Psychosocial well-being and quality of life in siblings of children with congenital heart disease: A systematic review.

Congenital heart disease (CHD) is a major global health problem. Until recently, the siblings of this group did not receive much attention. This review, conducted from November 2019 to October 2020, aims to summarize knowledge about psychosocial well-being and quality of life (QoL), associated factors, and interventions for siblings of children with CHD. Systematic searches were conducted in PubMed, PsycINFO, PsycARTICLES, Web of Science via EBSCOhost, and CENTRAL. Twelve articles were included. Results showed that psychosocial well-being was impaired in 14% to 40% of siblings. Negative impact of illness was highest for CHD siblings compared to siblings of children with cancer, cystic fibrosis, or diabetes. QoL was impaired in up to one-third. Siblings of children with CHD and cancer rated their QoL lower than those of siblings of children with cystic fibrosis or type-1 diabetes. Associated factors were sibling age, gender, socioeconomic status, miscarriage, previous sibling death, visibility of illness, and severity of condition. Only one of two interventions focused on siblings of CHD children. Although data are scarce and inhomogeneous, it indicates that siblings of CHD children suffer from lower psychosocial well-being and QoL than siblings of children with other chronic conditions. Interventions to improve their situation should be developed.

Physical Activity Among Children With Congenital Heart Defects in Germany: A Nationwide Survey.

Objective: In children with congenital heart defects (CHD), a sedentary lifestyle should be avoided and usually WHO recommendations on physical activity (PA) are supposed to be followed. In order to obtain representative data of the actual amount of PA (and potential influencing factors) in children with CHD we performed a nationwide online survey. Methods: All patients aged 6-17 years registered in the German National Register for CHD were contacted by email and asked to participate in the survey using the comprehensive questionnaire of the "Motorik-Modul" from the German Health Interview and Examination Survey for Children and Adolescents (KiGGS), thus allowing the comparison with a representative age-matched subset of 3.385 participants of the KiGGS study. The questionnaire for CHD-patients was amended by specific questions regarding medical care, sports recommendations and PA restrictions. Results: Complete datasets of 1.198 patients (mean age of 11.6 ± 3.1 years) were available for evaluation. Compared to the reference group, CHD patients significantly less frequently reached the WHO recommended level of 60 min of daily PA (8.8 vs. 12%; p < 0.001). Enjoyment in sports was almost equally distributed across CHD and reference groups, and strongly correlated with the level of PA (r = 0.41; p < 0.001). Remarkably, 49.2% of children with complex CHD, 31.7% with moderate, and even 13.1% with simple CHD were advised by their physician to restrict PA. Conclusions: According to this nationwide survey, PA is markedly reduced in children with CHD. An important reason for this might be an unexpected high rate of physician-recommended restrictions on levels of PA.

Transition in Patients with Congenital Heart Disease in Germany: Results of a Nationwide Patient Survey.

BACKGROUND: A growing number of adults with congenital heart disease (ACHD) pose a particular challenge for health care systems across the world. Upon turning into 18 years, under the German national health care system, ACHD patients are required to switch from a pediatric to an adult cardiologist or an ACHD-certified provider. To date, reliable data investigating the treatment situation of ACHD patients in Germany are not available. MATERIALS AND METHODS: An online survey was conducted in collaboration with patient organizations to address the life situation and the conditions of health care provision for ACHD patients in Germany. ACHD patients were recruited from the database of the National Register for Congenital Heart Defects (NRCHD) and informed about the survey via email, websites, and social networks. A total of 1,828 ACHD patients (1,051 females) participated in this study. The mean age was 31.7 ± 11.7 years. Participants were surveyed about treating physicians and the institution mainly involved in the treatment of their CHD. In addition, participants were asked questions to assess the level of trust toward their treating physician and their familiarity with the term "ACHD-certified provider." RESULTS: Among the surveyed patients, 25.4% stated that they attended a specific ACHD clinic at a heart center regularly, 32.7% were treated in a private practice setting by a pediatric cardiologist, 32.4% in a private practice (adult) cardiology setting, and 9.5% were treated by an "other physician." Only 24.4% of the male and 29.7% of the female ACHD patients were familiar with the term "ACHD-certified provider." CONCLUSION: The transfer from pediatric cardiology to ACHD care requires further attention as many adult patients have not transferred to certified ACHD providers. The question of whether ACHD patients in Germany are offered consistent and adequate care should also be investigated in more detail. The answers regarding the ACHD certification are particularly disappointing and indicative of a large information gap and inadequate education in clinical practice.

Is having a job a protective factor? Employment status and state of medical care as subjectively perceived by adults with CHD in Germany.

BACKGROUND: Most patients born with CHD nowadays reach adulthood, and thus quality of life, life situation, and state of medical care aspects are gaining importance in the current era. The present study aimed to investigate whether patients' assessment depends on their means of occupation. The findings are expected to be helpful in optimising care and for developing individual treatment plans. METHODS: The present study was based on an online survey conducted in cooperation with patient organisations. Participants were recruited from the database of the German National Register for Congenital Heart Defects. In total, 1828 individuals (777 males, 1051 females) took part. Participants were asked to rate aspects such their state of health on a six-tier scale (1=worst specification). Response behaviour was measured against the background of occupational details. RESULTS: Training for or pursuing a profession was found to be significantly associated with participants' rating of five of the six examined aspects (p<0.05). Sex seemed to play an important part in four of the six aspects. CONCLUSIONS: An optimal treatment plan for adults with CHD should always consider aspects such as sex and employment status. To work out such an optimal and individual treatment plan for each adult CHD patient, an objective tool to measure patients' actual CHD-specific knowledge precluding socially accepted response bias would be very useful.

Catch-up growth of supine length/height of very low birth weight, small for gestational age preterm infants to adulthood.

OBJECTIVE: To analyze linear growth of very low birth weight (VLBW), small for gestational age (SGA; < 10th percentile) preterm infants from birth as to catch-up or no catch-up growth. STUDY DESIGN: VLBW SGA preterm infants (n = 46) with primarily symmetric intrauterine growth restriction from the Bonn Longitudinal Study were compared with 62 appropriate for gestational age (AGA) VLBW preterm and 73 term infants and with their parents. RESULTS: Forty-six percent of VLBW SGA (21 of 46) had complete height catch-up by adult age, and most became taller than target height (TH) (15 of 21; 71%). The others did not catch up; most of them remained shorter than TH (18 of 25; 72%) after initial catch-up followed by catch-down growth. Mean adult height z-score was lower than that for birth length. Mean body mass index was similar in the catch-up and no catch-up groups (21.8 and 21.3, respectively) and lower than in the controls (23.2). Approximately 1/2 of the head circumference (HC) catch-up children achieved height catch-up as well. CONCLUSIONS: Height catch-up extended beyond age 6 years, independent of HC growth. We could not predict height catch-down or successful catch-up.

[Implementation of psychosocial care in pediatric cardiology. Results of a national survey]. / Etablierung psycho-sozialer Versorgung in der Pädiatrischen Kardiologie. Ergebnisse einer bundesweiten Befragung.

In the German health care system patient self-help groups assume growing importance. The aim of the umbrella organisation for self help groups in paediatric cardiology (Bundesverband Herzkranker Kinder e.V., BVHK) is to continuously improve comprehensive health care to children with heart diseases and their parents. One of the most important aims of the BVHK is to implement psychosocial services for inpatients. In some recent projects the BVHK has analysed the current structures of psychosocial care in German departments of paediatric cardiology. Existing structures are compared with the optimal standards of psychosocial care. Selected results of these projects are described in this article.

Catch-up growth of head circumference of very low birth weight, small for gestational age preterm infants and mental development to adulthood.

OBJECTIVE: To examine the influence of postnatal energy quotient (EQ, energy intake/kg body weight per day) on head circumference (HC) growth and mental development of very low birth weight (VLBW), small for gestational age (SGA, <10th percentile) preterm infants. STUDY DESIGN: SGA VLBW preterm infants (n = 46) with primarily symmetric intrauterine growth restriction were compared with 62 appropriate for gestational age (AGA) VLBW preterm infants and 73 term infants from the Bonn Longitudinal study. RESULTS: Twenty-seven of 46 (59%) of the SGA preterm infants showed complete HC catch-up growth by the age of 12 months, but mostly before 6 months after term (HC catch-up group). These infants had significantly higher mean EQs from day 2 to 10 than the group of 19 infants without HC catch-up (EQ, 95 vs 78). Mean EQs correlated significantly with developmental and intelligence quotients (DQ/IQ) from 18 months to 6 years. As adults, the HC of the HC catch-up group was not significantly different from that of the AGA preterm infants, the term infants, and their parents. The group without HC catch-up had smaller HC as adults. CONCLUSIONS: Our data suggest that early postnatal high-energy nutrient intake for SGA preterm infants is needed to promote HC catch-up growth and to prevent negative consequences of undernutrition.

[Self esteem of chronically ill children and adolescence exemplified by obesity and congenital heart defect]. / Das Selbstwertgefühl chronisch kranker Kinder und Jugendlicher am Beispiel Adipositas und angeborener Herzfehler.

Coping with a chronic illness challenges children and adolescents in addition to their normal developmental tasks. This double challenge probably endangers the development of a stable self-esteem. The present investigation explores the possibility whether these processes are different with respect to the kind of illness. Chronic illnesses such as obesity and congenital heart defects (CHD) serve as examples in comparing two samples (8-16 years): obesity (N = 54) as visible and partly controllable illness (with respect to the course of illness) vs. congenital heart disease (N = 56) as invisible and uncontrollable illness (with respect to the origin and course of illness). Self-esteem is measured by a scale (ALS) which focuses on the public areas "school" and "leisure time" and the private area "family". Children and adolescents with CHD (especially females) display an above-average positive self-esteem in all areas. Children and adolescents with obesity mainly display an average self-esteem, the females scoring above-average for the private area "family", the males scoring below-average for the public area "leisure time". Furthermore, leisure-time related self-esteem is significantly lower for obese than for CHD subjects. These specific relations implicate differential accentuations for intervention programs.