Key Points:
Pediatric nephrology fellows have limited primary palliative exposure and opportunities to develop and refine primary palliative care (PC) skills.
While experiential practice seems to improve confidence, most fellows have low confidence to provide primary PC.
Fellows indicate a need and desire for additional PC training during nephrology fellowship.
Background: Children with CKD and their families encounter significant burdens. Integrating primary palliative care (PC), holistic care provided by nephrologists focused on enhancing quality of life through symptom management, stress relief, and high-quality serious illness communication, provides an opportunity to promote flourishing. Incorporation of primary PC education in training is therefore recommended. Yet, adult nephrology fellows report inadequate preparation to deliver primary PC. Similar experience of pediatric nephrology fellows is unknown. We sought to describe pediatric nephrology fellows' experience in providing primary PC and PC exposure during training.
Methods: We administered a cross-sectional web-based survey to pediatric nephrology fellows associated with the American Society of Pediatric Nephrology listserv in May 2021. The survey was adapted from a previously validated instrument and pretested by stakeholder nephrologists and subspecialty PC physicians; queries included institutional and personal PC experience, training, and confidence in primary PC delivery. Data were summarized descriptively.
Results: Response rate was 32% (32/101). Respondents were 81% female and 50% White; 87% practiced in an urban setting. Only one fellow (3%) completed a PC rotation during fellowship, and 15 respondents (48%) completed a rotation in medical school or residency. Fellows reported substantially more practice conducting kidney biopsies than family meetings; 68% of fellows had performed >10 kidney biopsies, and 3% of fellows had led >10 family meetings. Confidence in navigating challenging communication, addressing psychological distress, or managing physical symptoms associated with CKD was generally low. Fellows with greater exposure to family meetings reported more confidence navigating challenging communication. Fellows endorsed a need for additional training; 97% indicated that training should happen during fellowship.
Conclusions: Few pediatric nephrology fellows receive PC education or exposure during training, resulting in low rates of knowledge and confidence in primary PC delivery. Fellows indicate a need and desire for improved PC training.