Assessing symptoms in pediatric palliative patients


Children receiving palliative care may suffer from a variety of symptoms. A report examines the most common ones as well as how frequent and severe they are.

Pediatric palliative care reflects a wide range of disease conditions, which represents a number of pain levels and symptoms. Effective symptom management in these patients by palliative carers has been hindered by a lack of data on the subject. A report in JAMA Network Open offers much needed information.1

Investigators collected baseline data from 7 pediatric palliative care programs across the United States from April 2017 to February 2020. The data came from a variety of settings including the hospital, outpatient care, and home care. The Memorial Symptom Assessment Scale was used to measure 20 symptoms. Parents were asked to report the symptoms. Symptoms were scored on frequency, which ranged from 0 indicates never; 1, almost never; 2, sometimes; 3, a lot; and 4, almost always, and severity, which ranged from 0 indicates none; 1, slight; 2, moderate; 3, severe; and 4, very severe, for a total symptom score.

There were 501 patients enrolled in the study, with a median age of 4.1 years. All of the patients had complex chronic conditions, with the most prevalent being gastrointestinal (357 [71.3%]), cardiovascular (310 [61.9%]), and neurologic (289 [57.7%]). A vast majority of the patients were also technology dependent. An average of 6.7 symptoms were reported by parent and 367 patients had at least 5 symptoms. The most prevalent symptoms were pain (319 [63.7%]; 95% CI, 59.4%-67.8%), lack of energy (295 [58.9%]; 95% CI, 54.5%-63.1%), irritability (280 [55.9%]; 95% CI, 51.5%-60.2%), drowsiness (247 [49.3%]; 95% CI, 44.9%-53.7%), and shortness of breath (232 [46.3%]; 95% CI, 41.9%-50.7%). Parents of older patients reported that their child had experienced more symptoms and had higher symptoms scores, but variation was found to be relatively minor. Patients who were in top 10th percentile of total symptom scores were found to have a median of 12.0 symptoms.

For patients in pediatric palliative care, polysymptomatology is common and many of these patients also experience more than 1 severe symptom. Clinicians who work with these patients should be aware of this polysymptomatology when assessing and managing the patients, to improve care outcomes.


1. Feudtner C, Nye R, Hill D 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

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