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National Survey of Providers Treating Patients With Metabolic Disorders Identified by Newborn Screening Demonstrates

Monica R McClain1, Robert J McGrath2, Michelle L Stransky2

  • 1University of New Hampshire, Durham, NH, USA monica.mcclain@unh.edu.

Clinical Pediatrics
|December 4, 2014
PubMed

Insights

Newborn screening for metabolic disorders requires significant provider time, with inadequate reimbursement hindering optimal infant care. System reform is needed to improve healthcare access and outcomes for these infants.

Area of Science:

  • Medical Genetics
  • Pediatric Healthcare
  • Newborn Screening Programs

Background:

  • Metabolic disorders identified via newborn screening (NBS) require specialized care.
  • Infants diagnosed with these conditions need comprehensive support from birth to one year.
  • Current care processes for these infants are not well-defined.

Purpose of the Study:

  • To evaluate the care processes for infants diagnosed with metabolic disorders through NBS.
  • To assess the scope and intensity of services required for quality care.
  • To identify challenges in providing healthcare for this population.

Main Methods:

  • A survey instrument was utilized to gather data from healthcare providers.
  • The survey assessed the services provided to infants from birth to one year of age.
  • Descriptive analyses were performed; no significance testing was conducted.

Main Results:

  • Providers dedicate substantial time to non-direct patient care activities.
  • Lack of reimbursement for services emerged as the most significant challenge.
  • The provision of genetics services is labor-intensive.

Conclusions:

  • Current insurance coverage and reimbursement for metabolic disorder services are insufficient.
  • Healthcare payment and system reforms are essential for optimal patient care.
  • Addressing reimbursement issues is critical for improving care for infants with NBS-identified metabolic disorders.
Abstract

Keywords:
genetic serviceshealth care deliveryhealth care reforminborn errors of metabolismnewborn screening

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