Rita C Crooms1,2, Margaret O Johnson3,4, Heather Leeper5, Ambereen Mehta6,7, Michelle McWhirter6,8, Akanksha Sharma9. 1. Department of Neurology, Icahn School of Medicine at Mount Sinai, 1468 Madison Ave, 1052, NY, 10029, New York, USA. 2. Brookdale Department of Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai, New York, NY, USA. 3. Department of Neurosurgery, Duke University Medical Center, Trent Drive 047 Baker House, Durham, NC, 27710, USA. 4. The Preston Robert Tirsch Brain Tumor Center, Duke University Medical Center, Trent Drive 047 Baker House, NC, 27710, Durham, USA. 5. Neuro-Oncology Branch, National Institutes of Health, National Cancer Institute, 9030 Old Georgetown Rd, Bloch Bldg 82, Bethesda, MD, 20892, USA. 6. Palliative Care Program, Division of Medicine, Johns Hopkins School of Medicine, Johns Hopkins Bayview Medical Center, Baltimore, 21224, MD, USA. 7. Division of Medicine, Johns Hopkins School of Medicine, Johns Hopkins Bayview Medical Center, Baltimore, 21224, MD, USA. 8. Department of Social Work, Johns Hopkins Bayview Medical Center, Baltimore, 21224, MD, USA. 9. Department of Translational Neurosciences, Pacific Neuroscience Institute/Saint John's Cancer Institute, 2200 Santa Monica Blvd, Santa Monica, CA, 90404, USA. asharma@pacificneuro.org.
Abstract
PURPOSE OF REVIEW: High-grade gliomas (HGG) are rare brain tumors that cause disproportionate suffering and mortality. Palliative care, whose aim is to relieve the symptoms and stressors of serious illness, may benefit patients with HGG and their families. In this review, we summarize the extant literature and provide recommendations for addressing the symptom management and communication needs of brain tumor patients and their caregivers at key points in the illness trajectory: initial diagnosis; during upfront treatment; disease recurrence; end-of-life period; and after death during bereavement. RECENT FINDINGS: Patients with HGG experience highly intrusive symptoms, cognitive and functional decline, and emotional and existential distress throughout the disease course. The caregiver burden is also substantial during the patient's illness and after death. There is limited evidence to guide the palliative management of these issues. Palliative care is likely to benefit patients with HGG, yet further research is needed to optimize the delivery of palliative care in neuro-oncology.
PURPOSE OF REVIEW: High-grade gliomas (HGG) are rare brain tumors that cause disproportionate suffering and mortality. Palliative care, whose aim is to relieve the symptoms and stressors of serious illness, may benefit patients with HGG and their families. In this review, we summarize the extant literature and provide recommendations for addressing the symptom management and communication needs of brain tumor patients and their caregivers at key points in the illness trajectory: initial diagnosis; during upfront treatment; disease recurrence; end-of-life period; and after death during bereavement. RECENT FINDINGS: Patients with HGG experience highly intrusive symptoms, cognitive and functional decline, and emotional and existential distress throughout the disease course. The caregiver burden is also substantial during the patient's illness and after death. There is limited evidence to guide the palliative management of these issues. Palliative care is likely to benefit patients with HGG, yet further research is needed to optimize the delivery of palliative care in neuro-oncology.
Keywords:
Advance care planning; Advance directive; Brain tumor; End of life; Glioblastoma; Glioma; Goals of care; High-grade glioma; Metastatic disease; Neuro-oncology; Palliative care; Supportive care
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