P0548 - Integration of Palliative Care into Pediatric Brain Tumor Population: Assessing Patient and Family Perspectives on Palliative Care

Background: Pediatric oncology is a field of medicine that requires complex treatment approaches and multidisciplinary care. While historically used interchangeably with hospice care, palliative care offers an additional layer of support and benefit to the patients and their families that is not exclusive to end-of-life treatment. Despite prognosis, there is evidence that early integration of palliative care services leads to improved quality of life and symptom management. Currently, the Melodies Center for Childhood Cancer and Blood Disorders at Albany Medical Center does not have an established protocol for integration of palliative care services in the pediatric oncology population. Utilizing the Journey’s Palliative Care team, integration of palliative care services will begin at initial diagnosis in all pediatric brain tumor patients. The purpose of this quality improvement study is to assess patient and family perceptions of palliative care and assess impact of palliative care on quality of life. We hypothesize that the early integration of palliative care services will result in increased quality of life for patients due to increased symptom identification and management.

Methodology: The study includes brain tumor patients, age 0-21, newly diagnosed or currently undergoing treatment. Subjects are selected by the Pediatric Neurooncolgy team and Journeys Palliative care team, based on assessment during regularly scheduled visits and a diagnosis of high risk malignant brain tumor, including anaplastic astrocytoma, glioblastoma, medulloblastoma, anaplastic ependymoma, atypical teratoid rhabdoid tumor, and brain stem glioma. A 10-minute survey will be administered to assess patient perceptions of palliative care, and symptoms management; rating prevalence and severity. The survey will be administered at 4-month intervals (months 0, 4, 8, and 12).

Discussion: To date, we have enrolled 5 patients. The majority of surveys have been completed by parents. 80% respondents had heard of the term palliative care prior to study enrollment The majority associated palliative care with quality of life, comfort care, symptom management and emotional support; however, 2 respondents associated palliative care with end of life, hospice, and discontinuation of treatment. Nausea/vomiting was the most common symptom identified. We have identified 6 additional patients to enroll in this study.

Conclusion: Further patient data is needed to understand the potential benefits of palliative care integration in the pediatric brain tumor population at our institution. Based on the preliminary data, patients do not necessary associate palliative care with end-of-life care, which may be advantageous in integrating palliative care services. Additionally, nausea/vomiting was identified as the most common symptom, which provides room for intervention in symptom management to improve quality of life.