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Physical activity measurement via wearables in patients with congenital heart disease (CHD) was at the core of this thesis. A systematic literature review found previous studies on the topic lack quality. Three cross-sectional studies revealed that children with CHD are quite active, that active young patients have a higher likelihood to be happier, and that adult patients need to move more. Also, adult patients are less accurate in their subjective physical activity estimation. These are crucial findings in the context of a holistic approach to medical aftercare in these patients. Erfassung körperlicher Aktivität via Wearables bei Patienten mit angeborenem Herzfehler (AHF) war Kern dieser Arbeit. Eine systematische Literaturrecherche ergab durchschnittliche Qualität bisheriger Studien zu diesem Thema. In drei eigenen Studien waren Kinder mit AHF sehr aktiv, aktive Patienten hatten eine höhere Wahrscheinlichkeit, glücklicher zu sein, und erwachsene Patienten müssen sich mehr bewegen müssen. Subjektive Aktivitätserfassung ist nicht ausreichend genau. Das sind wichtige Erkenntnisse in einem Ansatz ganzheitlicher Nachsorge dieser Patienten.

[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.

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.

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.