Long-term Follow-up Program for Cardiac Surgery Survival Outcomes

Over the past three decades, survival for children undergoing congenital heart surgery has improved dramatically. Children suffering from heart defects that were uniformly fatal as recently as the 1980s now routinely survive into adulthood. With these early survival improvements, there is now the need to improve our understanding of longer-term complications and morbidities including:long-term survival, re-interventions, hospitalization, neurodevelopment and overall quality of life in order to optimize our patient’s health.

To address this need, the Cardiac Center at Children’s Hospital of Philadelphia several years ago initiated a program to incorporate the standardized collection of critical longitudinal outcome data into routine care. The program began in January 2014 and targeted children who had undergone a Society of Thoracic Surgeons Benchmark Operation since January 2007. Parents are contacted annually on their child’s birthday and asked to complete an age-appropriate questionnaire concerning medical events, activities and development, quality of life, and general health status. Follow-up has been obtained for over 2,000 children as of December 2016.

The following graphs present long-term survival data for each operation. This method displays the proportion of patients alive at points in time following surgery. Many children with congenital heart defects have additional medical conditions, such as genetic syndromes and preterm birth, which affect the risk of dying. These graphs represent overall survival and include patients who may have died from causes other than their heart defect. The risk of dying depends on the complexity of the heart defect, and is very low for simpler defects, for example, isolated coarctation of the aorta, and is greatest for patients with single ventricle heart defects including hypoplastic left heart syndrome (HLHS).

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