ObjectivesOur purpose was to study psychosocial adjustment and psychiatric morbidity of adolescents and young adults with congenital heart disease (CHD).DesignAll assessment measures were obtained on a single occasion. Clinical data was obtained through the patient's clinical records.SettingA teaching and tertiary care facility in Porto, Portugal.ParticipantsWe evaluated 110 CHD patients (62 male) aged from 12 to 26 years (mean=18.00±3.617), 58 cyanotic. All assessment measures were obtained on a single occasion in a tertiary hospital. Demographic information and clinical history were collected.Primary and secondary outcome measuresQuestionnaires regarded topics such as social support, family educational style, self-image and physical limitations, a standardised psychiatric interview Schedule for Affective Disorders and Schizophrenia—Lifetime version (SADS-L), and a self-report questionnaire on psychosocial adjustment, youth self-report or adult self-report. One of the relatives completed an observational version of the same questionnaire (child behaviour checklist (CBCL) or ABCL (adult behaviour checklist)).ResultsWe found a 21.8% lifetime prevalence of psychopathology, 31.3%, in females, 14.5% in males, showing a somewhat increased proneness in CHD patients. Females also showed worse psychosocial adjustment, with more somatic complaints (u=260 000; p=0.011), anxiety/depression (u=984 000; p=0.002), aggressive behaviour (u=920 500; p=0.001), attention problems (u=1123 500; p=0.027), thought problems (u=1069 500; p=0.010), internalisation (u=869 000; p=0.0) and externalisation (u=1163 000; p=0.05). Patients with severe CHD (u=939 000; p=0.03) and surgical repair (u=719 000; p=0.037) showed worse psychosocial adjustment. Those with poor social support showed more withdrawal (u=557 500; p=0.0) and social problems (u=748 500; p=0.023), and patients with unsatisfactory school performance revealed more anxiety/depression (u=916 000; p=0.02) and attention problems (u=861 500; p=0.007).ConclusionsCHD males with good social support and good academic performance have a better psychosocial adjustment.

Female patients and patients with poor academic performance and poor social support have worse psychosocial adjustment and perception of quality of life.

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.