Outcomes of Congenital Heart Disease: A Review

Angela Green

Disclosures

Pediatr Nurs. 2004;30(4) 

In This Article

Quality of Life (QOL)

A number of authors have found good or improved QOL in survivors (Moons et al., 2001; Tong et al., 1998). However, limited research has examined QOL in this group and even less research has looked at improvements with modern medical and surgical management of these individuals. In one of the few studies to date, Connolly and colleagues (2002) found significant differences between children with CHD and controls in parental perceptions of children's abilities to fulfill role functions, use of health care resources, and symptom-related distress. No psychological differences were reported between the groups (Connolly et al., 2002). Recent studies in the Netherlands and Norway using standardized measures of QOL reported no significant difference in overall QOL score between children with CHD and children unaffected by CHD (Krol et al., 2003). The relationship between health-related QOL and severity of cardiac diagnosis was not significant. Nevertheless, children with CHD scored lower than normal children on the domains of motor functioning and autonomy on both child and parent ratings. Parents also rated children with CHD lower on cognitive functioning (Krol et al., 2003).

Simko and McGinnis (2003) compared a heterogeneous group of adults with CHD to healthy controls using standardized measures and found that adults with CHD reported significantly lower QOL and more problems on both physical and psychosocial dimensions. Specifically, scores on sleep, rest, emotional behavior, social interaction, recreation, and home management were reported in the mild disability range (Simko & McGinnis, 2003).

Three studies have reported QOL in adults with specific categories of CHD. In the Netherlands, those with minor CHD were reported to have QOL similar to the general population (Fekkes et al., 2001). In contrast, a British study reported that surgically cured adults with CHD had lower QOL than the general population (Lane, Lip, & Millane, 2002). The same study found that when more complex categories were considered, palliated adults reported QOL scores similar to the general population. However, this group did have poorer health perception and poorer physical functioning than the general population (Lane et al., 2002). In the Netherlands, adults with complex CHD reported lower QOL than the general population on almost all dimensions. Reported scores were significantly lower on gross motor functioning, physical functioning, role functioning, physical,vitality, and general health perception. In this same study, objective indicators of severity such as cyanosis, heart failure, or dysrhythmia did not correlate with QOL (Kamphuis, Ottenkamp, et al., 2002). Other studies, however, found that cyanotic adults reported lower QOL scores than matched acyanotic adults (Lane et al., 2002). Finally, as might be expected, inoperable patients reported lower QOL than the general population (Lane et al., 2002).

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