Abstract 2678: Quality of Life Outcomes as Perceived by Children with Heart Disease: Are Two Ventricles Better than One?
In patients with cardiovascular disease (CVD), self-perceived quality of life (QOL) has been recognized as an important health outcome which cannot be inferred from clinical and biomedical measures. We compared self-perceived QOL in children with Fontan palliation of single ventricle (SV, n=34), biventricular repair of cyanotic congenital heart disease (BV, n=23), and heart transplant (HTx, n=32). Children completed the Pediatric Quality of Life Inventory Core Scales to assess physical and psychosocial QOL dimensions of physical, emotional, social, and school functioning, and the Cardiac Module Scales to assess perceptions related to symptoms, physical appearance, treatment anxiety, cognitive problems, and communication. There were 47 male and 42 female respondents. There were no significant differences between the groups with respect to mean age at assessment (12.1 yrs, range 6.3–18.4y) or mean time since surgery (6.9 yrs, range 1–15 yrs). HTx patients were on significantly more medications (mean 5.8) than BV patients (mean 0.6) or SV patients (mean 1.5). Results: There were no significant differences in physical or psychosocial QOL scale scores reported by children with SV, BV, or HTx. On the cardiac module scales, children with SV reported significantly more symptoms/lower scores (mean/SD = 66.6/17.7) than children with BV (mean/SD =71.4/14.4) and children with HTx (mean/SD 80.5/12.1), F = 7.2, p < .01, primarily related to cyanosis with activity in children with SV. Children with HTx tended to report worse school/cognitive QOL than children with BV (t = 2.04, p = .05), but were not significantly different than children with SV. Conclusion: In spite of increased symptoms reported by children with SV, perceived physical and psychosocial QOL is not significantly different in children with SV in comparison to children with BV or HTx. Clinicians must look beyond anatomic diagnosis and clinical symptoms to identify nonmedical or psychosocial morbidities in children with CVD.