The impact of clinical trial enrollment on specialty palliative care utilization in pediatric patients with high-grade gliomas.

Abstract

10057 Background: In pediatric oncology patients, palliative care has been shown to provide numerous benefits, including less intense clinical care in the last month of life, improved symptom management, and dedicated family communication. Pediatric patients with high grade glioma (HGG) represent a patient population particularly well suited for early involvement of palliative care given their high symptom burden and relatively poor prognosis. However, a recent study revealed that pediatric patients with primary malignant central nervous system (CNS) tumors missed multiple opportunities for appropriate palliative care involvement throughout their disease courses. We hypothesize that clinical trial enrollment may lead to a lack of or delay in involvement of palliative care in children and young adults with HGG. Methods: We identified a cohort of 43 deceased pediatric patients with HGG who received care at our institution. IRB exemption was obtained. For each patient, the electronic medical record was reviewed to collect patient demographics, cancer diagnoses and outcomes, clinical trial enrollment, non-clinical trial treatments, and palliative care involvement. Statistical analysis was performed comparing patients enrolled in trials to those not enrolled, employing Fisher’s exact tests for categorical data and t tests for numerical data. Results: Overall, 72% (31/43) of patients had at least one visit with a specialty palliative care provider. 56% (24/43) of patients enrolled in a clinical trial with HGG-directed therapy. 71% (17/24) of patients who enrolled in a clinical trial received specialty palliative care compared to 74% (14/19) of non-trial participants (p = 1.000). Similarly, among patients who received palliative care there was no statistically significant difference in the timing of palliative care involvement, measured from the date of first palliative care contact to date of death, for patients who enrolled in a clinical trial (mean = 177 days) compared to those who did not (mean = 113 days, p = 0.180). Of the 24 patients enrolled in clinical trials, only 7 (29%) had palliative care involvement prior to initiation of study treatment. Conclusions: As our understanding of the genomic landscape of pediatric brain tumors increases, it can be expected that patients electing to enroll in targeted therapy clinical trials will also increase. As such, it is reassuring that our data suggest that trial participation does not interfere with the receipt of specialty palliative care in children with HGG. While not statistically significant, initial palliative care involvement trends toward occurring in closer proximity to death in the patients who are not enrolled on a clinical trial. Overall, it is encouraging that in our pediatric HGG patient cohort, enrollment in clinical trials does not appear to have an adverse impact on specialty palliative care involvement.