Introduction. Despite advances in the treatment of Neuroblastoma and increased survival rates, the needs of those patients who cannot be cured must still be addressed. One in four patients will die of disease progression. These patients present a unique set of challenges at end of life beyond those inherent to the palliation of paediatric patients. These challenges are often related to the location of the primary tumour, the location and degree of spread of distal metastases, the sequelae of treatment, and the psychosocial burden of the disease and its symptoms.
Methods. We conducted a retrospective chart review of Neuroblastoma Patients treated at the Royal Children Hospital Brisbane between 2000 and 2014. One-hundred-and-one neuroblastoma patients were diagnosed and treated during this period, 29 died of disease progression, and 8 were excluded due to incomplete records.
Results. Of the 21 included patients, 8 received palliative chemotherapy and radiotherapy, 6 received palliative chemotherapy alone, and three palliative radiotherapy alone. Eight patients were managed exclusively by the Oncology team and 13 were referred to the Palliative Care team for input on symptom management and/or end of life care. Six of these 13 patients were referred in their last two weeks of life. The most common symptoms requiring management in these patients were: pain (12), nausea and vomiting (7), constipation (5)lethargy (3), and agitation (3 ).
Conclusions. This study highlights some of the challenges in the end-of-life care of Neuroblastoma patients. A palliative approach to management is often initiated early by the oncology service even when treatment is still focused on cure. A formal transition to palliative care may occur later in the illness trajectory. Markers of such care include the provision of an afterhours telephone support number for parents and a specialised paediatric palliative care service. A better understanding of needs of these patients, and how to integrate palliative care early, is an area that could be further researched to enhance the quality of life of those patients whose disease cannot be cured.