Regional Swedish study found that one in seven coeliac patients experienced loss of follow up during childhood.

Abstract

To examine the clinical follow up of paediatric coeliac disease and the rate of loss of follow up during childhood, for which data are scarce. In a cohort of coeliac children diagnosed in 2013-2018 in Gothenburg, Sweden, we retrospectively explored the follow-up practice of paediatric coeliac disease until June 2021. We used medical records from hospital-based paediatric gastroenterology and general paediatric outpatient clinics, laboratory records, and questionnaires. Loss of follow up was defined no coeliac disease-related follow up or tissue transglutaminase test over the past 2 years of study enrolment. We included 162 children (58% girls) aged 7.8-18.2 years (average 12.7). Most participants (76%) were followed at general paediatric outpatient clinics rather than hospital-based clinics. After 2.3-8.8 (average 5.3) years since diagnosis, 23 patients (14%; 95% confidence interval, 9%-21%) had been lost to follow up. Patients with loss of follow up were more often boys (61% versus 39%, p=0.08), with a somewhat longer average disease duration of 5.8 versus 5.2 years (p=0.11). There were no between-group differences in socio-economic characteristics and patient-reported experience measures of coeliac disease care. One in seven coeliac patients may experience loss of follow up during childhood.