Pediatric Neuropalliative Medicine Clinic: Five-Year Data Characterizing a Novel Model of Outpatient Care

Pediatric neuropalliative medicine (PNPM) is a recently developed area of subspecialty neurology practice focused on supporting the complex emotional, psychological, and physical aspects of caring for a child with serious neurological disease. This study aims to characterize the establishment and inaugural 5 years of an academic, consultative pediatric neuropalliative medicine (PNPM) clinic at a large, quaternary care children's hospital in the US.

Descriptive statistics were used to characterize the population seen in this clinic and to analyze outcomes.

Over 5 years, 250 patients were seen, totaling 682 clinic visits. Primary diagnoses of patients included epileptic encephalopathy (30%), acquired brain injury (24%), and neuromuscular diseases (16%); 64% of patients had a confirmed genetic condition. The most common referral sources included child neurology (33%) and rehabilitation medicine (20%). Referral to this clinic was the first contact with palliative medicine for 82% of patients. In PNPM clinic, all families participated in facilitated narrative debriefing of their prior experiences related to serious illness. Future decision-making considerations were highlighted, including initiation of life-sustaining medical technology and emergency management including code status. Of the 51 patients (20%) who died within the study period, 90% had code status discussions in the clinic and 89% died in a supportive setting, including home hospice or inpatient care.

PNPM clinic promotes tailored and proactive decision-making support for families affected by serious neurological illnesses. All patients had health fragility and some of them died in childhood, though the majority of the cohort remained alive beyond the study period.