Badawi Deborah, Bisordi Katharine, Timmel Marilyn J, Sorongon Scott, Strovel Erin
Maryland Department of Health, Baltimore, MD 21201, USA.
Department of Pediatrics, Division of Human Genetics, University of Maryland School of Medicine, Baltimore, MD 21201, USA.
Int J Neonatal Screen. 2019 Jul 25;5(3):25. doi: 10.3390/ijns5030025. eCollection 2019 Sep.
This demonstration project explored the feasibility of utilizing data from pediatric primary care providers to evaluate the long-term outcomes of children with disorders identified by newborn screening (NBS). Compliance with national guidelines for care and the morbidity for this population was also examined. Primary care practices were recruited and patients with sickle cell disease or who were deaf/hard of hearing were given the opportunity to enroll in the study. Data were collected on the quality of the medical home with practice data compared to family responses. Clinical outcomes for each patient were assessed by review of medical records and patient surveys. These data sources were compared to determine accuracy of primary care data, morbidity, and receipt of preventive care. Electronic data sharing was explored through transmission of Clinical Document Architecture (CDA) files. Care coordination was a challenge, even in highly accredited medical homes. Providers did not have complete information regarding clinical outcomes and children were not consistently receiving recommended preventive care. Electronic data sharing with public health departments encountered interface challenges. Primary care providers in the USA should not currently be used as a sole source to evaluate long-term outcomes of children with disorders identified by NBS.
该示范项目探讨了利用儿科初级保健提供者的数据来评估通过新生儿筛查（NBS）确诊疾病的儿童长期预后的可行性。同时还研究了该人群对国家护理指南的遵循情况及发病率。招募了初级保健机构，患有镰状细胞病或失聪/听力障碍的患者有机会参与该研究。通过将机构数据与家庭反馈进行比较，收集了有关医疗之家质量的数据。通过查阅病历和患者调查评估每位患者的临床结局。比较这些数据源以确定初级保健数据的准确性、发病率和预防性护理的接受情况。通过传输临床文档架构（CDA）文件探索了电子数据共享。即使在高度认可的医疗之家中，护理协调仍是一项挑战。提供者没有关于临床结局的完整信息，儿童也未始终接受推荐的预防性护理。与公共卫生部门的电子数据共享遇到了接口挑战。目前，美国的初级保健提供者不应作为评估通过NBS确诊疾病儿童长期预后的唯一来源。
