End-of-Life Care in Pediatric Neuro-Oncology

INTRODUCTION Central nervous system (CNS) tumors account for roughly 25% of all pediatric neoplasms [1]. Prognosis depends on the tumor site, chemo-and radiosensitivity, surgical radicality, presence of metastases, and the patient's age. Despite improvements in treatment, the outcome for some patients remains dismal: 5 year overall mortality in Europe is estimated at around 35% Children with CNS tumors who relapse or go through disease progression have to cope with unique problems that are not normally present in most other patients, such as focal neurological deficits, paralysis, cognitive deterioration, behavioral alterations, dysphagia, dysarthria, and dysphasia. Such symptoms strongly affect quality of life even in the absence of pain and dyspnea. Literature specifically concerning end-of-life (EOL) care in children with CNS cancer is very limited. One of the most relevant studies was published by a Canadian group In our paper, we analyze the major issues in EOL care in children with CNS tumors treated at our Center. METHODS Clinical data were collected retrospectively for all children and adolescents with a diagnosis of CNS cancer, who were followed-up at the "Regina Margherita" Children's Hospital in Turin (Italy) and who died between January 2005 and December 2011. We excluded cases which were followed-up elsewhere and came to our center only for surgery or for an oncology consultation. We excluded one patient with a brain tumor who developed a myelodysplastic syndrome and died as a result of hematological progression. A total of 39 patients were included in this study. Master data, the date of start-therapy and stop-therapy, the date of diagnosis, relapse and death were obtained from our hospital database. The spreadsheet resulting from the database query was complemented by clinical data about symptoms, neurological impairment, medications, psychological issues, pain, etc., that were obtained from patients' digital or paper records archived at our institution. When patients received part of their EOL care in other hospitals, physicians from such institutions were contacted by our center in order to obtain updated clinical data. For patients who received much of their EOL care at home, the parents communicated by phone any relevant clinical change. Nonetheless, the collection of precise information depends mainly on the family's compliance. Data are complete in 25-39 patients. The incomplete data relate Background. The management of children with cancer during the end-of-life (EOL) period is often difficult and requires skilled medical professionals. Patients with tumors of the central nervous system (CNS) with relapse or disease progression might have additional needs because of the presence of unique issues, such as neurological impairment and altered consciousness. Very few reports specifically concerning the EOL period in pediatric neuro-oncology are available. Procedure. Among all patients followed at our center during the EOL, we retrospectively analyzed data from 39 children and adolescents with brain tumors, in order to point out on their peculiar needs. Results. Patients were followed-up for a median time of 20.1 months. Eighty-two percent were receiving only palliative therapy before death. Almost half the patients (44%) died at home, while 56% died in a hospital. Palliative sedation with midazolam wa