Clinical outcome and long-term quality of life in patients treated for gastroschisis – Results from a national study

Background Gastroschisis is the most common type of congenital abdominal wall defects. The survival rate is close to 100% in high-income countries, but knowledge on long-term outcomes is limited. Particularly, long-term quality of life (QoL) is scarcely reported. The aim of this study was to explore long-term clinical outcomes and to investigate patient-reported gastrointestinal and generic QoL in gastroschisis patients. Methods This is a cross-sectional long-term follow-up study of patients treated for gastroschisis 2009-2022 at the two tertiary referral hospitals for pediatric surgery in Norway. Eligible patients were invited to participate in a questionnaire survey. Gastrointestinal and generic QoL were assessed with the PedsQL Gastrointestinal Symptoms Scales and the PedsQL Generic Core Scales. Results were compared to those from healthy controls. Perioperative data, medical history and complications were collected from a study-specific questionnaire and electronic patient records. Ethical approval was obtained. Results Of 172 eligible patients, 82 (48%) responded. Sixteen (20%) underwent at least one unplanned laparotomy, most commonly due to mechanical intestinal obstruction. At follow-up, nearly one third had significant symptoms of gas and bloating, diarrhea, and constipation. Impaired outcomes for school functioning were registered in 11 (13%) patients. Eleven (13%) respondents reported unsatisfactory follow-up, particularly regarding management of gastrointestinal complaints and inadequate information about gastroschisis. Furthermore, 14 (17%) wanted assessment regarding surgical correction of the scar. Conclusion Significant long-term gastrointestinal complaints and impaired school functioning occur frequently in gastroschisis patients, and parents often experience insufficient qualified follow-up. This knowledge is important for parental information and when planning follow-up.