Sociaal-maatschappelijke gevolgen en kwaliteit van leven in Nederland bij kinderen en jongvolwassenen opgegroeid met een chronische aandoening

In this paper studies conducted in the Netherlands on quality of life and social status of children and young adults who have grown up with a chronic disease are summarized. Only for 21 diseases studies could be found. Growing up with a chronic disease has negative consequences in terms of social functioning, schooling and intellectual functioning. Problems in quality of life domains are reported for children with congenital heart disease, inflammatory bowel disease, spina bifida and for children with end-stage renal disease. Little is known about predictive factors such as medical determinants, personality or family factors which are related to the later functioning. Research with a psychological-theoretical background in this area should be promoted, also to contribute to the development of necessary interventions for these children and young adults.