RD146 - Follow-Up Care and Tracking Systems for Preterm and Low-Birth Weight Infants

Executive Summary:

This is the second year of a study undertaken by the Joint Commission on Health Care (JCHC) examining the need for a tracking system for babies born early and/or with low-birth weights. Preterm/low-birth weight infants are subject to an increased risk of developmental delay by the circumstances of their birth. Immediate delays may not be readily apparent at birth or soon after, but are often recognized once the child enters school. Moreover, the optimal time for providing services is early in life when the development of the brain and central nervous system may be influenced. By the time a child reaches school age, this time has passed.

In 2006, JCHC staff convened a workgroup to examine the adequacy of follow-up services and the potential need for a tracking system for preterm/low-birth weight infants in Virginia. The workgroup cited anecdotal evidence that families were having difficulty accessing services, with contributory factors including a general lack of understanding regarding the importance of follow-up services, the cost of services, and the restrictive eligibility criteria for public programs. It was difficult to determine the extent to which service access was a problem since preterm/low-birth weight status generally is not tracked. JCHC subsequently voted to convene a workgroup in 2007 to determine whether existing data and tracking systems could be adapted to provide the needed information.

In 2007, the JCHC-convened workgroup verified that no State data system specifically identifies and tracks children who were preterm/low-birth weight at birth. While a number of State programs serve some of these children, no program consistently identifies specifically which of the children served were preterm/low-birth weight. Obstacles to instituting this type of tracking include the lack of common identifiers across agencies, the need for a coordinated interagency approach to tracking children across agencies, and the restrictions contained in the privacy provisions of the federal Family Educational Rights and Privacy Act. JCHC members authorized the Chairman to make a number of letter requests which are first steps in determining the State’s ability to address the aforementioned obstacles. The letters request the following actions:

• The Department of Mental Health, Mental Retardation and Substance Abuse Services (DMHMRSAS) make low-birth weight and preterm information mandatory data fields when local partners electronically submit Part C early intervention.

• The Virginia Department of Health (VDH) report to JCHC in 2008 regarding service information collected through the Pregnancy Risk Assessment Monitoring System survey.

• VDH and DMHMRSAS report to JCHC in 2008 on the status of using the same unique identifier for children served by two programs the agencies administer (Virginia Infant Screening and Infant Tracking System and the Infant and Toddler Connection) and on the feasibility of studying outcome data on low-birth weight and preterm infants who receive Part C services.

• VDH report to JCHC in 2008 on the status of the pilot linking birth certificate information to certain children’s records maintained by the Department of Medical Assistance Services.

• VDH, with assistance from DMHMRSAS, report to JCHC in 2008 on the feasibility of studying outcome data on low-birth weight and preterm infants that receive Part C services. (Restrictions on VDH’s ability to access educational records protected by the Family Educational Rights and Privacy Act are the primary obstacle.)

On behalf of the Joint Commission and staff, I would like to thank the numerous individuals who assisted in this study, including representatives from the Comprehensive Health Investment Project of Virginia; Department of Education; Department of Health; Department of Medical Assistance Services; Department of Mental Health, Mental Retardation and Substance Abuse Services; March of Dimes; The Medical Society of Virginia; Virginia Association of Community Services Boards; Virginia Association of Health Plans; and Virginia Hospital and Healthcare Association.

Kim Snead
Executive Director
June 2008