Poly-Symptomatology in Pediatric Palliative Care Patients: Baseline Evaluation of SHARE Parent-Reported Data (RP409)

Poly-Symptomatology in Pediatric Palliative Care Patients: Baseline Evaluation of SHARE Parent-Reported Data (RP409)

Feudtner C; Hays R; Friedrichsdorf S; Johnston E; Friebert S; Kang T; Wolfe J

Journal of Pain and Symptom Management

2020

symptom management; pediatric palliative care; medical complexity; Poly-Symptomatology; parental report data

Objectives: * Describe the study design of this study. * Specify the 5 most prevalent symptoms in pediatric palliative care. * Describe how symptom count, frequency, and severity contribute to poly-symptomatology. Importance: Pediatric palliative care (PPC) teams care for patients with a wide variety of conditions, often with substantial medical complexity, making symptom management challenging. Parental report data regarding the frequency and severity of symptoms in these patients has been limited. Objective(s): Characterize the prevalence, frequency, and severity of specific symptoms, as reported by parents of patients receiving PPC. Method(s): Parent-reported data were gathered from baseline questionnaires in a two-year longitudinal study being conducted at 7 children's hospitals in the Pediatric Palliative Care Research Network (PPCRN) SHARE project. Data included child's demographic and clinical characteristics, and 15 symptoms measured via the Memorial Symptom Assessment Scale, which scores symptom frequency (1, almost never; 2, sometimes; 3, a lot; 4, almost always) and severity (1, slight; 2, moderate; 3, severe; 4, very severe). Result(s): Of the 501 PPC patients thus far enrolled with completed data, 55% were male, 66% white, mean age of 7.3 years (+/-7.3 SD); the most prevalent complex chronic morbidities included neurologic (48%), cardiovascular (47%), and respiratory (34%) conditions; 72% were technology-dependent. Parents reported an average of 4.9 (+/-3.3 SD) symptoms per patient. The five most common symptoms were pain (55%; among patients with pain, mean frequency, 2.6; mean severity, 2.3), lack of energy (53%; 2.8; 2.4), irritability (47%; 2.4; 2.1), drowsiness (43%; 2.6; 2.2), and shortness of breath (39%; 2.7; 2.4). 10% of patients had markedly elevated level of symptoms (minimal frequency and severity scores of "a lot" and "severe" for each symptom), with the typical patient in this subgroup having 6 symptoms. Conclusion(s): A majority of children receiving palliative care are experiencing poly-symptomatology. An important sub-group of patients suffer frequently from numerous severe symptoms. Impact: Assessment and management of poly-symptomatology is a critical aspect of PPC. Copyright © 2020

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