ASN's Mission

To create a world without kidney diseases, the ASN Alliance for Kidney Health elevates care by educating and informing, driving breakthroughs and innovation, and advocating for policies that create transformative changes in kidney medicine throughout the world.

learn more

Contact ASN

1401 H St, NW, Ste 900, Washington, DC 20005

email@asn-online.org

202-640-4660

The Latest on X

Kidney Week

Please note that you are viewing an archived section from 2021 and some content may be unavailable. To unlock all content for 2021, please visit the archives.

Abstract: PO2009

Pediatric Nephrologists' Perspectives on Palliative Care: A National Survey Study

Session Information

Category: Pediatric Nephrology

  • 1700 Pediatric Nephrology

Authors

  • House, Taylor R., University of Washington, Seattle, Washington, United States
  • Wightman, Aaron G., University of Washington, Seattle, Washington, United States
  • Smith, Jodi M., University of Washington, Seattle, Washington, United States
  • Rosenberg, Abby R., University of Washington, Seattle, Washington, United States
Background

Integration of palliative care (PC) within nephrology practice offers the chance to lessen the burdens experienced by children with chronic kidney disease (CKD) and their families. Yet, little is known about pediatric nephrologists’ attitudes regarding engaging in and seeking PC services for children with CKD. We sought to ascertain pediatric nephrologists’ perspectives in routine integration of PC for children with CKD.

Methods

A cross-sectional web-based survey was administered to pediatric nephrologists associated with the American Society of Pediatric Nephrology listserv. Three invitations were sent from May 3, 2021 to May 28, 2021. The survey was adapted from a previously validated instrument and pretested by stakeholders; studied areas included institutional and personal experience with PC, training and education, and physician confidence. Data were summarized descriptively.

Results

There were 64 participants (17.7% response rate). Most participants were female (62.5%), Caucasian (64.1%), and practice in urban (76.4%), academic centers (89.1%) with access to subspecialty PC teams (93.8%). Perceived institutional barriers to subspecialty PC consultations were low, and prior consultations were found to be helpful. However, nephrologists expressed concern that consultation may imply to parents that the team is “giving up” on their child. Though 63.6% indicated that consultation should happen at diagnosis for life threatening conditions where cure is feasible but may fail, 59.6% of nephrologists reported that PC is rarely or never consulted for ESKD patients at their center. Confidence in engaging in challenging communication was high, yet only 26.4% and 30.2% of participants, respectively, were comfortable managing pain or psychological distress of children with CKD.

Conclusion

Pediatric nephrologists are receptive to PC consultations for children with CKD, but utilization is low. Parental perception of the implications of consultation are of concern. Among primary PC skills, challenging communication is seen as a strength of pediatric nephrologists, but confidence is low in managing some physical and psychological symptoms. Routine integration of PC will require efforts to assess patient and family impressions of PC and shift that of providers, as well as targeted education to increase skills.

Funding

  • Other NIH Support