9 research outputs found

    Tetralogy of Fallot

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    Tetralogy of Fallot is a congenital cardiac malformation that consists of an interventricular communication, also known as a ventricular septal defect, obstruction of the right ventricular outflow tract, override of the ventricular septum by the aortic root, and right ventricular hypertrophy

    Psychological adjustment and quality of life in children and adolescents following open-heart surgery for congenital heart disease: a systematic review

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    BACKGROUND: Children with congenital heart defects (CHD) requiring open-heart surgery are a group at high risk for health-related sequelae. Little consensus exists regarding their long-term psychological adjustment (PA) and health-related quality of life (QoL). Thus, we conducted a systematic review to determine the current knowledge on long-term outcome in this population. METHODS: We included randomized controlled trials, case control, or cohort studies published between 1990-2008 evaluating self- and proxy-reported PA and QoL in patients aged between two and 17 years with a follow-up of at least two years after open heart surgery for CHD. RESULTS: Twenty-three studies assessing psychological parameters and 12 studies assessing QoL were included. Methodological quality of the studies varied greatly with most studies showing a moderate quality. Results were as follows: (a) A considerable proportion of children experienced psychological maladjustment according to their parents; (b) studies on self-reported PA indicate a good outcome; (c) the studies on QoL suggest an impaired QoL for some children in particular for those with more severe cardiac disease; (d) parental reports of psychological maladjustment were related to severity of CHD and developmental delay. CONCLUSION: A significant proportion of survivors of open-heart surgery for CHD are at risk for psychological maladjustment and impaired QoL. Future research needs to focus on self-reports, QoL data and adolescents

    Patient characteristics of women and men cared for during the first 10 years at an inpatient hospice ward in Sweden

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    The hospice philosophy with focus on the patient's autonomy and the ideal of a good death are the overall objectives of palliative care. Often-raised questions, when discussing hospice, are for which of the incurable ill inpatient hospice is the most optimal care alternative together with who are making use of hospice. The aim of the present study was to describe patient characteristics such as age, marital status, diagnosis, referral source and length of stay (LoS) in relation to gender, during the first decade at an inpatient hospice ward (1992-2001). Data, obtained from medical register, were analysed by using descriptive statistics and the chi-square test. The number of patients was 666 women and 555 men, and most of them were elderly. In some respects significant differences were observed between women and men. More women than men were single, had cancer with relatively rapid trajectory and were referred from the oncology department. Men, more often than women, were diagnosed with cancers with a somewhat longer trajectory. Despite the longer trajectory, the LoS was shorter for men (median =13 days) than for women (median = 17 days). The most frequent referral source was hospital, though men, younger men in particular, were more often referred from home-based hospice care than women. During the last 3 years self-referrals were documented. Self-referrals can be seen as one distinct expression from a standpoint of one's own active choice compared with other referrals. Altogether, self-referrals were less frequent among women than men but in relation to age, self-referrals were more common among the youngest (&lt;60 years) and the oldest women (&gt;85 years) than men in the same age groups. Further studies illuminating a gender perspective can broaden the understanding of what these differences may imply for women and men.</p

    Long-term behavior and quality of life after corrective cardiac surgery in infancy for tetralogy of Fallot or ventricular septal defect.

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    The objective of this study was to evaluate behavior and quality of life in children after corrective cardiac surgery in infancy. Twenty cyanotic (tetralogy of Fallot) and 20 acyanotic children (ventricular septal defect), operated at a mean age of 0.7 years with deep hypothermic circulatory arrest (DHCA) and low-flow cardiopulmonary bypass (CPB), were assessed at a mean age of 7.4 years by the Child Behavior Checklist (CBCL) and the German KINDL. Test results were related to perioperative and neurodevelopmental outcome. Compared to healthy children and not significantly different between the groups, internalizing and externalizing problems were elevated, school performance and total competence were reduced, and self- and parent-reported quality of life was not reduced. Parent-reported problems and reduced physical status were correlated with longer durations of DHCA and CPB. Internalizing and externalizing problems, reduced school competence, and reduced self-esteem were associated with reduced endurance capacity. Externalizing problems were related to reduced gross motor function. Poor school competence was related to reduced intelligence and academic achievement. Children with preoperative hypoxemia in infancy due to cyanotic cardiac defects are not at significantly higher risk for behavioral problems and reduced quality of life than those with acyanotic heart defects. The risk of long-term psychosocial maladjustment after corrective surgery in infancy is increased compared to that for normal children and related to the presence of neurodevelopmental dysfunction

    Health-Related Quality of Life in Pediatric and Adult Patients with Congenital Heart Disease

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