by current and former caregivers. GBM is a devastating and terminal cancer that results in memory loss, cognitive declines, personality changes, neuropsychiatric symptoms, and physical impairments that greatly affect quality of life of both the patient with GBM and their primary caregiver, who is often a spouse or partner. Open-ended letters (n=101) written by self-identified female spouse caregivers were analyzed using reflexive thematic analysis (IRB #22-0103). The six phases of reflexive thematic analysis involved 1) data familiarization, 2) systematic data coding, 3) generation of initial themes, 4) development and reviewing themes, 5) refinement and re-naming of themes and 6) writing the report to provide insight into caregiver’s experience. Seven distinct themes were identified from the letters. Three of the themes related to the patient experiences: 1) medical details of the disease trajectory (87%), 2) interactions of the patient/caregiver dyad with health care workers (67%), and 3) the changing patient condition over time (98%). Four themes focused on the caregiver experience: 1) caregiver challenges (80%), 2) caregiver responses (77%), 3) caregiver coping strategies (85%), and description of tangible needs that would help other caregivers in the future (91%). When mapped to the four phases of the caregiving trajectory: acute disease phase, living with disease progression, end of life phase, and the bereavement phase, caregivers needed better communication and support in every phase. The highest caregiver needs were for better education about GBM from health care professionals regarding what to expect and better communication with health care providers about disease progression, treatment options, and anticipated patient, caregiver, and family needs (65%). Caregivers indicated they wanted to be listened to and included in medical decision-making. These findings on the primary caregivers’ experiences provide opportunities to guide more timely and tailored interventions to provide support and improve care for patient/caregiver dyads to help mitigate the burden of this progressive disease and improve quality of life for caregivers and their patients with GBM. Citation Format: Diana L. Coman, Megan P. Chard, Barbara J. Lutz, Laurie A. Minns. Female spouse caregivers of patients with glioblastoma want better education and communication from health care professionals regarding what to expect during the disease progression [abstract]. In: Proceedings of the AACR Special Conference on Brain Cancer; 2023 Oct 19-22; Minneapolis, Minnesota. Philadelphia (PA): AACR; Cancer Res 2024;84(5 Suppl_1):Abstract nr A036.