The quality of metabolic newborn screening specialty care services: results of a survey of primary care providers.

Since 2001, approximately 500 children with inborn errors of metabolism (IBEM) have been identified through the Minnesota newborn screening program. The vast majority of them receive specialty care at the Pediatric Metabolism Clinic or the Phenylketonuria (PKU) Clinic at the University of Minnesota. In order to determine provider satisfaction with the quality of services at those clinics, we surveyed primary care physicians, certified nurse practitioners and a certified physician assistant, collectively referred to in this article as primary care providers, who referred patients with IBEM to one of the clinics. Our objective was to evaluate the quality of metabolic team specialty services for children with IBEM; identify strategies to ensure coordinated and comprehensive care for children with IBEM; improve metabolic specialty care and connection to services for children with IBEM and their families; and gather data to inform newborn screening programming through the Minnesota Department of Health. Responses revealed a high level of overall satisfaction with the referral processes, 2) the quality of verbal communications and written reports, 3) feedback to the primary care team and 4) the management plans for addressing the needs of children with IBEM within the primary care setting. Improvement in communication about emergency planning for children with IBEM is clinics as a result of the survey findings.