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Understanding celiac disease monitoring patterns and outcomes after diagnosis: A multinational, retrospective chart
Knut Ea Lundin1, Ciaran P Kelly2, David S Sanders3
1K.G. Jebsen Coeliac Disease Research Centre, University of Oslo, Oslo 0450, Norway.
Insights
Real-world celiac disease management shows inconsistent follow-up. Many patients experience persistent symptoms and abnormal histology despite diagnosis, highlighting variability in care.
Area of Science:
- Gastroenterology
- Clinical Medicine
- Celiac Disease Research
Background:
- Long-term outcomes and monitoring patterns for celiac disease patients in real-world settings are not well understood.
- Understanding these patterns is crucial for improving patient management and outcomes.
Purpose of the Study:
- To investigate follow-up and management strategies for celiac disease patients.
- To characterize the persistence of symptoms and villous atrophy post-diagnosis.
Main Methods:
- A retrospective chart review was conducted across three international gastroenterology centers.
- Data from 300 biopsy-confirmed celiac disease patients diagnosed between 2008-2012 were analyzed.
- Demographics, clinical data, diagnostic tests, symptoms, and comorbidities were collected up to December 2017.
Main Results:
- Most patients (68.4%) reported ongoing gastrointestinal symptoms; 11.0% had persistent symptoms with enteropathy.
- Half of patients underwent follow-up duodenal biopsies, with 36.6% showing continued villous atrophy.
- Monitoring practices, including biopsy frequency and follow-up duration, varied significantly between participating centers.
Conclusions:
- Real-world follow-up for celiac disease patients is highly variable.
- A significant proportion of patients continue to exhibit abnormal histology and symptoms post-diagnosis, indicating a need for standardized management protocols.
Background:
Long-term outcomes and monitoring patterns in real-world practice are largely unknown among patients with celiac disease.
Aim:
To understand patterns of follow-up and management of patients with celiac disease, and to characterize symptoms and villous atrophy after diagnosis.
Methods:
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).
Results:
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.
Conclusion:
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.
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