An Improved Understanding of Outcomes Among Children Born with Gastroschisis Development of the Swedish Version of the PedsQL Gastrointestinal Symptom Module, assessment of Health-Related Quality of Life and mental health in gastroschisis

Abstract

Aim: There were two primary objectives of this thesis: first, to translate and validate the PedsQL Gastrointestinal Symptoms Scales and Symptoms Module from US English into Swedish (Papers I and II); and second, to examine the health-related quality of life and mental health of children born with gastroschisis, as well as their associations with clinical factors (Papers III and IV). Method: The PedsQL Gastrointestinal Symptoms Scales and Symptoms Module was translated and psychometrically evaluated in a field test according to international recommendations. The Swedish versions of the PedsQL Gastrointestinal Symptoms Module and the Strength and Difficulties Questionnaire (SDQ) were applied to children born with gastroschisis aged 2–18 and 3–17 years. The clinical factors for those children were collected and analysed to evaluate whether there was any association with QoL and mental health. Results: The Swedish version of the PedsQL Gastrointestinal Symptoms Scales and Symptoms Module displayed good psychometric properties. Children born with gastroschisis exhibited a quality of life comparable to that of children born with oesophageal atresia or Hirschsprung’s disease. The SDQ results indicated that children with gastroschisis experienced mental health challenges. There was a correlation between clinical factors such as “time in ventilator” and “days in silo” and poorer outcome in terms of quality of life and mental health problems. Implications: The PedsQL Gastrointestinal Symptoms Scale and Symptoms Module is suitable for research on children with gastrointestinal disorders. Future research on quality of life and mental health in children born with gastroschisis and the association with clinical factors would benefit from larger sample sizes, ideally through a nationwide study.