Abstract B043: The caregiver burden of patients with Glioblastoma multiforme (GBM) and feeling of regret for treatment decisions associated with GBM standard of care using qualitative analysis

Abstract

Abstract The purpose of this study was to identify areas where caregivers of patients with Glioblastoma multiforme (GBM) experienced feelings of regret in association to the treatment decisions related to standard of care. The standard of care for GBM consists of maximal surgical resection, chemotherapy, and radiation. This often leads to physical, cognitive, and physiological deficits. Due to the rapid onset and disease progression, patients and their caregivers must quickly make medical decisions regarding whether to pursue treatment and to what extent to continue treatment. The study sample included 101 letters written by female caregivers belonging to a Facebook group, “We are the wives of GBM and this is our story.” Members of the Facebook group were recruited to write letters to GBM healthcare providers describing their experiences as caregivers for spouses/partners of patients with GBM. This study was a secondary analysis of the narratives in the letters (UNCW IRB 22-0103) focusing on treatment decision-making. The research approach used in this study was Reflexive Thematic Analysis using NVivo qualitative data management software. Team members individually and collaboratively completed the six phases of reflexive thematic analysis: 1) data familiarization, 2) systematic data coding, 3) generating initial themes, 4) developing and reviewing themes, 5) refining and naming themes, and 6) writing the report to provide insight into study participants’ experiences. Six main themes were identified: 1) communication with different providers, 2) disease trajectory communication, 3) involvement with palliative care, 4) reliance on peer-to-peer communication, 5) description of side effects, 6) reflection on treatment decisions. Of 101 letters analyzed, 7 caregiver/patient dyads decided against treatment and 10 caregivers expressed regret in pursuing treatment. Nearly 40% of the letters indicated struggles by caregivers when communicating with health care team members about the disease, treatments, and their anticipated side effects. Nineteen caregivers relied on information from other caregivers (peer-to-peer communication) likely due to difficulties in getting information directly from health care providers. When describing care teams, only 20% of the letters mentioned palliative care as part of care teams. These caregivers struggled to obtain proper disease trajectory information, information about side effects of treatment options, and expressed patterns of miscommunication or low communication with providers. The lack information by providers about the GBM disease trajectory, its impacts on the patient and their families, and the fact that caregivers relied on peer-peer communication suggests the caregivers did not receive adequate information about the GBM disease trajectory and progression from their health care team which limited their understanding. This data suggests caregivers may have advocated for different treatment decisions and options if they had received adequate information from the health care team. Citation Format: Marlee S. Wallace, Megan P. Chard, Elizabeth A. James, Barbara J. Lutz, Laurie A. Minns. The caregiver burden of patients with Glioblastoma multiforme (GBM) and feeling of regret for treatment decisions associated with GBM standard of care using qualitative analysis [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 B043.