Date
2019Journal
International Journal of Neonatal ScreeningPublisher
MDPI Multidisciplinary Digital Publishing InstituteType
Article
Metadata
Show full item recordAbstract
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. Copyright 2019 by the authors.Sponsors
This project is/was supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number HRSA-13-213, Integrating Newborn Screening Long-term Follow-up into Primary Care Practices.Identifier to cite or link to this item
https://www.scopus.com/inward/record.uri?eid=2-s2.0-85072370347&doi=10.3390%2fijns5030025&partnerID=40&md5=2e60cd0c8b19ef29e1c33c9906a4f4c7; http://hdl.handle.net/10713/11029ae974a485f413a2113503eed53cd6c53
10.3390/ijns5030025