Resilience in children with congenital heart disease: a comparative study with health counterparts.

OBJECTIVE: Resilience is a complex, yet rather unexplored topic in patients with congenital heart disease (CHD). The goal of this study was to assess and compare resilience in children with CHD with healthy controls during the COVID-19 pandemic. DESIGN AND PATIENTS: From June 2020 to June 2021, 124 children with various CHDs (14.6±2.1 years, 49 girls) and 124 matched healthy controls (14.8±2.0 years, 49 girls) completed the Resilience Scale-11 short version. RESULTS: Resilience was significantly reduced in children with CHD compared with healthy controls (CHD: 59.0±10.0 vs healthy controls: 64.4±6.5, p<0.001). That reduction was prominent in all CHD subgroups except those with left heart obstruction (aortic stenosis and coarctation of the aorta) and patients with transposition of the great arteries. Complex CHD had the lowest resilience of 57.6±8.4 (p<0.001) after adjusting for age and sex according to group differences. There was no difference between native CHD and CHD with open-heart surgery (native: 59.5±12.2 vs surgery: 58.8±9.3, p=0.758). CONCLUSIONS: Resilience was reduced in children and adolescents with CHD compared with healthy peers during the COVID-19 pandemic. Children with complex severity appeared to be particularly affected. These findings emphasise continued efforts to provide a holistic and multidisciplinary approach in medical aftercare of these patients and their families.

Psychosocial well-being in postpartum women with congenital heart disease.

Background: Improved treatment options for congenital heart disease (CHD) lead to a growing number of women with CHD at reproductive age. Due to physical and psychological burden, pregnancies in women with CHD often count for high-risk. Resulting emotional distress can adversely impact pregnancy, motherhood and fetal health. The present study aims to retrospectively investigate mental outcomes and indices of adjustment in women with CHD before, during and after pregnancy. The novel concept of illness identity is applied to explain how patients experience and integrate their CHD into their identities. Methods: Patient-reported outcome measures on mental functioning and illness identity were assessed in a sample of 121 postpartum women with CHD [mean age: 42.7±9.2 (range, 27-81) years] at the German Heart Centre Munich between August and November 2021 in a cross-sectional design. Descriptive analyses, correlations and linear regression models were calculated. Results: Retrospectively assessed prevalence of emotional distress before giving birth was high (47.0%) and peaked shortly after childbirth in terms of elevated symptoms of postpartum depression and trauma. During the course of maternity, emotional distress decreased significantly (24.1%, P<0.001). Overall, postpartum women demonstrated high scores in functional illness identity states (i.e., acceptance and enrichment) and low scores in dysfunctional states (i.e., rejection and engulfment). CHD severity was not directly associated with mental outcomes (P>0.05), whereas maternal cardiovascular risk, according to the WHO classification, was significantly associated with a higher prevalence of postpartum trauma (t=2.485, P=0.015). Conclusions: Postpartum mental health problems, such as (postpartum) depression, anxiety, and posttraumatic stress can become a serious burden which might be detrimental to the mother's well-being and her infant's development. Present findings emphasise the urgent need for a holistic approach focusing on pregnant women with CHD starting at the prepartum stage to prevent adverse consequences and promote maternal well-being. Illness identity might become an important target construct for clinical practice as it may positively and enduringly influence mental well-being of pregnant women with CHD.

Move more - be happier? physical activity and health-related quality of life in children with congenital heart disease.

OBJECTIVE: This cross-sectional study aimed to determine whether there is an association between objectively assessed physical activity (PA) and health-related quality of life (HRQoL) in children with CHD. PATIENTS AND METHODS: From September 2017 to January 2021, 343 children with CHD (12.1 ± 3.3 years, 135 girls) provided valid PA data after a 7-day objective PA assessment. PA was evaluated as average daily steps and moderate-to-vigorous physical activity (MVPA) minutes assessed via wearable bracelet Garmin vivofit Jr. These children also completed the KINDL - a 24 Likert-scaled item questionnaires assessing HRQoL in the six dimensions physical well-being, emotional well-being, self-esteem, family, friends and everyday functioning. RESULTS: Daily Steps (r = 0.166, P = .003) and daily MVPA minutes (r = 0.134, P = .017,) were both correlated to total KINDL score. Furthermore, both steps and MVPA were associated with the subscales physical well-being (steps: r = 0.165 p=.003; MVPA: r = 0.129, P = .022), friends (steps: r = 0.210, P < .001, MVPA: r = 0.179, P = .001), steps, and to everyday functioning (r = 0.142, P = .012). Logistic regression showed each MVPA minute increase conferred to a 1% increase in reporting better HRQoL (OR: 1.009 [95% CI: 1.002 - 1.017], P = .019). CONCLUSIONS: PA was positively associated with HRQoL in children with CHD. Patients who move more are more likely to report better HRQoL. While the magnitude of this association needs to be further understood, continuous encouragement towards more PA seems to be crucial in a holistic approach to medical aftercare in children with CHD.

Inspiratory muscle training did not improve exercise capacity and lung function in adult patients with Fontan circulation: A randomized controlled trial.

BACKGROUNDS: Patients with Fontan circulation have no subpulmonary ventricle and a passive pulmonary perfusion. Considerable percentage of the pulmonary blood flow is driven by pressure shift due to respiration. Impairments in respiratory musculature strength are associated with a reduced exercise capacity. This study investigated the effect of a daily six months inspiratory muscle training (IMT) on exercise and lung capacity in adult Fontan patients. METHODS: After a lung function and cardiopulmonary exercise test (CPET), 42 Fontan patients (50% female; 30.5 ± 8.1 years) were randomized into either an intervention group (IG), or a control group (CG). The IG performed a telephone-supervised, daily IMT of three sets with 10-30 repetitions for six months. RESULTS: After six months of IMT, the IG did not improve in any exercise and lung capacity parameter compared to CG. VO2peak (ΔVO2peak: IG: 0.05 [-1.53; 1.33] ml/kg/min vs. CG: -0.50 [-1.20; 0.78] ml/kg/min; p = .784) and FVC (ΔFVC: IG: 0.07 [-0.16; 0.22] l vs. CG:-0.05 [-0.24; 0.18] l; p = .377) remained unchanged, while FEV1 trended to improve (ΔFEV1: IG: 0.05 [-0.07; 0.13] l vs. CG: -0.10 [-0.19; 0.03] l; p = .082). Only oxygen saturation at rest improved significantly (ΔSpO2: IG: 1.50 [-0.25; 3.00] % vs. CG: -0.50 [-1.75; 0.75] %; p = .017). CONCLUSIONS: A daily six months IMT did not improve exercise and lung capacity and lung volumes in Fontan patients.

Overweight and obesity: an emerging problem in patients with congenital heart disease.

Due to technological and medical advances the population of adults with congenital heart disease (ACHD) is constantly growing. Worldwide, congenital heart disease (CHD) affects 1.35-1.5 million children each year and the number of ACHD meanwhile exceeds the number of CHD children. It has been found that a substantial number of ACHD present problematic health behaviors, such as physical inactivity and bad nutritional habits. Recent studies document alarming rates of overweight and obesity among CHD patients which may consequently lead to further health complications in this population. The present article focuses on the distinct psychosocial effects resulting from the diagnosis of CHD and their impact on developing disordered eating patterns and excess weight. It seeks to identify unique risk factors and relevant explanations associated with the increasing prevalence of obesity among CHD patients. This review suggests a vital need to establish clinical guidelines for nutrition and weight management in this patient population as part of a holistic treatment approach.

Current research status on the psychological situation of parents of children with congenital heart disease.

Congenital heart diseases (CHD) are a leading cause of morbidity in children with a high impact on the psychological health of parents. Possible short-term and long-term psychological problems among parents are addressed in the current paper. The diagnosis of CHD paired with subsequent surgical and interventional treatment and prolonged hospital stays cause acute psychological distress and can lead to posttraumatic stress disorders (PTSD). As the disease course progresses, the impact on parents' health tends to decrease, but the risk of developing long-term psychological issues remains high. Studies have focused mainly on stress and other distressing symptoms without explicitly addressing the effects of a CHD diagnosis on the family system. Since the social environment may play an important role in parent's life, it may be useful to conduct studies to address these issues. In particular, the psychological situation of the father and the impact of the child's disease on the different dimensions of the father's life, such as parenting skills and influences on the parental relationship, have been largely neglected. Recent research has also disregarded the impact of CHD on siblings of the affected child. Research on chronic diseases in general has shown that the children's age and severity of the disease are related to an increased level of stress. Given the severity of CHD, anxiety and depression were higher in parents with children with more severe conditions. In addition, the results suggest that a positive construction of the parent-child relationship (attachment and bonding) is impaired, especially in mothers. Mothers reported worries and concerns about the challenging tasks they would face after learning about their child's CHD and how they can deal with their child's needs. It has also been shown that the child's illness has a negative impact on the whole family system, including the parent's relationship. Impairments on the parental relationship were perceived differently among mothers and fathers. Thus, there is high need for major changes to be identified, developed and implemented in the psychological care of parents with chronically ill children. So far, research has focused more on the psychological status of parents with chronically ill children, but less research has closely examined the effects of a child's CHD on its parent's mental health even though there is a high demand in additional support. A holistic treatment approach should include professional parental support, especially during children's hospitalization, information on the home care resources and services (especially respite services) and psychological support for parents.

Current research status on the psychological situation of adults with congenital heart disease.

Due to technological and medical advances the population of adults with congenital heart disease (ACHD) is growing. Worldwide, congenital heart disease (CHD) affects 1.35-1.5 million children each year and more than 90% reach adulthood. Given the heterogeneity of CHD, survivors are faced with not only complex medical but also psychological challenges which may manifest in mental health problems, such as depression, anxiety and posttraumatic stress disorder. This review focuses on the emotional dimension of CHD. More precisely, it summarizes the present state of research on the prevalence of emotional distress in ACHD. Theoretical models provide a framework for possible explanations of mental health issues in ACHD. Additionally, the review examines the relation between psychological processes and overall health considering the latest scientific findings on coping with chronic illness (illness identity). There is still insufficient knowledge on the psychosocial treatment of mental health issues in the growing population of ACHD. This review suggests a vital need to further investigate the psychological situation of ACHD on a large-scale basis in order to establish a holistic treatment approach to accommodate the patients' special needs.