Living with CHD: quality of life (QOL) in early adult life.

AIMS: The aim of this study was to assess the quality of life, psychiatric morbidity, and the psychosocial adjustment of adolescents and young adults with CHD, and determine which variables play a role in buffering stress and promoting resilience and which ones have a detrimental effect; and to investigate the situation on school performance and failures, social and family support, physical limitations, and body image of these patients. METHODS: The study enrolled 137 CHD patients (79 male), with age ranging from 12 to 26 years old (M=17.60±3.450 years). The patients were interviewed regarding social support, family educational style, self-image, demographic information, and physical limitations. They responded to questions in a standardised psychiatric interview (SADS-L) and completed self-reported questionnaires for the assessment of quality of life (WHOQOL-BREF) and psychosocial adjustment (YSR/ASR). RESULTS: We found a 19.7% lifetime prevalence of psychopathology in our patients (27.6% in female and 13.9% in male). Of them, 48% had retentions in school (M=1.61 year±0.82). The perception of quality of life in CHD patients is better compared with the Portuguese population in the social relationships and environmental dimensions. However, it is worse in complex forms of CHD than in moderate-to-mild ones, in cyanotic versus acyanotic patients, in moderate-to-severe versus mild residual lesions, in patients submitted versus those not submitted to surgery, in patients with versus without physical limitations, and patients who have need for medication versus those who do not. Social support is very important in improving quality of life of patients in all dimensions as well as academic performance. CONCLUSIONS: Female patients and patients with poor academic performance and poor social support have worse psychosocial adjustment and perception of quality of life.

Impact of fetal development on neurocognitive performance of adolescents with cyanotic and acyanotic congenital heart disease.

BACKGROUND: Our aims were to evaluate the neurocognitive performance in adolescents with congenital heart disease (CHD) and to determine whether parameters of fetal development evaluated in neonates, such as head circumference, length, weight, and Apgar scores, are somehow related to their neurocognitive performance. METHODS: We evaluated 77 CHD patients (43 males) aged from 13 to 18 years old (mean = 15.04 ± 1.86), 46 cyanotic, 23 with tetralogy of Fallot (TF), 23 with transposition of the great arteries (TGA) and 31 acyanotic with ventricular septal defect (VSD) enrolled in this study. The control group included 16 healthy children (11 males) ages ranging from 13 to 18 years old (mean = 15.69 years ± 1.44 years). All assessment measures for CHD patients were once obtained in a tertiary hospital; the control group was evaluated in school. Neuropsychological assessment included Wechsler's Digit Test, direct and reverse (WDD and WDR) and Symbol Search, Rey's Complex Figure (RCF), BADS's Key Searching Test, Color-Word Stroop Test (CWS), Trail Making Test (TMT), and Logical Memory Task (LMT). We evaluated some fetal parameters, such as head circumference, weight and length assessed at birth, and neonatal parameters, such as Apgar scores at 1 and 5 minutes after birth. We also registered some surgical parameters, such as the age at first operation and the number of surgeries. RESULTS: CHD patients compared with control group showed lower scores on every test, except for logical memory task. Patients with VSD when compared with patients with TF and TGA showed better results in all neuropsychological tests, although the only significant differences were in RCF, copy (F = 4936; P = .010). Several correlations were apparent between fetal/neonatal parameters and neuropsychological abilities in each type of CHD. However, head circumference at birth stands as the main correlation with cognitive development later on in all kinds of CHD (WDD: rho = .339, P = .011; RCF, copy: rho = 0.297, P = .027; CWS, interference: rho = 0.283, P = .036; TMT-A: rho = -0.321, P = .017). We analyzed the predicting relevance of several variables to cognitive performance of adolescents with CHD and confirmed that "cyanosis" stands as the main predictor (â = -4.758; t = -2.622; P = .011). CONCLUSIONS: Adolescents with CHD have worse neuropsychological performance than the control group, mainly the cyanotic patients. Fetal circulation seems to have impact on cerebral and somatic growth, predicting cognitive impairment in adolescents with CHD.

[Long term psychosocial outcomes of congenital heart disease in adolescents and young adults].

OBJECTIVE: Congenital heart disease (CHD) is a chronic illness with a high frequency in the worldwide population, and is normally diagnosed at birth or in uterus. Because of better conditions in diagnosis and early medical and surgical treatment, patients have survival rates of 90% and go further and further in life, facing different challenges in life cycle. In this study, we tested the effects of different demographic, clinical and psychosocial variables on the perception of quality of life (QOL), on psychosocial adjustment (PSA) and psychiatric morbidity (PM) of adolescents and young adults with CHD. We aimed to evaluate QOL, PM and PSA of adolescents and young adults with CHD and to determine which variables (demographic, clinical, and psychosocial) play a role in buffering stress and promoting resilience and which ones have a detrimental effect. METHODS: The study enrolled 150 CHD patients (87 males and 63 females), 12 to 26 years (17.45±3.373 years). The participants were interviewed regarding social support, family educational style, self-image, demographic information and physical limitations. They responded to questions in a standardized psychiatric interview (SADS-L) and completed self-reports questionnaires for assessment of QOL (WHOQOL-BREF) and PSA (YSR/ASR). RESULTS: We found a 18.7% lifetime prevalence of psychopathology in our participants (25.4% in females and 13.8% in males). 57.1% had retentions in school (1.53±0.804 year). The perception of QOL of CHD patients is better compared to the Portuguese population in the social relationships, environmental, physical and general dimensions. However, it is worse in female CHD patients and patients with poor academic performance and social support as well as in patients with complex or cyanotic CHD, moderate-to-severe residual lesions and physical limitations, and undergoing surgery. All of these variables, except presence of cyanosis, are also associated to a worse PSA. CONCLUSIONS: Female patients and patients with poor academic performance and poor social support refer worse PSA and QOL.

A cohort study on psychosocial adjustment and psychopathology in adolescents and young adults with congenital heart disease.

OBJECTIVES: Our purpose was to study psychosocial adjustment and psychiatric morbidity of adolescents and young adults with congenital heart disease (CHD). DESIGN: All assessment measures were obtained on a single occasion. Clinical data was obtained through the patient's clinical records. SETTING: A teaching and tertiary care facility in Porto, Portugal. PARTICIPANTS: We 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 MEASURES: Questionnaires 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)). RESULTS: We 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). CONCLUSIONS: CHD males with good social support and good academic performance have a better psychosocial adjustment.

Long term psychosocial outcomes of congenital heart disease (CHD) in adolescents and young adults.

BACKGROUND: Congenital heart disease (CHD) is a chronic illness with a high frequency in the worldwide population, and is normally diagnosed at birth or in uterus. Because of better conditions in diagnosis and early medical and surgical treatment, patients have survival rates of 90% and go further and further in life, facing different challenges in life cycle. In this study, we tested the effects of different demographic, clinical and psychosocial variables on the perception of quality of life (QOL), on psychosocial adjustment (PSA) and psychiatric morbidity (PM) of adolescents and young adults with CHD. OBJECTIVES: We aimed to evaluate QOL, PM and PSA of adolescents and young adults with CHD and to determine which variables (demographic, clinical, and psychosocial) play a role in buffering stress and promoting resilience and which ones have a detrimental effect. METHODS: The study enrolled 150 CHD patients (87 males and 63 females), 12 to 26 years (M: 17.45±3.373 years). The participants were interviewed regarding social support, family educational style, self-image, demographic information and physical limitations. They responded to questions in a standardized psychiatric interview (SADS-L) and completed self-reports questionnaires for assessment of QOL (WHOQOL-BREF) and PSA (YSR/ASR). RESULTS: We found an 18.7% lifetime prevalence of psychopathology in our participants (25.4% in females and 13.8% in males). 57.1% had retentions in school (M: 1.53±0.804 year). The perception of QOL of CHD patients is better compared to the Portuguese population in the Social Relationships, Environmental, Physical and General Dimensions. However, it is worse in complex forms of CHD, in cyanotic patients, in moderate-to-severe residual lesions, in patients submitted to surgery and in patients with physical limitations. All of these variables, except presence of cyanosis, are also associated to a worse PSA. Social Support is very important in improving QOL of patients in all dimensions as well as academic performance. CONCLUSIONS: Female patients and patients with poor academic performance and poor social support refer worse PSA and QOL.