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Published on: April 12, 2021
Pediatric Transplant Surgeons' Perspectives on Palliative Care for Children With Chronic Kidney Disease: A National
Taylor R House1, Aaron Wightman2, Jodi Smith2
1Department of Pediatrics, University of Wisconsin Madison, School of Medicine and Public Health, Madison, Wisconsin, USA.
Insights
Pediatric transplant surgeons are open to integrating palliative care (PC) for children with kidney disease. Most believe PC should be available early, not just for end-of-life care, and desire more training.
Area of Science:
- Pediatric Nephrology
- Transplant Surgery
- Palliative Care
Background:
- Palliative care (PC) integration in pediatric transplantation is not well understood.
- Adult transplant surgeons sometimes view PC as a contraindication for transplantation.
- This study explores pediatric kidney transplant surgeons' views on routine PC integration.
Purpose of the Study:
- To assess pediatric kidney transplant surgeons' perspectives on integrating palliative care for children with chronic kidney disease.
- To understand current practices and attitudes toward palliative care in pediatric kidney transplantation.
Main Methods:
- A cross-sectional web-based survey was administered to pediatric transplant surgeons.
- The survey adapted a validated instrument and included questions on PC experience, knowledge, and education.
- Data were summarized using descriptive statistics.
Main Results:
- A minority of surgeons (19%) viewed PC and kidney transplant as mutually exclusive.
- Most (86%) believed PC should not be limited to end-of-life care; 59% supported PC at diagnosis.
- Despite openness, PC consultation is rarely utilized in pediatric kidney transplant recipients.
Conclusions:
- Most pediatric transplant surgeons are receptive to palliative care engagement for pediatric kidney transplant patients.
- There is a recognized need for increased palliative care education and training among these surgeons.
Background:
Some adult transplant surgeons consider transplant to be contraindicated in patients receiving palliative care (PC). Little is known about pediatric transplant surgeons' attitudes toward PC. We sought to ascertain pediatric kidney transplant surgeons' perspectives regarding the routine integration of PC for children with chronic kidney disease.
Method:
We administered a cross-sectional web-based survey to members of the American Society of Transplant Surgeons listserv in summer 2021. We adapted the survey from the previously validated Provider Survey about Palliative Care for Children with Heart Disease and pretested it with representative kidney transplant surgeons, nephrologists, and PC physicians; queries related to PC included institutional and personal experience, knowledge, and education. Data were summarized descriptively.
Results:
There were 21 participants. Over half of the respondents were white (57%) males (62%), practicing in urban, academic centers (94%). Although 67% of the participants practiced in an institution with a subspecialty PC team, 24% were unsure if such a team existed in their institution. A minority (19%) perceived PC consultation and kidney transplant to be mutually exclusive. Most surgeons (86%) believed that PC should not be restricted to when a child is dying, and 59% reported that PC consultation should happen at diagnosis for life-threatening conditions. However, surgeons indicated that PC consultation is rarely utilized for pediatric kidney transplant recipients. Transplant surgeons expressed a desire for additional PC-focused training and willingness to engage in additional education.
Conclusions:
Although a minority of pediatric transplant surgeons perceived PC to be contraindicated for kidney transplant, most indicated openness to PC engagement for their patients.
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