Background: End-stage renal disease (ESRD) affects nearly 1400 new children each year in the United States. Morbidity and mortality rates remain high for pediatric patients with ESRD, including those that have received a renal transplant.
Objective: To better understand ESRD patients referred to palliative care, including their physical symptoms, topics discussed, and themes emerging during initial palliative care consultation.
Design/subjects: This study is a retrospective chart review of pediatric ESRD patients who received a palliative care consult. Physical symptoms, core topics, and themes were identified by the interprofessional study team.
Results: The study team found 35 patients met inclusion criteria during the study period. The most common standard palliative care metric noted was "complex or time-intensive communication and interdisciplinary social support." Pain was the most common physical symptom addressed with goals of care and communication the most common topics discussed. Themes emerging described the emotional distress of patients and parents as well as prognostic discussions.
Conclusions: This study demonstrates one institution's experience with pediatric ESRD patients undergoing consultation with the pediatric palliative care service. More research is necessary in this population to better describe the best focus for palliative care teams.
Keywords: end-stage renal disease; kidney; palliative care; pediatric palliative care; renal failure.