Quality of life of heart children and their parents
What is health-related quality of life?
Immense advances in cardiosurgery and cardiology mean that in Western countries today, most children with congenital heart defects can be treated successfully, and only a small proportion of children face lifelong physical limitations. From an ethical point of view, highly specialized medicine needs to consider the impact of treatment on the lives of patients and their families. Purely medical indicators such as survival are no longer the only criteria for the benefit of treatments, as they no longer give a complete picture of the effects of treatment on patients' everyday lives. To assess the quality of cardiosurgical and cardiological measures, criteria need to include not only physical but also psychological and social factors; this means taking the patient’s subjective view into account.
A central concept in this context is health-related quality of life.
As early as 1946, the World Health Organization defined health as a state of complete physical, mental, and social well-being rather than merely the absence of disease or infirmity. Today, health-related quality of life is understood to include the subjective assessment of the patient or third parties of various aspects of well-being and functioning. The following three functional areas represent the core of health-related quality of life:
Physical functions: This dimension includes physical symptoms and complaints (e.g. pain), motor function (e.g. walking ability), and independent performance of everyday tasks (e.g. personal hygiene).
Psychological and cognitive functions: These are the emotional state (e.g. joy, depression) and cognitive functioning (e.g. ability to concentrate, school performance).
Social functions: These include the quality of relationships with family members and peers and general embedding in the social context (e.g. school).
Quality of life can be measured with questionnaires, which are filled out either by the child (in interview form from the age of 7) or by their parents (external assessment).
How good is the quality of life of children with congenital heart defects?
In general, studies show that the majority of children with congenital heart defects have a good to very good quality of life. However, the more complex the heart defect and its symptoms or the more complex its treatment is, the more likely limitations are to the quality of life. These can affect physical, psychological, cognitive, and social dimensions. Interestingly, psychological and social factors also have a considerable influence on how children and adolescents feel. The quality of family relationships is particularly important. Children who come from loving and well-functioning families can have a good quality of life in psychological and social areas, even with clear physical limitations.
How good is the quality of life of the parents of children with congenital heart defects?
Parents are also burdened in many ways by
their child's heart defect and its treatment. Accordingly, they may also have
limitations in their quality of life, especially in the acute phase of
treatment. Fortunately, the quality of life of almost all parents normalizes
after completion of the surgical treatment, although mothers’ quality of life
often remains impaired somewhat longer. Parents who have had traumatic experiences
during the diagnosis and treatment of their child with heart disease (e.g.
acute fear that their child will die) are particularly at risk of long-term
How can the quality of life be improved?It is important that the quality of life of children and parents with heart disease is regularly discussed with the specialists treating the condition so that it can be improved from early on. Measures include a wide range of psychological, social, and remedial educational measures for the child, and support and relief measures for the parents.
Landolt, M. A., Valsangiacomo Buechel, E. R., & Latal, B. (2008). Health-related quality of life in children and adolescents after open-heart surgery. J Pediatr, 152(3), 349-355. doi:10.1016/j.jpeds.2007.07.010
Landolt, M. A., Buechel, E. V., & Latal, B. (2011). Predictors of parental quality of life after child open heart surgery: a 6-month prospective study. J Pediatr, 158(1), 37-43. doi:10.1016/j.jpeds.2010.06.037
Latal, B., Helfricht, S., Fischer, J. E., Bauersfeld, U., & Landolt, M. A. (2009). Psychological adjustment and quality of life in children and adolescents following open-heart surgery for congenital heart disease: a systematic review. BMC Pediatr, 9, 6. doi:10.1186/1471-2431-9-6
Werner, H., Latal, B., Valsangiacomo Buechel, E., Beck, I., & Landolt, M. A. (2014). Health-Related Quality of Life after Open-Heart Surgery. J Pediatr, 164(2), 254–258. doi:10.1016/j.jpeds.2013.10.022
Prof. Dr. Markus Landolt / 9.2.2018