Minnesota Title V MCH Needs Assessment Fact Sheets

Pregnant Women, Mothers and Infants

Newborn Screening: Blood Spot and Hearing

Summer 2004

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Size of the Problem

Since 1965, the Minnesota Department of Health has attempted to screen all infants born in Minnesota through the Minnesota Newborn Screening Program [1].

  • 69,987 infants were screened in 2003 with the Newborn Blood Spot with 80 confirmed positive tests
  • 65,845 infants had the Newborn Hearing screening in 2003 with 50 confirmed cases of hearing loss [2].

Seriousness

People affected by newborn screening
Over 68,000 Minnesota newborns and their families are affected by the two newborn screening programs annually. The Newborn Blood Spot screening is a state mandated test that requires participation from state hospitals/ primary care providers. The newborn hearing test is voluntary and is performed at 98% of Minnesota birthing hospitals [3].

Disparities
The access disparities have been greatly reduced because universal newborn screening programs are mandated or voluntarily adopted. However, no race or ethnicity disparity data is available at this time.

Minnesota Newborn Hearing Screening, 2002
  Percentages
MN Hearing 2002 actual
93%
MN Hearing 2004 goal
95%
US Hearing 2002 actual
65%

Economic
Studies have compared the cost of newborn screening ($61 in Minnesota) to the very high lifetime costs associated with caring for developmental/physically disabled child [4,5,6]. All studies have suggested that newborn screening for PKU, congenital hypothyroidism, and the rarer disorders result in a large cost savings to society in general. Cost effectiveness for some of the newer conditions now included in the blood spot screening panel have not been studied. According to recent studies, the estimated lifetime costs are expected to total $2.1 billion for persons born in 2000 with a hearing loss [7].

Interventions
The Healthy People 2010 objectives for newborn screening include: Screening for state mandated conditions; Timely follow-up diagnostic testing for screening positives; Timely enrollment of infants with diagnostic disorders in appropriate service intervention; and Increase the proportion of newborns who are screened for hearing loss by 1 month, have audiologic evaluation by age 3 months and are enrolled in appropriate intervention services by 6 months.

The American Academy of Pediatrics has recommended newborn hearing screening [8]. CDC has identified seven developmental goals for hearing screening in the United States.

Effectiveness of Interventions
Affected babies are at risk of mental retardation, physical disabilities and even death if they are not diagnosed and treated early. In 2003, 130 Minnesota infants were identified with a condition that required further diagnostic testing as a result of newborn blood spot and/or hearing screening. These infants may not have been identified if newborn screening were unavailable.

Status

Minnesota Resources
Minnesota has one of the nation’s more impressive participation rates in newborn screening. Over 300 hospitals and primary care providers in Minnesota provide blood spot screening to identify, prevent and/or minimize the effects of 35 disorders that can lead to developmental disability, serious medical conditions and death [1]. Out of 111 Minnesota birthing hospitals, 109 conduct a hearing screening on all of the newborns to identify early children with hearing loss so they can receive appropriate early intervention [2].

Public health programs and strategies that increase newborn hearing screening and blood spot testing include:

  • Under the federal Title V MCH Block Grant program, Minnesota has set a goal for 2007 of ensuring that 100% of newborns are screened, diagnosed and provided treatment for disorders identified by the state newborn screening program.
  • A memo of understanding has been signed between the Public Health Laboratory and the Center for Health Statistics to ensure that “real time” data linkages with the birth records. This system began a pilot phase in March 2004 with full linkage in Fall 2004.
  • There are 16 Early Hearing Detection and Intervention (EHDI) regional teams, each consisting of an audiologist, a teacher of the deaf, and an early Childhood Educator. They work within their region to build capacity in the region for early hearing loss detection and intervention. At the state level, the collaboration team consists of staff from MDH, DHS and MDE to work with the 16 regional teams. This regional and collaborative EHDI team concept is unique to Minnesota.
  • MDH distributes hearing brochures in multiple languages including Hmong, Spanish, Somali in addition to English.

Community Awareness
The participation by hospitals in both the newborn blood spot screening and the hearing screening, indicate a community awareness of these programs. However, for both the blood spot screening and the hearing screening, there remains work to be accomplished as evidenced by several major regional hospitals not reporting hearing screening data to MDH and parent comments about lack of knowledge of the screening.

Parents say they: Have not heard of newborn screening before delivery; Do not know if their baby was tested at birth; Think information about screening was often “lost” in the take home package from the hospital. Efforts to address community awareness are on-going.

References

1. MDH. Minnesota Newborn Blood Spot Screening. www.health.state.mn.us/divs/fh/mcshn/nbshome.htm
2. MDH. Universal Newborn Hearing Screening Bulletin. February 2004.
3. MDH. Infant Hearing Loss: Provider Fact Sheet. June 2004.
4. Brosnan, CA, Brosnan, P, Therrell, BL, et al. “A comparative cost analysis of newborn screening for classic congenital adrenal hyperplasia in Texas.” Pub Health Rep. 1998.113:170-178.
5. Dhondt JL, Farriaux JP, Sailly JC, Bebrun T. “Economic valuation of cost-benefit ratio of neonatal screening procedures for phenylketonuria and hypothyroidism.” J Inherit Metab Dis. 1991.14:633-639.
6. Tsevat, J, Wong, JB, Pauker, SG, Steinberg, MH. “Neonatal screening for sickle cell disease: a cost-effectiveness analysis.” J Pediatr. 1991.118:546-664.
7. CDC. Economic costs associated with mental retardation, cerebral palsy, hearing loss and vision impairment- US 2003. MMWR. Jan. 2004.53(3):57-59.
8. American Academy of Pediatrics. Newborn and Infant Hearing Loss: Detection and Intervention. Pediatrics. 1999.103(2):527-530.