Pediatric-acquired brain injury is the leading cause of death and disability in children and young adults in the United States. Although the consequences of childhood brain injury are lifelong and multi-faceted, access to comprehensive and integrated care is rare.

University of Iowa Children's Hospital has been selected to participate in an initiative that aims to change that. The initiative, known as the National Pediatric Acquired Brain Injury Plan (PABI Plan), plans to develop a seamless, standardized, evidence-based system of care that will be accessible to children and their families regardless of where they live in the country.

UI Children¹s Hospital will be the State Lead Center of Excellence for Iowa to implement the PABI Plan, which was developed by the National Advisory Board of the Sarah Jane Brain Foundation. The foundation has selected 52 centers across the nation—one in each state plus the District of Columbia and Puerto Rico—to establish this system of care.

Long-term Consequences

"Dealing with pediatric brain injury and its long-term consequences can be incredibly hard for kids and their families. Improving coordination of care and getting these children the services they need is really crucial," said Scott Lindgren, PhD, UI professor of pediatrics and project director of the UI effort. "This is an exciting opportunity to be part of a national effort to improve services for children who have experienced a brain injury. I don¹t think there could be better national consensus about pediatric brain injury than is represented in this plan."

The UI's role as Lead Center of Excellence for Iowa will build on the unique strengths of the Center for Disabilities and Development and the Child Health Specialty Clinics in treating and managing pediatric traumatic brain injury and developing statewide partnerships that improve the quality of life and access to care and services for all Iowa youth.

National Network

"The plan is to create a national network to insure that pediatric brain injury is well-managed in every state," Lindgren said. "However, different states will need to develop different strategies and form different types of partnerships to implement the plan. Our role will be to coordinate efforts in Iowa and help build those partnerships."

The UI Center for Disabilities and Development has a long history of providing clinical services and conducting research to assist children in managing the long-term effects of a pediatric brain injury. Research by Lindgren and colleagues has improved understanding of the complications of pediatric brain injury. In addition, the center's statewide brain injury consultation service, carried out through collaboration with the Iowa Department of Education and local school teams, helps implement effective strategies to assist children in adjusting to the effects of injury on learning and behavior.

The Child Health Specialty Clinics, directed by Debra Waldron, MD, UI clinical associate professor of pediatrics, are a statewide network of clinics dedicated to the principles of family-centered care and care coordination that serve children and youth who have special health care needs.

As an integrated medical center, UI Health Care also is home to national experts in pediatric trauma care and clinical and basic neurosciences. In addition, other UI colleges also have expertise in many aspects of child health and safety, including injury prevention. Lindgren hopes that as the PABI plan is established, UI faculty and staff from diverse disciplines will lend support to the effort.

Goals

UI Children's Hospital and the other PABI Lead Centers of Excellence will focus on four main goals:

• To prevent pediatric acquired traumatic brain injury through changes in social practices and policy
• To facilitate the provision of care and services to maximize the child/youth¹s recovery and development after brain injury and to support the family though all stages of recovery
• To improve the capacity of schools and community agencies to deliver rehabilitative and educational services and support to the child/youth and family
• To use research to better understand the effects of neurological insults on the developing brain, and to research the individual, medical and social environmental determinants of recovery and function, as well as the most effective interventions for improving child/youth and family outcomes

Pediatric-acquired brain injury can be caused by motor vehicle accidents, sports injuries, falls and abuse as well as non-traumatic events, including stroke, brain tumors and infections. The Centers for Disease Control and Prevention reports that for children aged 14 and under there are 2,685 deaths, 37,000 hospitalizations, and 435,000 emergency room visits attributable to traumatic brain injury annually.

The Sarah Jane Brain Foundation is a non-profit organization whose mission is to assist in the research of new developments for children recovering from pediatric acquired brain injury (PABI) and the rehabilitation of these children.

For more information:

Scott Lindgren, PhD

Debra Waldron, MD

University of Iowa Children's Hospital

Center for Disabilities and Development

Child Health Specialty Clinics

National Pediatric Acquired Brain Injury Plan (PABI Plan)

Sarah Jane Brain Foundation