Symptom Trajectories and Mortality Among Children Receiving Palliative Care: A Prospective Cohort Study

Symptom Trajectories and Mortality Among Children Receiving Palliative Care: A Prospective Cohort Study

Feudtner C; Boyden JY; Hill DL; Hinds P; Johnston E; Friebert S; Bogetz J; Kang TI; Hall M; Nye R; Wolfe J

Journal of Pain and Symptom Management

2024

child; adult; cohort analysis; controlled study; female; human; male; palliative therapy; pain; ethnicity; adolescent; conference abstract; pediatric patient; symptom; mortality; biological marker

Outcomes: 1. Describe two major patterns of symptom trajectories over time among children receiving palliative care services. 2. Identify three clinical and research implications of the two major symptom trajectory patterns observed in pediatric palliative care. Key Message: Patients receiving pediatric palliative care services, broadly speaking, experience either persistent or declining levels of symptoms over the course of months-to-years of time, with the latter pattern associated with greater than 50% mortality. These findings provide prognostic information and prompt redoubled attention to improving symptom management regarding persistently elevated symptoms. Importance: A foundational goal of pediatric palliative care (PPC) is to relieve patient suffering attributable to various symptoms that occur during serious illness. While pediatric patients receiving PPC are known to experience often high levels of polysymptomatology, much less is known about how symptom levels change over time and how they relate to mortality. Objective(s): Identify patterns of symptom trajectories and association with mortality among patients receiving pediatric palliative care. Scientific Methods Utilized: 2-year cohort study of patients, birth to 30 years of age, receiving PPC services from 7 PPC programs across the United States with data collected at 0, 2, 6, 12, 18, and 24 months from 2017 to 2022. We identified latent group trajectories of total symptom score of 20 symptoms over time. Result(s): Two symptom score trajectories were identified in this cohort of 603 patients. Just less than half (n= 287, 47.6%) demonstrated a "persistent" symptom trajectory. While individual patients in this group had symptoms scores that fluctuated up and down one measure to the next, their scores over months-to-years persisted in a stable range. By contrast, the other group (n= 316, 52.4%) demonstrated a "declining" symptom trajectory. Patients in this group initially had higher overall symptom scores that, while fluctuating, declined substantially over time. Patient age, conditions, race, and ethnicity were not associated with these patterns, but mortality was. While 8.4% of the persistent trajectory group died during the study period, more than half (52.4%) of the declining trajectory group died. Conclusion(s): Most but not all patients receiving PPC experience declining levels of symptoms over months-to-years, a pattern associated with high mortality; the remainder experience fluctuating but stably persistent symptom levels with much lower mortality. Impact: These findings provide prognostic information and prompt redoubled attention to improving symptom management regarding persistently elevated symptoms. Keywords: Pediatrics/Pain and symptom controlCopyright © 2024

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