516 - Provider perceptions of palliative care utilization in rapid Whole Genome Sequencing

Poster Number: 516
Publication Number: 516.140

Carrie Torr, University of Utah School of Medicine, Salt Lake City, UT, United States; Luca Brunelli, University of Utah School of Medicine, Salt Lake City, UT, United States; Rachel Palmquist, University of Utah School of Medicine, Salt Lake City, UT, United States; Sabrina Malone Jenkins, University of Utah, Salt Lake City, UT, United States; Joshua Bonkowsky, University of Utah; Primary Children's Hospital, Salt Lake City, UT, United States; Ryann Bierer, University of Utah, Salt Lake City, UT, United States

Background: Genetic conditions are a leading cause of pediatric morbidity and mortality. As rapid whole genome sequencing (rGS) becomes more widely available to critically ill pediatric patients there is uncertainty on how results may influence provider utilization of palliative care (PC) teams. PC teams provide longitudinal psychosocial support for families of critically ill patients, including interpreting complex medical information and navigating medical decision-making based on their values and goals of care. While not the same as hospice, PC teams are often consulted when patients and parents are facing end-of-life decisions.
 

Objective: Assess attending physician perceptions on the timing of PC referral and subsequent outcomes of critically ill children diagnosed with a genetic condition by rGS.

Design/Methods: Attending physicians were surveyed about changes in clinical care after the return of rGS results at Primary Children’s Hospital and the University of Utah NICU. Patients identified as having a PC consult secondary to rGS results were included.  Charts were reviewed for patients' age at the time of rGS, PC notes, discussions on goals of care, documentation of rGS effect on care decisions, and long-term outcomes.  The study is IRB-approved.

Results: 114 surveys were reviewed. 10 providers (9%) identified a PC consult as a clinical change after the return of rGS results. Of the 10 patients identified only 8 had orders for PC consults,  7 were completed (one family declined PC). Five PC consults (71%) were initiated prior to return of results; the PC consult occurred on average 4 days prior to the return of rGS.  Six patients (86%) with PC consults died within 7 days (median, range 3-26d) of return of rGS . Provider comments were also surveyed and analyzed.Conclusion(s): PC consults were initiated prior to return of rGS results in the majority of cases, suggesting that the clinical presentation including critical condition of the patients was the driving factor for PC consult. The rGS results were incorporated into shared medical decision-making, but the results themselves did not lead to PC consult. We are also evaluating family perception of the return of rGS results.