Long-term psychosocial outcomes of children after invasive treatment for congenital heart disease and psychological adjustment of their parents

textabstractThe objective of the study described in this thesis was to examine a range of long-term psychosocial outcomes of children and adolescents who underwent invasive treatment for congenital heart disease at a young age. In addition, the psychological adjustment of their parents was assessed. In chapter 1, the background and the aims of this study were presented. Over the past decades, advances in diagnostic and surgical techniques and medical treatment of ConHD have gradually evolved and have significantly improved long-term survival of patients with ConHD. Despite improved survival, many patients with ConHD have more or less cardiac sequelae after surgical or interventional treatment. Next to survival, long-term morbidity is of great interest. Morbidity may impair the psychosocial functioning and quality of life of patients with ConHD. Hence, both clinicians and researchers have become more interested in the long-term psychosocial outcomes of patients treated for ConHD. In the present study, various indicators of psychosocial functioning of children and adolescents with ConHD were measured. A follow-up examination was performed (from 2003-2004) among consecutive surviving patients of 4 diagnostic groups, who underwent their first invasive treatment for ConHD at least 7 years and 6 months ago (between 1 January 1990 and 1 January 1996) in the Erasmus University Medical Centre Rotterdam, and who were younger than 15 years at the time of the treatment. At follow-up 206 patients were aged 7-28 years. Of this group 35 patients were aged 18-28 years. Results of the 18-28-year-old patients were not included in this thesis. The present patient sample consisted of 171 patients, aged 7-17 years, and their parents