Long-term follow-up in children born with congenital diaphragmatic hernia

Congenital diaphragmatic hernia (CDH) is a developmental defect which occurs in approximately 1 per 3000 births. The incomplete development of the diaphragm early in gestation allows abdominal viscera to herniate into the thoracic cavity. The malformation differs in size and can occur on either one or both sides, but most commonly on the left. Normal lung development is impaired and the lungs become hypoplastic with an impaired lung structure, often causing acute respiratory distress shortly after birth. Children born with CDH, as well as their parents, very often experience a dramatic first period in life. There is also a large difference in the length of hospital stay and the initial care needed; where the size of the diaphragmatic defect seems to be crucial. The survival rate has increased over the last few decades and about 85% of all children born with CDH are discharged from hospital to their homes. Children born with CDH who survive often suffer from morbidities related to pulmonary hypoplasia and associated anomalies, but also from the sequelae resulting from the intensive care they were exposed to. The aim of this thesis was to study the long-term outcome of children and adolescents born with CDH in terms of perceived health, health-related quality of life (HRQoL) and psychosocial function. Further, the aim was to assess parental stress in parents of children born with CDH. All the studies were cross-sectional. In Study I, all children born with CDH between 1990 and 2009 who had been treated at Sankt Görans and Astrid Lindgren Children’s hospitals were asked to participate. Data from medical records were supplemented by a questionnaire consisting of questions regarding perceived physical function. Children born with CDH reported themselves as experiencing greater problems with asthma, developmental delay, seizure disorder, poor vision, and scoliosis compared with normal Swedish children. They also described a sense of having less strength and becoming breat