Abstract

Introduction: High rates of survival in Congenital Heart Disease (CHD) allowed patients to face different challenges in life cycle, and made the topics on adjustment and quality of life more and more central in healthcare. Hypothesis: We tested the hypothesis that CHD has a negative impact over psychosocial adjustment, psychiatric morbidity, quality of life and school performance, and that the severity of disease and the number of surgeries increase the negative impact over adjustment and the social support generates a buffer, good effect on it. Objective: We aimed to study Quality of Life (QOL), Psychosocial Adjustment (PSA), Psychiatric Morbidity, School Performance, Physical Limitations, and Social Support of adolescents and young adults with CHD. Methods: We evaluated 110 CHD patients, 62 males, aged from 12 to 26 years old (M=18.00 ± 3.62), 58 cyanotic. The participants were interviewed on such topics as social support, family/educational background, self-image, physical limitations and emotional adjustment, were administered a standardized psychiatric interview (SADS-L) and completed self-report questionnaires on QOL (WHOQOL-BREF) and PSA (YSR and ASR). Observational versions of the same questionnaires (CBCL, ABCL) were filled by one of their relatives. Full clinical and demographic history was collected. Results: We found a 22% rate of lifetime prevalence of psychopathology (14.5% in males and 31.3% in females) and 50% of school retentions (M=1.50 years + 0.50). Patients with severe forms of CHD showed worse PSA than those with moderate and mild forms of illness (internalization: u=939.000; p=0.030), the cyanotic versus acyanotic and those with moderate-to-severe residual lesions versus mild ones have worse QOL on physical dimension; those submitted to surgery showed worse QOL on physical (t=-2.525; p=0.013), psychological (t=-2.394; p=0,018), social relationships (t=-2.502; p=0,014) and general (u=1294,000; p=0.006) dimensions, and worse PSA (more withdrawn: u=719,000; p=0,037). Social support has a great impact improving patients’ physical (t=2.707; p=0,008), psychological (t= 2.755; p=0.007), social relationships (t=4.976; p=0,000), environment (t=3.085; p=0,003) and general (u=623.500; p=0,000) QOL and poorer social support resulted in more withdrawn (u=557.500; p=0.000) and social problems (u=748.500; p=0,023). Patients with more physical limitations showed worse physical (t=-2.093; p=0,039), psychological (t=-2.674; p=0.009) and general (u=971.500; p=0,002) QOL and more withdrawn (u=1023.000; p=0,015). Female patients showed more somatic complaints (u=260.000;p=0,011), anxiety/ depression (u=984.000;p=0,002), aggressive behavior (u=920.500;p=0,001), thought problems (u=1069.500;p=0,010), internalization (u=869.000;p=0,000) and externalization (u=1163.000; p=0,050). Good performance in school also showed a significant impact incrementing QOL and PSA. Conclusion: We concluded that we should set a special emphasis in maximizing social support and improving school performance, when supplying care in CHD, as they have a positive impact over self-confidence of patients and life adjustment.

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