We used SPSS software 15.0 for statistical analysis. Symptoms and problems arising in the week before death were recorded separately. Symptoms, signs, and treatment in the end-of-life phase as a whole were retrieved from medical files and the chart of the clinical neuro-oncology nurse specialist. 1).Ĭhecklist used in the telephone interviews.įurthermore, in the month following death, the course of the disease in the last week before dying was enquired after with the family or the primary care physician. In these telephone contacts, using a checklist, the clinical nurse specialist investigated the occurrence of pain, headache, focal neurological deficits, confusion, cognitive disturbances, seizures, and incontinence, as well as the level of consciousness, changes in medication (antiepileptics and steroids), and problems with intake of medication, fluid, and food (Fig. Otherwise, the clinical nurse specialist contacted the patients and/or their main informal caregiver(s) on a biweekly basis and asked for signs, symptoms, and problems encountered. Patients and caregivers were invited to call the clinical nurse specialist in the case of questions and problems. The clinical nurse specialist, however, kept in touch with the patients and/or their families via a telephone service. In the end-of-life phase, patients no longer visited the outpatient clinic on a regular basis. Patients who died during tumor treatment were therefore excluded. According to our definition, the end-of-life phase started once patients presented with progressive disease for which there were no further tumor treatment options, or if patients refused further tumor treatment. Patients with either an initial histological diagnosis of HGG (glioblastoma multiforme, high-grade astrocytoma, high-grade oligodendroglioma, or high-grade mixed glioma) or a histological confirmed low-grade glioma (LGG), with clinical and radiological progression suspected for a high-grade tumor following initial treatment, were included. Despite aggressive multimodality treatment with surgery, radiation therapy, and chemotherapy, median survival ranges from 18 years of age) glioma patients, who had died between January 2005 and August 2008 after being treated for their tumor at the VU University Medical Centre, Amsterdam, were considered for inclusion in the analysis. Patients with high-grade glioma (HGG), the most frequently occurring primary malignant brain tumor, have a poor prognosis and cannot be cured. Further research is needed in order to develop specific palliative care guidelines for these patients. Our study demonstrates that HGG patients, unlike the general cancer population, have specific symptoms in the end-of-life phase. Other common symptoms reported in the end-of-life phase are progressive neurological deficits, incontinence, progressive cognitive deficits, and headache. Seizures occurred in nearly half of the patients in the end-of-life phase and more specifically in one-third of the patients in the week before dying. The majority of the patients experienced loss of consciousness and difficulty with swallowing, often arising in the week before death. She systematically asked for signs and symptoms. The clinical nurse specialist in neuro-oncology maintained contact on a regular basis with (relatives of) HGG patients once tumor treatment for recurrence was no longer given. We retrospectively examined the files of 55 patients who received treatment in our outpatient clinic and died between January 2005 and August 2008. The purpose of this study was to explore specific problems and needs experienced in the end-of-life phase of patients with HGG. This end-of-life phase has not been studied adequately yet. When the patient's condition declines and no further tumor treatment seems realistic, patients in the Netherlands are often referred to a primary care physician for end-of-life care. Therefore, the aim of treatment is not only to prolong life, but also to prevent deterioration of health-related quality of life as much as possible. Despite multimodal treatment, it is not possible to cure high-grade glioma (HGG) patients.
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