12 years of specialized pediatric palliative inpatient care: description of patients' characteristics

Pediatric Palliative Care (PPC) patients represent a highly heterogeneous population. Depending on the specific needs of the child and their family, PPC is provided at different levels, ranging from a basic PPC approach to highly specialized PPC in tertiary care centers. However, data on patients treated in specialized inpatient PPC units remain limited. This study aimed to further characterize this patient population, focusing on diagnostic spectrum, comorbidities, device dependency, admission patterns and mortality.

A retrospective single-center study was conducted, including all patients admitted to an 8-bed specialized PPC unit at a tertiary, university-affiliated pediatric hospital in Germany between 2012 and 2023. Patient characteristics, underlying and secondary diagnoses based on the ICD-10-GM, device dependency, and admission patterns were analyzed descriptively.

N = 669 patients (mean age: 9.3; range: 0.03-33.5 years), cor-responding to N = 2,151 admissions, were analyzed. 47.7% of patients (n = 319) were readmitted at least once; the average number of inpatient stays was 3.2 (SD 4.7; range: 1-57) per patient. The mean length of stay was 12.6 days (SD 13.3; range 0-186) days. A total of 212 patients (31.7%) had diagnoses classified under chapter XVII (Congenital malformations, deformations, and chromosomal abnormalities), followed by 27.1% (n = 181) under chapter VI (Diseases of the nervous system) and 18.5% (n = 124) under chapter XVI (Certain conditions originating in the perinatal period). Nearly all patients (98.4%) had at least one secondary diagnosis, with a mean of 9.87 (range 1-23) secondary diagnoses per patient. A total of 74.6% of participants had at least one device. A total of 154 patients (23.0%) died within the observational period, and 57 (37.0%) were in the PPC unit. The mean distance between the patients' homes and the PPC unit was 69.7 (range 0-494.3) km.

PPC patients exhibit profound multimorbidity, with the complexity of their healthcare needs necessitating specialized multidisciplinary care and a high level of clinical expertise within specialized PPC structures.