Purpose: The aim of this long-term follow-up study was to investigate the current self assessed physical health in a CDH birth cohort at a single center.
Methods: Between 1990 and 2009, 195 children born with CDH were treated at Astrid Lindgren Children's Hospital. The primary survival rate was 85 %, and in 2010, 78 % were still alive. Data from medical records were supplemented by a questionnaire consisting of questions about perceived physical function. Patients were divided into groups according to time for intubation and need for extracorporeal membrane oxygenation.
Results: Children born with CDH reported themselves to be having greater problems with asthma, developmental delay, seizure disorder, poor vision, and scoliosis in comparison with normal Swedish children. They also described a sense of having less strength and becoming breathless more often than healthy friends. Symptoms of gastroesophageal reflux and abdominal pain were also reported.
Conclusions: The majority of the children perceived their physical health as being overall good, but there was an increase of reported symptoms correlating with the severity of the malformation.
Keywords: Congenital diaphragmatic hernia; Extracorporeal membrane oxygenation; Long-term follow-up; Outcome; Survival.