Department of Pediatrics, University of Wisconsin Madison, School of Medicine and Public Health, Madison, Wisconsin.
Department of Pediatrics, University of Washington, Seattle Children's Hospital, Seattle, Washington.
Kidney360. 2023 Oct 1;4(10):1437-1444. doi: 10.34067/KID.0000000000000233. Epub 2023 Aug 2.
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.
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.
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.
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.
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.
儿科肾脏病学研究员对初级姑息治疗的接触和机会有限，无法发展和完善初级姑息治疗（PC）技能。虽然经验实践似乎可以提高信心，但大多数研究员对提供初级 PC 的信心较低。研究员表示在肾脏病学研究员期间需要和希望接受额外的 PC 培训。
患有 CKD 的儿童及其家庭面临着巨大的负担。整合初级姑息治疗（PC），即肾脏病学家提供的整体护理，侧重于通过症状管理、减轻压力和高质量的严重疾病沟通来提高生活质量，为促进繁荣提供了机会。因此，建议在培训中纳入初级 PC 教育。然而，成人肾脏病学研究员报告说他们没有准备好提供初级 PC。儿科肾脏病学研究员的类似经历尚不清楚。我们试图描述儿科肾脏病学研究员在培训期间提供初级 PC 和 PC 接触的经验。
我们于 2021 年 5 月向美国儿科学肾脏病学会名单服务的儿科肾脏病学研究员发送了一份基于网络的横断面调查。该调查改编自先前经过验证的工具，并由利益相关者肾脏病学家和专科 PC 医生进行了预测试；查询包括机构和个人 PC 经验、培训以及在提供初级 PC 方面的信心。数据以描述性方式进行总结。
回复率为 32%（32/101）。受访者中 81%为女性，50%为白人；87%在城市环境中工作。只有一名研究员（3%）在研究员期间完成了 PC 轮转，15 名受访者（48%）在医学院或住院医师期间完成了轮转。研究员报告说，他们进行肾脏活检的实践远远超过家庭会议；68%的研究员进行了>10 次肾脏活检，3%的研究员进行了>10 次家庭会议。在导航具有挑战性的沟通、解决心理困扰或管理与 CKD 相关的身体症状方面，信心普遍较低。更多接触家庭会议的研究员报告说，在导航具有挑战性的沟通方面更有信心。研究员赞成需要额外的培训；97%的人表示培训应该在研究员期间进行。
很少有儿科肾脏病学研究员在培训期间接受 PC 教育或接触，导致他们在初级 PC 提供方面的知识和信心水平较低。研究员表示需要和希望接受更好的 PC 培训。
