Palliative Care Support for Pediatric Cancer Patients Enrolled in Phase I Clinical Trials

Children diagnosed with cancer who enroll in phase I clinical trials may be exposed to greater risks beyond drug-related toxicity, such as delays in advance care planning and suboptimal end-of-life (EOL) care. Pediatric palliative care (PPC) can provide a specialized layer of support for patients enrolling in phase I trials; however, little is known about PPC utilization for pediatric phase I participants.

A retrospective chart review of pediatric oncology patients enrolled in phase I trials over a 9-year period was completed at an academic cancer hospital. Data collection included sociodemographic, clinical, PPC, and EOL-related variables. Descriptive analyses were performed.

Of the 539 included participants, central nervous system tumors were the most common diagnosis (44%, n = 237), followed by leukemias (33%, n = 179), solid tumors (20%, n = 108), and lymphomas (3%, n = 15). Two thirds of patients (68%, n = 368) had PPC support; however, only 21% (n = 76) had PPC involvement prior to trial enrollment. Patients with PPC involvement were more likely to die in their preferred location (p < 0.001), have do not resuscitate documentation (p < 0.001) and enroll in hospice (p < 0.001). More frequent PPC visits (>20 visits) increased the likelihood of death outside of the ICU (i.e., home or general inpatient floor; p < 0.001) and hospice enrollment (p = 0.0015).

Although most patients enrolled in phase I studies in this review utilized PPC, referrals were typically late in their course. Earlier and systematic PPC integration in this high-risk patient population may offer potential benefits of shared medical decision-making support and optimize EOL care through advanced planning.