Pediatric Home-Based Palliative Care and Hospice: Characterizing and Comparing the Populations.

Abstract

Context: Home-based palliative care (HBPC) and hospice programs offer support for children with complex life-shortening conditions. However, there is little comparison of the characteristics and care trajectories of children and young adults enrolled in HBPC versus hospice, particularly across different age groups.

Objectives: To compare the characteristics of children and young adults who received HBPC and/or hospice and identify differences and similarities between these populations.

Methods: A retrospective cohort study of children birth-21 years of age who received HBPC and/or hospice in their home between 1/2019-12/2022 at a single site. Data were manually extracted from the electronic health record. Statistical analyses included descriptive statistics, chi-square or Fisher's exacts tests for categorical variables, and Mann-Whitney U tests for non-normally distributed continuous variables. Subgroup analyses excluded children <1 year of age due to differences unique to population including utilization of perinatal palliative care or palliative care in the neonatal intensive care unit.

Results: Of 113 participants, hospice recipients were younger (median 2 vs. 7 years; P = 0.033), more likely to have an oncologic diagnosis, and had a higher mortality during the study period (69.6% vs. 22.1%; P < 0.001). HBPC participants had more hospital admissions, longer inpatient stays, and more outpatient visits. Subgroup analyses of children ≥1 year revealed diagnosis and code status differences, with hospice participants more likely to have 'allow natural death' orders and experience a code status change.

Conclusion: Among children and young adults, significant differences exist between those receiving HBPC and those receiving hospice care, particularly in age, diagnosis, and healthcare utilization.