Singh Arunjot, Silvester Jocelyn, Turner Justine, Absah Imad, Sparks Brandon A, Walsh Catharine M, Bracken Julia M, Stanisz Joanna, Hajjat Temara, Badalyan Vahe, Chugh Ankur, Hoffenberg Edward J, Dowhaniuk Jenna K
Division of Gastroenterology, Hepatology and Nutrition Children's Hospital of Philadelphia Philadelphia Pennsylvania USA.
Department of Pediatrics Perelman School of Medicine at the University of Pennsylvania Philadelphia Pennsylvania USA.
JPGN Rep. 2024 May 27;5(3):276-283. doi: 10.1002/jpr3.12087. eCollection 2024 Aug.
While guidelines exist for the diagnosis and management of pediatric celiac disease (CeD), current practices in North America are not well-described. This study aimed to explore current practice patterns to identify gaps and direct future clinical, training and research initiatives.
A 23-item survey designed by the Celiac Disease Special Interest Group was distributed electronically to its members. Questions explored four themes: (1) screening and diagnosis pre and post the coronavirus disease (COVID)-19 pandemic, (2) treatment and monitoring, (3) family screening and transition of care, and (4) CeD focused training.
The survey response rate was 10.8% (278/2552). Most respondents were from the United States (89.9%, = 250) and Canada (8.6%, = 24). While endoscopy remained the gold standard, serology-based diagnosis was accepted by 47.5% (132/278). In response to the COVID-19 pandemic, 37.4% of providers changed their diagnostic practice. Barriers to care included: lack of insurance coverage for dietitians, wait times, and lack of CeD focused training. During fellowship 69.1% (192/278) reported no focused CeD training.
Survey results revealed practice variation regarding the diagnosis and management of CeD in North America including a substantial proportion accepting non-biopsy, serology-based diagnosis, which increased during the COVID-19 pandemic. Variations in screening, diagnosis, interval surveillance, and family screening were also identified. Dedicated CeD education in pediatric gastroenterology fellowship may be an opportunity for standardizing practice and advancing research. Future North American guidelines should take current care patterns into consideration and develop new initiatives to improve care of children with CeD.
虽然存在小儿乳糜泻（CeD）的诊断和管理指南，但北美目前的做法尚无详尽描述。本研究旨在探索当前的实践模式，以找出差距并指导未来的临床、培训和研究工作。
由乳糜泻特别兴趣小组设计的一项包含23个条目的调查问卷通过电子方式分发给其成员。问题探讨了四个主题：（1）冠状病毒病（COVID）-19大流行前后的筛查和诊断，（2）治疗和监测，（3）家庭筛查和护理过渡，以及（4）以CeD为重点的培训。
调查回复率为10.8%（278/2552）。大多数受访者来自美国（89.9%，n = 250）和加拿大（8.6%，n = 24）。虽然内镜检查仍是金标准，但47.5%（132/278）的受访者接受基于血清学的诊断。针对COVID-19大流行，37.4%的医疗服务提供者改变了他们的诊断做法。护理障碍包括：营养师缺乏保险覆盖、等待时间以及缺乏以CeD为重点的培训。在 fellowship 期间，69.1%（192/278）的受访者表示没有接受过以CeD为重点的培训。
调查结果显示北美在CeD的诊断和管理方面存在实践差异，包括相当一部分人接受非活检、基于血清学的诊断，这种情况在COVID-19大流行期间有所增加。还发现了筛查、诊断、间隔监测和家庭筛查方面的差异。在儿科胃肠病学 fellowship 中进行专门的CeD教育可能是规范实践和推进研究的一个机会。未来的北美指南应考虑当前的护理模式，并制定新的举措以改善CeD患儿的护理。
