A cross-sectional study found that most patients receiving pediatric palliative care were experiencing polysymptomatology. These findings were published in JAMA Network Open.

Few validated studies of symptom management in pediatric patients receiving palliative care have been published. To better understand common symptoms among this patient population, data from the Pediatric Palliative Care Research Network’s Shared Data and Research (SHARE) study, sourced over 2 years at 7 hospitals in the United States, were analyzed. In the analysis, 501 patients were assessed by the Memorial Symptom Assessment Scale (MSAS) adapted for pediatric patients (PediQUEST [PQ]-MSAS) for 20 symptoms according to their parent’s perspective.

Patients were median age 4.1 years (interquartile range [IQR], 0.8-12.9) and 53.3% were boys. Racial identification as reported by the parents were 71.1% White, 15.0% Hispanic, 8.4% Black, 12.6% other/multiple race, 5.0% Native population (American Indian, Native Hawaiian, and/or Alaska Native), and 3.0% Asian. Health insurance coverage was 40.9% government-issued insurance, 30.7% private insurance, 26.2% both government and private, 1.0% no insurance, and 1.2% chose not to disclose or had an unspecified other form of insurance.

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Palliative care was administered for an average of 1 year (range, 1 day to 14.6 years) for gastrointestinal (71.3%), cardiovascular (61.9%), and neurologic (57.7%) conditions.

Patients had an average of 6.7±3.4 symptoms, total symptom scores of 19.6±11.7, and 73.3% reported 5 or more symptoms. The most common symptoms were pain (63.7%), lack of energy (58.9%), irritability (55.9%), drowsiness (49.3%), and shortness of breath (46.3%).

Stratified by condition, no significant difference in the number of symptoms were observed. For number of chronic conditions, patients with fewer conditions tended to report fewer symptoms.

This study may have been limited by the reliance on parent-reported and not patient-reported symptoms; however, many patients were nonverbal.

These data indicated that most pediatric patients receiving palliative care experience a wide range of symptoms emphasizing the need for more comprehensive review of symptomatology.


Feudtner C, Nye R, Hill DL, et al. Polysymptomatology in Pediatric Patients Receiving Palliative Care: Based on Parent-Reported Data. JAMA Netw Open. 2021;4(8):e2119730. doi:10.1001/jamanetworkopen.2021.19730