[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.

[Psychosocial adjustment, psychiatric morbidity and quality of life in adolescents and young adults with congenital heart disease]. / Ajustamento psicossocial, morbilidade psiquiátrica e qualidade de vida em adolescentes e jovens adultos com cardiopatias congénitas.

OBJECTIVES: We aimed to study the psychosocial adjustment (PSA), psychiatric morbidity and quality of life of adolescents and young adults with congenital heart disease (CHD) to determine which demographic and clinical variables negatively affect adjustment and which increase resilience. METHODS: The study included 74 patients with CHD, 41 male and 33 female, aged between 12 and 26 years (mean 18.76±3.86). Demographic information and a complete clinical history were obtained. The participants were interviewed regarding social support, family environment, self-image and physical limitations. A standardized psychiatric interview was conducted, and self-report questionnaires were administered for assessment of PSA (Youth Self Report and Adult Self Report) and quality of life (World Health Organization Quality of Life - Short Version). A caregiver completed an observational version of the PSA questionnaire (Child Behavior Checklist or Adult Behavior Checklist). RESULTS: Female participants showed more feelings of anxiety and depression (U=952.500; p=0.003), thought problems (U=929.500; p=0.005) and aggressive behavior (U=999.000; p=0.000). They also showed a higher rate of psychopathology. Patients with complex forms of CHD reported more thought problems (U=442.000; p=0.027) and internalization (U=429.000; p=0.021). Compared to the Portuguese population as a whole, participants showed better quality of life in the domains of social relationships (t=2.333; p=0.022) and environment (t=3.754; p=0.000). Patients who had undergone surgery had worse quality of life in physical terms (t=-1.989; p=0.050), social relationships (t=-2.012; p=0.048) and general quality of life (U=563.000; p=0.037), compared to those who were not operated. Better social support was associated with better quality of life in physical terms (t=3.287; p=0.002) and social relationships (t=3.669; p=0.000). Better school performance was also associated with better overall quality of life (U=457.000; p=0.046), less withdrawn behavior (U=812.500; p=0.031), fewer feelings of anxiety and depression (U=854.000; p=0.009), fewer attention problems (U=903.500; p=0.001), and lower scores for internalization (U=817.000; p=0.029) and externalization (U=803.500; p=0.042). Physical limitations had a detrimental effect on quality of life (U=947.500; p=0.001). DISCUSSION: Female participants were more prone to worse psychological adjustment and to psychopathology. Patients with complex forms of CHD showed worse PSA, as they need regular care, which restricts social contact with peers and family and integration in school and leisure activities. Patients who had undergone surgery showed worse quality of life as they often have long hospital stays, during which social activities are restricted, making it more difficult for them to develop a good social support network. They require close medical care, and the restrictions on their activities may be life-limiting. Their sense of survival may also be threatened. CONCLUSIONS: Patients with CHD appear to be more prone to psychopathology and female patients are more likely to show worse PSA. Social support was shown to play a crucial role in buffering stress and promoting patients' adjustment.

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.

Quality of life experienced by adolescents and young adults with congenital heart disease.

This study aimed to assess the quality of life (QOL) experienced by adolescents and young adults with congenital heart disease (CHD) and to determine which factors negatively affect adjustment and which factors increase resilience. The participants in the study were 74 patients with CHD (41 males and 33 females) ranging in age from 12 to 26 years (mean age, 18.76 ± 3.86 years). Demographic information and a complete clinical history were obtained. The participants were interviewed regarding topics such as social support, family educational style, self-image, and physical limitations. They responded to questions in a standardized psychiatric interview (SADS-L) and completed a self-report questionnaire (WHOQOL-BREF) for assessment of QOL. Compared with the Portuguese population as a whole, the study patients had better QOL, especially with regard to the environmental dimension (t = 3.754; P = 0.000) and social relationships (t = 2.333; P = 0.022). Patients who had undergone surgery experienced poorer QOL in the physical dimension (t = -1.989; P = 0.050), in social relationships (t = -2.012; P = 0.048) and overall (Mann-Whitney U = 563.000; P = 0.037). Social support played a positive role in the QOL of the patients, both in the physical dimension (t = 3.287; P = 0.002) and in social relationships (t = 3.669; P = 0.000). A higher school achievement also was associated with higher levels of QOL overall (Mann-Whitney U = 457.000; P = 0.046) as well as in the physical (t = 2.045; P = 0.045) and environmental (t = 2.413; P = 0.018) dimensions. Physical limitations had a detrimental impact on general QOL (Mann-Whitney U = 947.500; P = 0.001) and on the physical (t = -2.910; p = 0.005) and psychological (t = -2,046; P = 0.044) dimensions. Patients with CHD tended to perceive QOL as better when their social networks were supportive.