Sign Me Up! Understanding Referral and Enrollment to Community-Based Pediatric Hospice and Palliative Care

•List the types of community-based hospice and palliative care programs for children and describe barriers and facilitators to the use of these programs.•Describe the rates of referral and enrollment to community-based programs, factors associated with referral, and describe how these findings can be used to improve access to appropriate use of community-based care. While access to community-based hospice and palliative care programs has increased for seriously ill children, we know little on a population level about which children are referred and enrolled into these programs. To describe referrals and enrollment for community-based care from a hospital-based pediatric palliative care (PPC) service, and to identify factors associated with referral. This retrospective cohort study included children with at least one PPC consult at a quaternary care pediatric hospital. Sociodemographic and clinical information, and information on referral and enrollment to home hospice (HH) or home-based palliative care (HPC) were collected. Multiple multinomial logistic regression was used to examine associations between patient-level information and referral category (HH, HPC, or no referral); no referral was the referent group. Of 302 patients, median age was 3.5 years, 75% had public insurance only, and 65% had English-speaking parents. The most common conditions were neurological (26%) and oncologic (22%). Of the 103 patients receiving at least one referral, 61 were for HH and 42 for HPC. Of them, 77% enrolled in HH and 33% enrolled in HPC. Multiple multinomial logistic regression found that children seen in the neonatal intensive care unit (NICU) had lower odds of being referred to HPC over no referral compared to those seen on a general pediatric floor (OR=0.04, p < 0.01). Patients known to the PPC team before 2017 were less likely to be referred to HH compared to newly consulted patients (OR=0.32, p < 0.01). Referrals to HH were more likely among patients new to the PPC service. There may be missed opportunities for referral to HPC among NICU patients. The low rate of HPC enrollment suggests inefficiencies in the referral/enrollment process.