Mapping Surgical Intervention Trajectories in Seriously Ill Children Receiving Palliative Care

Despite the prevalence of surgical intervention in seriously ill children, data is scarce regarding interventions performed based on type of serious illness. We therefore sought to evaluate the surgical interventions performed from the time of serious illness diagnosis to the present in a cohort of children receiving palliative care, including identification of the surgical specialists involved in these procedures.

We conducted a retrospective cohort analysis of surgical interventions in 197 children enrolled in a multicenter prospective cohort study (Pediatric Palliative Care Research Network SHARE Study). All surgical interventions were abstracted via clinical record review.

189 (of 197, 96%) patients (45% female) with an average of 5.3 complex, chronic conditions (CCC) underwent 3331 surgical interventions (median = 13) by 21 specialist teams (most commonly general surgeons). Those with hematologic malignancies underwent intervention most frequently, followed by children with respiratory, genetic/metabolic, and gastrointestinal/genitourinary (GI/GU) diagnoses. Children with cardiovascular disease, malignancies, and prematurity had the shortest time between diagnosis and first intervention and between diagnosis and pediatric palliative care (PPC) services. By contrast, those with genetic, neurologic, and respiratory diagnoses had significantly longer intervals between diagnosis and intervention.

Nearly all seriously ill children receiving PPC undergo surgical intervention, and many undergo tens of interventions by a variety of subspecialist teams. Surgical intervention differs by serious illness type, with children with more acutely life-limiting illnesses undergoing high-volume, high-risk interventions in the immediate post-diagnosis period. Those with chronic, life-limiting illnesses undergo a higher lifetime volume of interventions that are relatively lower risk and more evenly distributed over time.

N/A.