OBJECTIVE: We aimed to compare disease burden and psychosocial outcomes between patients with GD in childhood/young adulthood and an unexposed population cohort. METHODS: This cohort study used prospectively collected data from medical records and multiple Swedish registers. Patients diagnosed with GD aged <21 years (n=87, of whom 55 were <18 years) in 2003-2005 were included. Each patient was matched with 10 individuals without GD. RESULTS: Over the 17-year follow-up (median: 15.5 years), patients with GD had significantly higher recorded rates of 'endocrine, nutritional, and metabolic diseases' (hazard ratio [HR]: 11.7; 6.9-19.7; p<0.001) and 'diseases of the digestive system' (HR: 7.2; 2.2-23.9; p=0.001) compared to the matched population cohort. During the first 10 years after diagnosis, patients with GD had an increased risk of having ≥2 primary diagnoses besides GD (risk ratio [RR]: 4.3; 2.4-8.0; p<0.001), ≥3 days of hospitalization (RR: 5.5; 2.7-10.9; p<0.001), >60 consecutive days of sick leave (RR: 2.1; 1.1-4.1; p=0.027), and receiving disability pension (RR: 4.3; 2.2-8.3; p<0.001). Furthermore, patients with GD were less likely to have completed more than compulsory education by the age of 30 years (RR: 0.4; 0.17-0.91; p=0.029). CONCLUSIONS: Childhood/early adulthood GD leads to increased healthcare needs and socioeconomic challenges, marked by more hospitalizations, sick leaves, disability pensions, and lower educational levels. These results highlight the often chronic nature of GD, emphasizing the need for more research to reduce long-term effects.
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