Division of Hematology and Oncology, Department of Pediatrics, Feinberg School of Medicine, Northwestern University, Chicago, Illinois, United States.
Division of General Surgery, Sanford School of Medicine, University of South Dakota, Sioux Falls, South Dakota, United States.
Pediatr Blood Cancer. 2020 Jun;67(6):e28275. doi: 10.1002/pbc.28275. Epub 2020 Apr 11.
The patient-centered medical home (PCMH) has been proposed as a model for comprehensive care coordination and delivery for children with sickle cell disease (SCD), yet little is known regarding the implementation of PCMH core concepts on adherence to preventative care measures, health care utilization, and parent satisfaction.
We implemented the newborn cohort clinic (NCC) to explore the application of the PCMH model for infants and children with SCD from birth to age 3 years in 2011. In July 2017, we conducted a retrospective chart review to evaluate subjects currently or previously followed in the clinic. We surveyed parents in the NCC to assess their satisfaction with their experience.
A total of 112 patients have been managed in the NCC. All patients received penicillin prophylaxis, while 70% and 73% of patients, respectively, received the 23-valent pneumococcal vaccine and an initial transcranial Doppler by age 36 months. Most (92 of 112) of the subjects utilized the emergency department (569 encounters), with 86% of encounters for fever or other sickle cell-related complications. The majority of parents indicated satisfaction with the clinic, with 71% saying clinic providers always or usually spent enough time with their child, listened carefully to them (81%) and were sensitive to family values and customs (77%).
A comprehensive sickle cell clinic as a component of a PCMH is feasible and can achieve high levels of preventative care. Parents are largely satisfied with this model of care.
患者为中心的医疗之家（PCMH）已被提议作为一种综合医疗协调和提供镰状细胞病（SCD）儿童的模式，但对于 PCMH 核心概念在预防保健措施、医疗保健利用和家长满意度方面的实施情况知之甚少。
我们于 2011 年实施了新生儿队列诊所（NCC），以探索将 PCMH 模型应用于从出生到 3 岁的 SCD 婴儿和儿童。2017 年 7 月，我们进行了回顾性图表审查，以评估目前或以前在诊所就诊的患者。我们对 NCC 的家长进行了调查，以评估他们对就诊体验的满意度。
NCC 共管理了 112 名患者。所有患者均接受青霉素预防治疗，分别有 70%和 73%的患者在 36 月龄时接受了 23 价肺炎球菌疫苗和初次经颅多普勒检查。大多数（112 例中有 92 例）患者使用了急诊室（569 次就诊），86%的就诊是因为发热或其他镰状细胞相关并发症。大多数家长表示对诊所满意，71%的家长表示诊所的医护人员总是或通常会花足够的时间与孩子在一起，认真倾听他们的意见（81%），并对家庭价值观和习俗敏感（77%）。
作为 PCMH 的一部分，综合镰状细胞病诊所是可行的，可以实现高水平的预防保健。家长对这种护理模式基本满意。
