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Quality of Life in adolescents with Congenital heart disease as perceived by patients and their parents.
Cardiac & Vascular Center, Samsung Medical Center.
문주령, 임경아, 이상철, 허준, 강이석, 전태국, 박표원, 정연이, 이흥재
Background : As a result of dramatic advance in medical and surgical management, the majority of infants with cardiac anomalies can be expected to reach adolescent period and adulthood. The purpose of this study was to assess the Pediatric Quality of life in adolescents with congenital heart disease using Pediatric Quality of life inventory(PedQL) and compare it to a that of normative adolescents. Method : The Pediatric Quality of life inventory(PedQL) was administered to 40 adolescents with heart disease and their parents. Mean patient age was 16.5yrs (range,13~18yrs), including 20 males and 20 females. Illness severity by cardiologist rating ranged from: 1=mild disease/no surgery(n=10), 2=moderate disease surgically corrected(curative) or requiring no therapy(n=10), 3=Surgically corrected with significant residual or need for further surgery(n=10), 4=uncorrectable/complex/palliative repair(n=10). Result: Compared with the normative sample, adolescents with heart disease reported significantly lower overall HRQOL(Health related Quality of Life) (p<.001), including physical (p<.05), psychosocial (p<.001) and school function (p<.001). Patient proxy-ratings of the adolescents QOL were also significantly lower than the norm across dimension (p<.001). The greatest QOL difference was related to social functioning(Mean/SD 80.1/15.5 cardiac group vs. 95.0/12.6 norm). Physical functioning was significantly related to cardiac symptom (r=.825 self-report, r= .785 parent-report p<.001). Psychosocial QOL was not related to severity of heart disease. Adolescent females reported worse psychosocial QOL than male (p=0.01). Item analyses revealed specific psychosocial problems such as feeling angry and worry about the future. Worry about the future was unrelated to severity of heart disease (r=.018, p=ns). Conclusion: As perceived by adolescent patients and their parents, quality of life is worse in adolescent with heart disease than normative samples. Assessment of HRQOL during adolescent period is essential for tailored intervention that will promote long-term QOL in the growing patient population.


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