Division of General Pediatrics and Adolescent Medicine, UNC School of Medicine, Chapel Hill, NC.
Department of Emergency Medicine, Carolinas Medical Center, Charlotte, NC.
J Pediatr. 2021 Jul;234:142-148.e1. doi: 10.1016/j.jpeds.2021.03.013. Epub 2021 Mar 30.
To describe care coordination experience for families of children with inflammatory bowel disease (IBD) and compare use of health services between families who identified a primary care physician (PCP) vs a gastroenterologist as a child's main provider.
This is a cross-sectional survey of care coordination experiences and health services use for children 6-19 years old receiving care in the IBD program at a children's hospital during 2018. English-speaking parents completed the Family Experiences with Coordination of Care Survey about their child's main provider and reported past-year health services. Bivariate testing and multivariate logistic regression explored differences in care coordination experience and health services by main provider, adjusted for demographic and clinical variables.
A total of 113 of 270 (42%) invited patients participated. Among 101 patients with complete data, 41% identified a PCP main provider. Performance on 5 of 16 Family Experiences with Coordination of Care indicators was higher for patients reporting a gastroenterologist vs a PCP main provider. However, having a PCP vs gastroenterologist main provider was associated with greater use of any past-year primary care services (adjusted proportion 94% vs 75%; P = .01) and of mental health services when needed (95% vs 60%; P < .01). Need for IBD-related hospitalization and emergency department visits did not differ between groups.
Children with IBD may experience trade-offs in care coordination quality and important, non-disease-focused health services based on whom parents perceive as the main provider. Efforts to enhance cross-team coordination among families and primary and specialty care teams are needed to improve overall care quality.
描述炎症性肠病 (IBD) 患儿家庭的护理协调体验，并比较将初级保健医生 (PCP) 或胃肠病学家视为患儿主要提供者的家庭对卫生服务的使用情况。
这是一项横断面调查，针对在儿童医院 IBD 项目中接受治疗的 6-19 岁儿童的护理协调体验和卫生服务使用情况，调查于 2018 年进行。英语为母语的家长完成了关于其子女主要提供者的《家庭护理协调体验调查》，并报告了过去一年的卫生服务情况。使用单变量检验和多变量逻辑回归方法，根据人口统计学和临床变量，比较了主要提供者之间的护理协调体验和卫生服务差异。
在邀请的 270 名患者中，共有 113 名（42%）参与。在 101 名数据完整的患者中，41%的患者选择了 PCP 作为主要提供者。在 16 项《家庭护理协调体验调查》指标中，有 5 项指标的评分较高的患者报告其主要提供者是胃肠病学家而非 PCP。然而，与胃肠病学家相比，PCP 作为主要提供者与过去一年中更多的初级保健服务（调整后的比例为 94% vs 75%；P=0.01）以及需要时的心理健康服务（95% vs 60%；P<0.01）的使用相关。两组患者在 IBD 相关住院和急诊就诊需求方面无差异。
患儿的父母对主要提供者的选择可能会影响其护理协调质量和重要的非疾病相关卫生服务，这是患儿在这两方面的体验之间权衡的结果。需要加强家庭与初级保健和专科医疗团队之间的跨团队协调，以提高整体护理质量。
