The neurodevelopmental outcomes associated with congenital heart disease (CHD) will be discussed today in the Dan G. McNamara Lecture. The keynote speaker, Jane Newburger, MD, MPH, FACC, will review research to date on the causes of neurodevelopmental impairments that occur in some individuals with CHD, considering the typical neurobehavioral signature of findings, including difficulties with attention and executive function.

“Thirty years ago, investigators were just beginning to recognize the scope of the problem of neurodevelopmental impairments in CHD patients,” says Newburger, who is the associate cardiologist-in-chief and director of the neurodevelopmental program at Boston Children’s Hospital in Boston, MA. “In this era, primary repair of CHD in the newborn period was becoming widespread. By the mid-1990s, investigators moved beyond risk factors in the operating room to recognizing the adverse effects of pre- and post-operative hemodynamic instability. It wasn’t until a decade ago that interest began to grow in genetic and in-utero factors.”

Newburger’s talk, "Neurodevelopmental Outcomes in CHD: Where Have We Been and Where Are We Going?” will take place from 12:30 to 1:45 p.m. in room S403, and will forecast the translation of her findings across the lifespan of patients with CHD, additionally exploring new directions for intervention to improve the outcomes of children going forward.

“Today, we realize that neurodevelopmental outcomes are best predicted by innate patient factors like genetics and socioeconomic status, as well as global morbidity, rather than by specific cardiac surgical management techniques,” she explains.

Newburger predicts that in the next decade there will be tremendous advances in the understanding of both the causes and treatments of neurocognitive comorbidities associated with CHD. “We will uncover novel genetic mutations that are associated with both CHD and neurocognitive disabilities. We will better understand the pathogenesis of in-utero factors related to abnormal fetal circulation. We will have refined therapies to preserve oxygen and substrate delivery to the brains of fetuses with forms of CHD such as hypoplastic left heart syndrome or d-transposition of the great arteries,” she says.

Newburger also suggests that in the future, physicians will be able to delineate the relationship between brain structure and function using advanced brain imaging techniques. “By studying brain surface topology, quantitative T1 and T2 mapping, and structural and functional connectivity, we will be able to know so much more about how the brain is impacted in CHD patients.” Additionally, Newburger projects that there will be significant findings in how neurocognitive deficits in children and adolescents, including executive dysfunction, affect the later employment, relationships and quality of life in adults with CHD.

Clinical and health psychologist Adrienne Kovacs, PhD, of the Oregon Health and Science University Knight Cardiovascular Institute in Portland, will follow Newburger’s presentation with a discussion of the psychosocial assessment, treatment and outcomes in adult congenital heart disease (ACHD). “Through increasing collaboration between pediatric and adult providers, we now have a broader perspective of what it means to live with CHD,” she says. “In addition to maximizing life expectancy, it is our collective responsibility to help patients with CHD live as rich and full as lives as possible.” She adds that there is an increasing recognition that comprehensive care of patients with CHD, regardless of their age, includes attending to their quality of life and psychosocial needs. “Just like children and adolescents with CHD, adult patients face unique psychosocial challenges compared to their healthy peers,” says Kovacs. According to Kovacs, some of these challenges include elevated risk of depression and anxiety among adult patients living with CHD.

Keywords: ACC Publications, ACC Annual Scientific Session, Anxiety, Comorbidity, Cooperative Behavior, Depression, Heart Defects, Congenital, Life Expectancy, Neuroimaging, Operating Rooms, Quality of Life, Research, Research Personnel, Risk Factors, Transposition of Great Vessels

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