Longitudinal health-related quality of life assessment in children with congenital heart disease

[Abstract] Objective: Health-related quality of life (HRQoL) has become an important outcome measure for patients with congenital heart disease (CHD). The aim of this study was to evaluate the natural course of HRQoL from longitudinal assessment in children with CHD. Patients and Methods: From July 2014 to February 2020 this longitudinal study recruited 317 children with CHD (113 girls, 35.6%) aged 6 to 18 years (11.6 ± 2.9 years). HRQoL was assessed with the generic, self-reported and age-adapted KINDL® questionnaire. During a mean follow-up period of 2.2 ± 1.3 years, 195 patients had one HRQoL reassessment, 70 two, 40 three and 12 patients four or more re-assessment, respective. Results: Overall HRQoL at baseline was 78.7 ± 9.3. During follow-up there were no changes in HRQoL over time (0.03 [–0.01–0.07]; p = 0.195). In a linear mixed model neither CHD severity, the diagnostic subgroup, age, BMI, surgical history nor gender could be linked to a change in HRQoL during the follow-up time. Only children with higher age baseline (–0.48 [–0.85––0.11]; p = 0.010) had lower HRQoL. Same trend was seen for BMI (–0.19 [–0.41–0.03]; p = 0.099). Conclusion: Older children with CHD have significantly worse HRQoL, but they evolve similarly to younger children over time. Since no demographic or clinical variable could be linked to the course of HRQoL, it seems that individual HRQoL courses are not predictable and routine HRQoL evaluations seem to be necessary for acute decision making in clinical practice

Web-Based Motor Intervention to Increase Health-Related Physical Fitness in Children With Congenital Heart Disease: A Study Protocol

Objective: Exercise interventions are underutilized in children with congenital heart disease (CHD) especially when the primary outcome is not peak oxygen uptake. Most of the studies are restricted to a low sample size and proximity of the patients to the study centers. Now eHealth approaches bear a promising but also challenging opportunity to transmit such intervention programs to participants, and check progress and compliance from remote. This study will aim to improve health-related physical fitness (HRPF) with a 24 weeks web-based exercise intervention.Methods and Design: The current study is planned as a randomized control trial (RCT) with a crossover design and the aim to improve functional outcome measures. It also estimates adherence and feasibility in patients with CHD in this web-based exercise/motor intervention over 24 weeks. Primary outcome will be the improvement of HRPF. Secondary outcomes are, functional and structural arterial stiffness measures and health-related quality of life. Thus, 70 children from 10 to 18 years with CHD of moderate and complex severity will be recruited and allocated randomly 1:1 in two study arms after baseline testing for their HRPF, arterial stiffness measures and health-related quality of life. For 24 weeks, participants in the intervention arm will receive three weekly exercise video clips of 20 min each. Every video clip comprises 20 child-oriented exercises which have to be executed for 30 s followed by a recovery period of 30 s. Each session will start with 3–4 warming-up exercises, followed by 10–12 strength and flexibility exercises, and ending with 3–4 min of cool down or stretching tasks. Continuous video clips will be streamed from a web-based e-Learning platform. The participant simply has to imitate the execution and follow some short advices. After each session, a brief online survey will be conducted to assess perceived exertion and feasibility.Discussion: The study will help to determine the efficacy and applicability of a web-based exercise intervention in children with CHD in regard to functional outcome measures. In addition, it will outline the effectiveness of remote monitoring, which provides a cost effective approach to reach patients with CHD that are low in prevalence and often do not live in close proximity to their tertiary center.Trial Registration:https://ClinicalTrials.gov Identifier: NCT03488797

Reduction in health-related quality of life during coronavirus disease 2019 pandemic in children with congenital heart disease – Findings from self and proxy report

Objective: The aim of this study was to determine how the coronavirus disease 2019 (COVID-19) pandemic affects the health-related quality of life (HRQoL) of children and adolescents with congenital heart disease (CHD), as well as how the parents perceive the HRQoL of their children. Patients and Methods: HRQoL was assessed by the KINDL® questionnaire during the COVID-19 pandemic and compared to recent questionnaire data of children of the Functional Outcome in children and adolescents with congenital heart disease (FOOTLOOSE) study. From May 27 to June 29, 2020, 160 children with various CHD (15.2 ± 2.5 years, 62 girls, age range: 10–18 years) completed this re-assessment of HRQoL. Results: HRQoL in children with CHD was significantly lower during the COVID-19 pandemic compared to before in total KINDL® score (by −2.1 ± 12.3, P = 0.030), and the subscales emotional well-being (by −5.4 ± 1.2, P < 0.001) and friends (by −4.5 ± 1.7, P = 0.009). Parents of children with CHD rate the HRQoL in total KINDL® score (mean difference: 3.9 ± 1.2, P = 0.002), and the subscales family (mean difference: 8.8 ± 1.7 standard estimate error [SEE], P < 0.001) and friends (mean difference: 7.6 ± 2.2 SEE, P < 0.001) even worse than their children. Only moderate degree of agreement was found between most of the sub-categorical HRQoL assessment of children with CHD and their parents. Conclusions: The COVID-19 pandemic had a negative impact on HRQoL in children and adolescents with CHD and their families. The psychological concerns of children with CHD and their families need special consideration by health-care providers during the COVID-19 pandemic

Diminished Endothelial Function but Normal Vascular Structure in Adults with Tetralogy of Fallot

The life expectancy of patients with Tetralogy of Fallot (ToF) has increased in recent years. As a result, other risk factors with later onset in life are in the focus of patient care. Endothelial function is an early indicator of cardiovascular risk and was investigated along further structural vessel properties. A total of 17 patients (41.7 &plusmn; 7.1 years, 8 women) with Tetralogy of Fallot were 1:2 matched for sex with 34 (38.9 &plusmn; 8.1 years, 16 women) healthy volunteers. Participants received an assessment of their endothelial function and a structural assessment of the aorta. Patients with ToF showed a reduced endothelial function determined by reactive hyperaemia index after adjusting for age, weight and height (ToF: 1.55 &plusmn; 0.31 vs. controls: 1.84 &plusmn; 0.47; p = 0.023). No differences in carotid intima-media thickness (cIMT) between the ToF and healthy controls (ToF: 0.542 &plusmn; 0.063 mm vs. controls: 0.521 &plusmn; 0.164 mm; p = 0.319) were found. Patients with ToF had reduced vascular function compared to healthy subjects. As the structural component is not affected, endothelial dysfunction seems not to have yet manifested itself as a morphological change. Nevertheless, long-term management of these patients should include vascular parameters

Health-Related Physical Fitness and Quality of Life in Children and Adolescents With Isolated Left-to-Right Shunt

Objective: Atrial (ASD) and ventricular septal defects (VSD) represent the most common congenital heart defects (CHD) and are considered simple and curable. This study investigates long-term functional outcomes in children with such defects. Patients and Methods : We examined 147 patients (74 girls, 12.1 +/- 3.5 years) with isolated shunts (ASD: 54%, VSD: 46%) for their Health-Related Physical Fitness (HRPF) and Health-Related Quality of Life (HRQoL). Native condition was present in 58 patients, interventional closure of the defect was performed in 42 and surgical closure in 47. For comparison, a healthy control group (CG) of 1,724 children (48.9% girls, 12.8 +/- 2.8 years) was recruited within two recent school projects. Results: After adjustment for age and sex, children with ASD and VSD presented lower HRPF (z-score healthy peers: 0.02 +/- 0.73, ASD: -0.41 +/- 0.73, p < 0.001; VSD: -0.61 +/- 0.73, p < 0.001) then healthy peers. Transferred into percentiles, VSD were on the 26th and ASD on the 34th percentile of the healthy peers. HRQoL did not differ between peers and CHD with isolated shunts (healthy peers: 76.1 +/- 9.7, ASD: 76.2 +/- 9.9, p = 0.999; VSD: 78.7 +/- 9.7, p = 0.316). Regarding the surgical history of the shunts (native, percutaneously treated, surgically treated), there were also no difference in-between these three states, nor differed HRPF and HRQoL in-between gender. Conclusions: Children with ASD or VSD have impaired HRPF but normal HRQoL. Early childhood sports promotion could be a good measure to counteract these restrictions in HRPF at an early stage