Background: Current research is paying more attention to neurological outcomes and quality of life after life-threatening events. Children with heart disease are particularly vulnerable, especially after resuscitation events. While newer data show that adults with heart failure and a left-ventricular assist device suffer from a higher incidence of depression, mental health in pediatric heart disease patients is poorly understood. This is the first study in Germany to examine the quality of life and psychological burden in cardiac arrest survivors with congenital or acquired heart disease. Methods: This monocentric study retrospectively analyzed survival outcomes of pediatric heart disease patients who underwent in-hospital resuscitation between 2008 and 2022. The PedsQL and Strength and difficulties questionnaires were prospectively administered to survivors to assess quality of life and emotional/behavioral problems, while academic achievements were additionally documented. Results: Of 127 patients experiencing cardiac arrest, 91 (71.7%) survived to discharge. Most had complex congenital heart diseases; mean cardiopulmonary resuscitation duration was 14 min. Five patients received extracorporeal cardiopulmonary resuscitation. Of the 22 patients who were receiving follow-up care at the pediatric cardiology outpatient clinic at the time of the study, 14 completed questionnaires were received. Overall quality of life was comparable to healthy controls, though those with prolonged or multiple resuscitations showed lower physical, emotional, social, and school functioning scores. The Strengths and Difficulties Questionnaire revealed no pathological scores but elevated average values for hyperactivity and emotional problems in parent reports, and emotional and peer difficulties in self-reports, indicating increased psychological burden. Conclusions: While survival rates are comparable to international data, gaps exist in structured follow-up and neuropsychological care, especially for high-risk subgroups like ECMO survivors. Routine neuropsychological screening and multidisciplinary outpatient programs are essential to improve long-term follow-up care.
Heart failure is a common phenomenon in congenital heart disease patients. Cardiopulmonary exercise testing is used for a reliable assessment of heart failure but is still challenging, especially for young children. Implementing mobile cardiopulmonary exercise testing (CPET) can close that diagnostic gap. While average values for healthy children have already been published, this study aims to describe typical ranges of cardiovascular performance parameters of young children with congenital heart disease performing an 8-min running cardiopulmonary exercise test. Children aged 4–8 years with common congenital heart defects after corrective surgery (Tetralogy of Fallot; transposition of the great arteries and univentricular hearts after palliation) were included. The outdoor running protocol consisted of slow walking, slow jogging, fast jogging, and maximum speed running. Each exercise was performed for 2 min, except the last, in which children were instructed to keep up maximal speed as long as possible. A total of 78 children (45 male/33 female, mean age 6,24) with congenital heart disease participated in the study, of which 97% completed the CPET successfully. A detailed description of participating patients, including data on cardiac function and subjective fitness levels, is given to help physicians use this method to classify their patients. This study presents a typical range for cardiovascular performance parameters in a population of 4–8-year-old children with congenital heart disease tested in a newly developed outdoor running protocol for CPET.