Outcomes of Congenital Heart Disease: A Review

Angela Green


Pediatr Nurs. 2004;30(4) 

In This Article

Cardiac Morbidity

Little information is available on hospitalizations and complications in children with cardiac problems. In one study conducted in the Czech Republic, 26.8% of children with CHD aged 8-13 years required medications (Samanek, 2000). In a group of adults with CHD in Belguim, approximately 20% required hospitalization in a 1-year period, and 5.7% required two to four hospitalizations. Cardiac surgical procedures were required by 3.7%, and medications were required for 27% (Moons et al., 2001). In another study, 86% of adults with complex CHD reported at least one major medical complication including bacterial endocarditis, embolic events, or dysrhythmias (Horner, Liberthson, & Jellinek, 2000). Dysrhythmias are an important source of morbidity and mortality in patients with CHD and are especially common in individuals who have undergone atrial switch repair for transposition of the great arteries, tetralogy of Fallot repair, or Fontan palliation for single ventricle (LeRoy, 2001; Triedman, 2002). In a group of adults with single or systemic right ventricle, 20%-40% reported heart failure, with the highest incidence in the single ventricle group (Piran, Beldtman, Siu, Webb, & Liu, 2002).

In a heterogeneous group of adults with CHD in the U.S., 9.6% reported disability as indicated by New York Heart Association Class III or IV functional classification (Simko & McGinnis, 2003). In Canada, in a high-risk group of adults with single ventricle or a systemic right ventricle, more patients reported disability with 13.3% in Class III and 4.3% in Class IV (Piran et al., 2002). No such data has been reported for children, perhaps in part because the classification system was developed for adults and is standardized only for that population (Connolly, Rutkowski, Auslender, & Artman, 2001).

In a study of children and adults in the U.K., 89.7 % were symptomatic and 26.8% reported at least one symptom that was relatively disabling. Breathlessness and palpitations were the most common symptoms. Other symptoms included dizziness, depression, and cyanosis (Swan & Hillis, 2000). Two U.S. studies examining health-related QOL reported conflicting results in regard to the symptom experience. One study found that children with CHD were more likely to experience symptom-related distress than controls (Connolly, Rutkowski, Auslender & Artman, 2002). A second study, however, detected no significant difference on a symptom subscale between children with CHD and normal controls (Krol et al., 2003).

In the Czech Republic, poor exercise tolerance was reported by 3.2% of school-aged children with CHD. However, 59.5% of the children reported participating in recreational sports, and 6.7% reported participating in competitive sports (Samanek, 2000). Exercise tolerance assessed by formal exercise testing has been reported as subnormal in adults with even simple defects such as ventricular septal defect and pulmonary stenosis. Among those with complex defects, such as single ventricle, exercise tolerance was markedly decreased (Foster et al., 2001). Among a heterogeneous group of adults with CHD, 5% were very active with no limitations, 33% were performing regular moderate exercise, 31% were involved in light exercise, 25% performed no regular physical exercise, and 5% were severely limited. Symptoms limited exercise for 32.9% of this cohort (Swan & Hillis, 2000).

Children with CHD have increased energy requirements and may also have decreased energy intake. Thus, malnutrition and growth failure in early childhood are widely recognized complications. However, much of the research in this area is not current and may not reflect outcomes with current medical and surgical technology. In the single U.S. study reported in the past decade, 52% of young children with CHD had weights below the third percentile, 37% had heights below the third percentile, and 12%-25% had skinfold thickness assessments below the third percentile (Mitchell, Logan, Pollock, & Jamieson, 1995). A similar study in Turkey revealed growth failure in more than 50% of children and identified cyanosis, cyanosis, pulmonary hypertension, and congestive heart failure as significant risk factors for growth failure and malnutrition (Varan, Tokel, & Yilmaz, 1999). In another report, Foster et al. (2001) noted that these problems persist into adulthood. Adults with CHD continue to struggle with physical appearance issues related to small stature.


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