LAUSR

Glioblastoma is the most common primary malignant brain tumor with a limited median overall survival time of approximately 15 months, accounting for 1%–2% of all cancer cases per year. Due to the incurable nature of the disease, treatment is not only aimed at improving survival, but also to maintain quality of life as long as possible. Decisions on the management of glioblastoma at diagnosis and throughout the course of the disease are preferably discussed in a multidisciplinary tumor board, where dedicated neuro-oncologists, neurosurgeons, medical oncologists, radiation oncologists, neuropathologists, neuroradiologists, and sometimes palliative care clinicians are involved.1 In case it is decided to start tumor-directed treatment, it usually consists of a maximally safe tumor resection or a biopsy to obtain tissue for histopathological diagnosis in case of an irresectable tumor, followed by radiotherapy and/or chemotherapy. Palliative care is provided to only a few patients from disease onset, typically those who are not able to function independently in daily life. In addition, integration of palliative care into standard neuro-oncological care is not yet routine practice in every clinic. In the Februari edition of Palliative Medicine two studies are published about patients with a glioblastoma.2 Interviewed patients with a glioblastoma, caregivers, and healthcare professionals about their experiences and preferences around glioblastoma treatment communication. They conclude that effective communication, building trusting relationships, maintaining a sense of control, and being well-informed are identified as critical by patients, caregivers, and healthcare professionals. Regarding being well-informed, they found that patients and caregivers want to be involved in decision-making, and mentioned that greater access to information makes them better able to participate in clinical decisions. They specifically require better information about the real life side-effects of antitumor treatment, supportive medication, and supportive services to make decisions. In the other paper, compared healthcare utilization and life-sustaining interventions between patients with glioblastoma who received palliative care and who did not receive palliative care, based on patients identified retrospectively from the Taiwan Cancer Registry.3 They found, amongst others that patients with glioblastoma who received palliative care had longer survival although less frequently invasive interventions were given. They also found that only about 34% of patients with glioblastoma were referred to palliative care within 1 year of death, based on claims submitted to the National Health Insurance. Both studies show the importance of palliative care for patients with a glioblastoma, as adequate treatment communication, patient and caregiver involvement in decision-making, and the availability of palliative care services do not appear to be part of standard care. We believe palliative care should be better integrated into neuro-oncological care both in terms of availability and timing. Patients with a glioblastoma are a specific patient group that suffers from both cancer and a brain disease. This is reflected in the wide range of symptoms that patients experience, including focal neurological deficits, seizures, behavioral disorders, cognitive disturbances, and fatigue. The most common symptoms are disease-specific for patients with malignant brain tumors, not occurring in patients with cancer outside the central nervous system. The combination of physical and psychosocial burdens have a profound effect on the patient and the caregiver, particularly when patients develop changes in their behavior and personality. As a consequence, caregivers usually experience high levels of distress as they face many unmet needs.4 This usually comes about when patients develop progressive disease or enter the last phase of life, when symptoms often increase in frequency as well as intensity.5 To address both patient and caregiver needs, timely implementation of palliative care is needed. Decreased neurocognitive functioning, changes in behavior, aphasia, and loss of consciousness can occur as the disease progresses, reducing patient’s medical decisionmaking capacity. Therefore, it is important that patients and caregivers are offered advance care planning early in the disease trajectory, for example shortly after diagnosis, after tumor resection, or after the first course of radiotherapy, which is approximately 3–4 months after the first diagnosis. Interestingly, patients have varying preferences regarding Palliative care and neuro-oncological care: Better integration is needed