Caregivers' perspective and burden of the end-of-life phase of patients with glioblastoma: a multicenter retrospective study

Abstract

Background Glioblastoma is the most common aggressive primary brain tumor in adults. Changes in cognition, personality, and behavior of patients as well as side effects of treatments cause unique challenges for providing care and may impact caregiver burden in different ways. Methods This retrospective study included 45 patients with a diagnosis of glioblastoma treated between January 2022 and June 2023 in 2 neurosurgical departments. We investigated the quality of life and the experiences of patients with glioblastoma and caregivers in the end-of-life phase using a validated questionnaire consisting of 38 questions related to the caregiver's view of the patient's terminal phase and another 26 questions regarding caregiver's experiences and emotions during the last 3 months of the patient's life. Results Fatigue, reduced consciousness, and sadness were the most common patient symptoms reported by their caregivers. The reported quality of life of caregivers was low and in accordance with the quality of life that they attributed to the patient. Symptoms of burnout and feelings of insufficient information emphasize the urgent need for psychological support and training dedicated to caregivers. Conclusions The end-of-life phases of patients with glioblastoma represent a critical factor that significantly affects not only the patient but also the caregiver's burden, caregiving tasks, and time. A multidisciplinary support program is needed to address and improve caregivers' burden.