Inpatient Symptom Prevalence, Severity, and Improvement in Children Referred for Pediatric Palliative Care Consultation: Findings from a Multisite Quality Improvement Registry

Abstract

Objective: To describe the prevalence, severity, and changes in symptom distress in children with serious illness seen by inpatient pediatric palliative care (PPC).

Study design: Cross-sectional retrospective analysis of a multisite, inpatient PPC quality improvement dataset. We examined symptom prevalence and severity at the first PPC visit for 9 symptoms in children. For the 5 most prevalent symptoms, distress scores were dichotomized (none to mild and moderate to severe) and were analyzed for associations with patient and clinical characteristics and for changes in distress scores from first to second PPC visit and first to last PPC visit prior to hospital discharge or death.

Results: There were 1769 patient encounters between 2016 and 2022 across 5 hospitals in the dataset. Children were a median age of 5 years old (IQR 1-11). The most common diagnostic group was solid tumor and hematologic conditions (n = 716, 40.9%). Moderate to severe fatigue (n = 433, 51%), feeding issues (n = 512, 50%), dyspnea (n = 475, 41%), pain (n = 442, 37%), and anxiety (n = 308, 34%) were the 5 most prevalent symptoms. Moderate to severe symptom severity improved for all 5 symptoms (P < .001), but feeding issues persisted for nearly one-quarter of children. Notably, moderate to severe fatigue, feeding issues, and dyspnea at initial PPC assessment were associated with a higher likelihood of in-hospital death (each P < .05).

Conclusions: In this dataset, moderate to severe symptoms often improved over the course of inpatient encounters. Moderate to severe fatigue, feeding issues, and dyspnea were associated with in-hospital death, suggesting a need to screen routinely for these symptoms as potential targets for improved PPC support.

Keywords: pain; pediatrics; quality improvement; symptoms.