Background— The goal of this statement was to review the available literature on surveillance, screening, evaluation, and management strategies and put forward a scientific statement that would comprehensively review the literature and create recommendations to optimize neurodevelopmental outcome in the pediatric congenital heart disease (CHD) population.

Methods and Results— A writing group appointed by the American Heart Association and American Academy of Pediatrics reviewed the available literature addressing developmental disorder and disability and developmental delay in the CHD population, with specific attention given to surveillance, screening, evaluation, and management strategies. MEDLINE and Google Scholar database searches from 1966 to 2011 were performed for English-language articles cross-referencing CHD with pertinent search terms. The reference lists of identified articles were also searched. The American College of Cardiology/American Heart Association classification of recommendations and levels of evidence for practice guidelines were used. A management algorithm was devised that stratified children with CHD on the basis of established risk factors. For those deemed to be at high risk for developmental disorder or disabilities or for developmental delay, formal, periodic developmental and medical evaluations are recommended. A CHD algorithm for surveillance, screening, evaluation, reevaluation, and management of developmental disorder or disability has been constructed to serve as a supplement to the 2006 American Academy of Pediatrics statement on developmental surveillance and screening. The proposed algorithm is designed to be carried out within the context of the medical home. This scientific statement is meant for medical providers within the medical home who care for patients with CHD.

Conclusions— Children with CHD are at increased risk of developmental disorder or disabilities or developmental delay. Periodic developmental surveillance, screening, evaluation, and reevaluation throughout childhood may enhance identification of significant deficits, allowing for appropriate therapies and education to enhance later academic, behavioral, psychosocial, and adaptive functioning.

Neurodevelopmental outcomes in children with congenital heart disease: evaluation and management: a scientific statement from the American Heart Association.

Background Today most patients with congenital heart disease survive childhood to be cared for by adult cardiologists. The number of physicians that should be trained to manage these lesions is unknown because we do not know the number of patients. Methods To answer this question, the expected numbers of infants with each major type of congenital heart defect born in each 5-year period since 1940 were estimated from birth rates and incidence. The numbers expected to survive with or without treatment were estimated from data on natural history and the results of treatment. Finally, lesions were categorized as simple, moderate, or complex, based on the amount of expertise in management needed for optimal patient care. Results From 1940 to 2002, about 1 million patients with simple lesions, and half that number each with moderate and complex lesions, were born in the United States. If all were treated, there would be 750,000 survivors with simple lesions, 400,000 with moderate lesions, and 180,000 with complex lesions; in addition, there would be 3,000,000 subjects alive with bicuspid aortic valves. Without treatment, the survival in each group would be 400,000, 220,000, and 30,000, respectively. The actual numbers surviving will be between these 2 sets of estimates. Conclusions Survival of patients with congenital heart disease, treated or untreated, is expected to produce large numbers of adults with congenital disease, and it is likely that many more adult cardiologists will need to be trained to manage moderate and complex congenital lesions.

Prevalence of congenital heart disease

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

https://www.zora.uzh.ch/id/eprint/25302/2/25302_Vpdf.pdf

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

Aims The aim of this study is to compare self-reported health-related quality-of-life (HRQoL) with the objective of exercise performance in patients with congenital heart disease (CHD) according to diagnosis.

Methods and results 564 patients (255 females, 14–73 years) with various CHD (62 shunt, 66 left heart obstruction, 33 PS/PR, 47 Ebstein, 96 Fallot, 98 TGA after atrial switch, 38 other TGA, 31 Fontan, 32 palliated/native cyanotic, 61 others) and a group of 53 healthy controls (18 females, 14–57 years) completed a QoL questionnaire (SF-36) and performed a symptom-limited cardiopulmonary exercise test. Despite several limitations at exercise ( P = 1.30 × 10−33), patients only reported reductions in HRQoL concerning physical functioning ( P = 4.41 × 10−15) and general health ( P = 6.17 × 10−5) and not psychosocial aspects. This could be confirmed in all diagnostic subgroups. Correlation to peak oxygen uptake was found in physical functioning ( r = 0.435, P = 1.72 × 10−27) and general health ( r = 0.275, P = 3.79 × 10−11). However, there was severe overestimation of physical functioning in most patients when compared with actual exercise test results.

Conclusion Patients with CHD rate their HRQoL impaired only in physical functioning and general health and not in any psychosocial aspect. Self-estimated physical functioning poorly predicts actual exercise capacity.

Self-estimated physical functioning poorly predicts actual exercise capacity in adolescents and adults with congenital heart disease

Objective: To assess health-related quality of life (HRQoL), depressed mood, and self-esteem in adolescents with heart disease and compare them with age-matched healthy adolescents (control group). Methods: Ninety adolescents (aged 12 to 18 years with congenital or acquired heart disease) and 87 controls completed the HRQoL (TAAQOL-CHD), Center for Epidemiologic Studies Depression scale, and Rosenberg self-esteem questionnaires. Relevant medical details were collected. The patients and their parents were asked to rate their perceived severity of heart disease. Results: Adolescents with severe heart disease reported higher levels of depressed mood and lower self-esteem than did adolescents with moderate and mild heart disease and age-matched healthy controls. Adolescents with severe heart disease also reported worse HRQoL than those with moderate and mild disease. According to the multiple regression analysis, 44% of variance of HRQoL was explained by the study variables. Disease severity alone explained 11% of the variance, but when entered with the other study variables, depressed mood, self-esteem, and adolescents’ perceived severity of disease were the only significant contributors to the explained variance of HRQoL. An exploratory mediation analysis, using the Sobel test, was therefore applied, and it showed that depressed mood and perceived disease severity, but not self-esteem, mediated the relationship between disease severity and HRQoL. Conclusions: Lower HRQoL was found in adolescents with severe heart disease. Psychosocial factors have a significant effect on the psychological state of adolescents, and they should be addressed and treated.

Quality of life, depressed mood, and self-esteem in adolescents with heart disease.

Cognitive achievement, behavioural problems, and various dimensions of personality were assessed in 48 male and female patients with congenital heart disease (CHD) aged from 12 to 16 years in comparison to a control group. The CHD group showed a lower speed of cognitive processing but seemed to have less state-anxiety and to possess a higher superego strength. Male adolescents with CHD presented with a reduced perceived capacity and self-esteem. This was not true for adolescent girls with CHD. The negative self-concept of boys with CHD may be partly explained by reduced physical ability interfering with peer relationships.

Self-Concept in Male and Female Adolescents with Congenital Heart Disease

Im Rahmen einer Evaluationsstudie wurden alle stationaren Patienten innerhalb des Zeitraumes eines Jahres in bezug auf Problemstellung, Diagnose, Behandlung und erreichte Veranderungen im prospektiven Verlauf erfast. Die Studie stellt damit einen Beitrag zur Qualitatssicherung dar und geht vor allem der Frage nach, unter welchen Bedingungen das angebotene Behandlungskonzept unseren Patienten hilfreich sein kann. Ergebnisqualitat und Leistungsdokumentation stehen im Mittelpunkt. Die Ergebnisse zeigen, das Evaluationsstudien durch die multifaktorielle Bedingtheit kinder- und jugendpsychiatrischer Storungen sich in ihren Methoden sehr nah an dem subjektiven Krankheitserleben und dadurch ausgeloste subjektiv erlebte Belastungen der Kinder und ihrer Familien orientieren mussen und Veranderung sowie die Operationalisierung von Behandlungserfolg ebenso an diesen Parametern festzumachen sind. 
In a prospective study individual symptoms, diagnosis, treatment and goal-attainment were
assessed in the total sample of in-patients during a one year period. As a contribution to
quality-assurance we investigated the conditions under which the provided treatment can be
helpful for our patients. The study focused on the quality of treatment and the documentation
of diagnostic and treatment services provided. The results show that methodologies used
in evaluation studies have to adapt to the subjective experience of individual disorders and
the therefore resulting distress children and their families suffer from. Improvements and the
operationalization of outcome-quality have also to be measured by these parameters.

/pdf/prozes-und-ergebnisqualitat-in-der-stationaren-behandlung-1o2xihziek.pdf

Prozeß- und Ergebnisqualität in der stationären Behandlung: ein Beitrag zur Evaluation und Qualitätssicherung in der Kinder- und Jugendpsychiatrie

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Self-Concept in Male and Female Adolescents with Congenital Heart Disease

Prozeß- und Ergebnisqualität in der stationären Behandlung: ein Beitrag zur Evaluation und Qualitätssicherung in der Kinder- und Jugendpsychiatrie