Integrating Palliative Care in Phase 1 Pediatric Oncology Trials: Parent Perspectives

Early-Phase clinical trials in pediatric oncology are designed to test drug safety and feasibility, offering minimal direct therapeutic benefit (5%-10%) while carrying a risk of toxicity, death, and worsened symptom burden. Pediatric palliative care (PPC) provides supportive care to patients and families enrolling in Phase 1 trials; however, oncologists inconsistently refer patients for PPC. This study aimed to explore potential benefits and ideal timepoints for integrating PPC for pediatric oncology patients participating in Phase 1 trials.

Semi-Structured qualitative interviews were conducted with parents of patients enrolling in Phase 1 trials at two academic cancer centers. Interviews were audio-recorded, transcribed, and analyzed using inductive content analysis.

Parents of 31 patients were interviewed. Approximately 61% of parents (n = 19) were familiar with PPC, of whom a majority (68%, n = 13) defined PPC to mean end-of-life/hospice. Fewer than one third (30%, n = 9) described the evolution of this definition to include comfort, quality of life, and extra support. Most parents (97%, n = 30) supported early integration of PPC, with 87% (n = 27) identifying enrollment on a Phase 1 study as an ideal timepoint for PPC referral. Parents described PPC as helpful with symptom management, care coordination, and general support and advocated for clinicians to introduce PPC by emphasizing these benefits.

Parents identified enrollment in a Phase 1 study as an ideal timepoint for PPC referral, highlighting benefits from PPC subspecialty support. Future research will assess the impact of the implementation of clinical interventions to promote PPC consultation in pediatric cancer Phase 1 trial populations.