Newborn Screening and the Medical Home

What is screening?
Screening is the use of a formal, objective, validated instrument to determine specific diagnoses.¹

What is surveillance?
Surveillance is a flexible, continuous process in which knowledgeable professionals perform skilled observations of children during child health care (in consultation with families, specialists, child care providers, etc.) ²

Quality surveillance and screening are the keys to the early detection of disabilities.
Although surveillance and screening can occur in many different settings, it is especially important that they are linked to one location responsible for coordinating services, ideally the Medical Home.

A Medical Home is an approach to providing high-quality, cost effective health care in which the primary care physician works in partnership with the family. Care within a Medical Home is accessible, family-centered, continuous, comprehensive, coordinated, compassionate, and culturally effective.

Coordination of all surveillance activities and screening services through the Medical Home would help reduce duplication of services and cost, while helping to prevent loss to follow-up. One aspect of the medical home is screening and surveillance.

There are several strategies to improve the link between screening and the Medical Home:

• For newborn screening, make every effort to identify the Medical Home prior to birth. Include this information with the specimen/test to facilitate the communication of results and follow-up with families.
• Ensure that the results of all screening performed outside of the primary care setting (e.g. school-based screening, community-based screening, etc) are communicated to the Medical Home in a timely manner.

The Role of the medical home
It is vital for primary care clinicians to be sensitive to their role as the medical care provider. The physician, family, and service providers work together to create a caring, collegial, and compassionate atmosphere that ensures the services are of high quality, accessible, continuous, comprehensive, and culturally effective.

• The Child Health Professional's Role:
  • Administer (or oversee the administration) of screen
  • Evaluate screening test results
  • Depending on results:
    • Refer appropriately; initiate follow-up care
    • Continue surveillance
    • Work continuously in partnership with family
      
• The Family's/Guardian's Role:
  • Voice and document any concerns about your child’s development to your child's health professional
  • Participate at a "partner-level" in the decision-making process with your child's health professional

Web sites/Organizations
American Academy of Pediatrics Newborn Screening Information: www.aap.org/healthtopics/newbornscreening.cfm

National Newborn Screening and Genetics Resource Center: genes-r-us.uthscsa.edu/
The mission of the NNSGRC is to provide a forum for interaction between consumers, health care professionals, researchers, organizations, and policy makers in refining and developing public health newborn screening and genetics programs and to serve as a national resource center for information and education in the areas of newborn screening and genetics.

Coalition of State Genetics Coordinators: www.stategeneticscoordinators.org/
The Coalition of State Genetics Coordinators (CSGC) is an organization of state and territorial genetics coordinators and others who support the mission of CSGC. The mission of the Coalition of State Genetics Coordinators (CSGC) is to promote core public health functions as they apply to genetics.

March of Dimes Resource Center: www.modimes.org/
The March of Dimes Archives serves as a repository for non-current records of lasting or permanent administrative, fiscal, legal or historical value, relating to the history and operations of the March of Dimes.

National Conference of State Legislatures (NCLS): www.ncsl.org/
Links to state newborn screening legislative activity and general newborn screening information. (Click "Public User" on homepage for Genetic Technologies Project)

National Center for Hearing Assessment and Management: www.infanthearing.org
Wealth of information and resources concerning the many dimensions of early hearing detection and intervention

1. Meisels SJ, Provence S. Screening and Assessment. Guidelines for Identifying Young Disabled and Developmentally Vulnerable Children and Their Families. Washington, DC: National Center for Clinical Infant Programs; 1989

2. Dworkin SM, Shannon A, Dworkin P. ChildServ Curriculum. Hartford, CT: Center for Children's Health and Development, St Francis Hospital and Medical Center;1999

Last Updated August 18, 2008