Published online May 28, 2021. doi: 10.3748/wjg.v27.i20.2603
Peer-review started: November 12, 2020
First decision: January 23, 2021
Revised: March 9, 2021
Accepted: April 28, 2021
Article in press: April 28, 2021
Published online: May 28, 2021
Long-term outcomes and monitoring patterns in real-world practice are largely unknown among patients with celiac disease.
To understand patterns of follow-up and management of patients with celiac disease, and to characterize symptoms and villous atrophy after diagnosis.
A retrospective chart review study was performed using medical chart data of patients diagnosed with celiac disease. Three gastroenterology referral centers, with substantial expertise in celiac disease, participated in the United Kingdom, United States, and Norway. Demographic and clinical data were collected from medical charts. Descriptive analyses were conducted on patients with biopsy-confirmed celiac disease, diagnosed between 2008 and 2012, with at least one follow-up visit before December 31, 2017. Patient demographic and clinical characteristics, biopsy/serology tests and results, symptoms, and comorbidities were captured at diagnosis and for each clinic visit occurring within the study period (i.e., before the study end date of December 31, 2017).
A total of 300 patients were included in this study [72% female; mean age at diagnosis: 38.9 years, standard deviation (SD) 17.2]. Patients were followed-up for a mean of 29.9 mo (SD 22.1) and there were, on average, three follow-up visits per patient during the study period. Over two-thirds (68.4%) of patients were recorded as having ongoing gastrointestinal symptoms and 11.0% had ongoing symptoms and enteropathy during follow-up. Approximately 80% of patients were referred to a dietician at least once during the follow-up period. Half (50.0%) of the patients underwent at least one follow-up duodenal biopsy and 36.6% had continued villous atrophy. Patterns of monitoring varied between sites. Biopsies were conducted more frequently in Norway and patients in the United States had a longer follow-up duration.
This real-world study demonstrates variable follow-up of patients with celiac disease despite most patients continuing to have abnormal histology and symptoms after diagnosis.
Core Tip: Inadequately managed celiac disease can lead to health complications. However, there are limited published data on real-world monitoring and outcomes for patients with celiac disease. In this real-world study, country/site-specific differences in the routine monitoring of patients after diagnosis were evident, including differences in the frequency of follow-up biopsy. A large proportion of patients continued to have villous atrophy and symptoms after diagnosis and, therefore, there is a continued need for more routine follow-up assessments, including mucosal assessments of celiac disease activity.