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Understanding celiac disease monitoring patterns and outcomes after diagnosis: A multinational, retrospective chart review study

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...

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Autores principales: Lundin, Knut EA, Kelly, Ciaran P, Sanders, David S, Chen, Kristina, Kayaniyil, Sheena, Wang, Sisi, Wani, Rajvi J, Barrett, Caitlin, Yoosuf, Shakira, Pettersen, Ellen S, Sambrook, Robert, Leffler, Daniel A
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Baishideng Publishing Group Inc 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8160626/
https://www.ncbi.nlm.nih.gov/pubmed/34092978
http://dx.doi.org/10.3748/wjg.v27.i20.2603
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author Lundin, Knut EA
Kelly, Ciaran P
Sanders, David S
Chen, Kristina
Kayaniyil, Sheena
Wang, Sisi
Wani, Rajvi J
Barrett, Caitlin
Yoosuf, Shakira
Pettersen, Ellen S
Sambrook, Robert
Leffler, Daniel A
author_facet Lundin, Knut EA
Kelly, Ciaran P
Sanders, David S
Chen, Kristina
Kayaniyil, Sheena
Wang, Sisi
Wani, Rajvi J
Barrett, Caitlin
Yoosuf, Shakira
Pettersen, Ellen S
Sambrook, Robert
Leffler, Daniel A
author_sort Lundin, Knut EA
collection PubMed
description 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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spelling pubmed-81606262021-06-03 Understanding celiac disease monitoring patterns and outcomes after diagnosis: A multinational, retrospective chart review study Lundin, Knut EA Kelly, Ciaran P Sanders, David S Chen, Kristina Kayaniyil, Sheena Wang, Sisi Wani, Rajvi J Barrett, Caitlin Yoosuf, Shakira Pettersen, Ellen S Sambrook, Robert Leffler, Daniel A World J Gastroenterol Retrospective Cohort Study 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. Baishideng Publishing Group Inc 2021-05-28 2021-05-28 /pmc/articles/PMC8160626/ /pubmed/34092978 http://dx.doi.org/10.3748/wjg.v27.i20.2603 Text en ©The Author(s) 2021. Published by Baishideng Publishing Group Inc. All rights reserved. https://creativecommons.org/licenses/by-nc/4.0/This article is an open-access article which was selected by an in-house editor and fully peer-reviewed by external reviewers. It is distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial.
spellingShingle Retrospective Cohort Study
Lundin, Knut EA
Kelly, Ciaran P
Sanders, David S
Chen, Kristina
Kayaniyil, Sheena
Wang, Sisi
Wani, Rajvi J
Barrett, Caitlin
Yoosuf, Shakira
Pettersen, Ellen S
Sambrook, Robert
Leffler, Daniel A
Understanding celiac disease monitoring patterns and outcomes after diagnosis: A multinational, retrospective chart review study
title Understanding celiac disease monitoring patterns and outcomes after diagnosis: A multinational, retrospective chart review study
title_full Understanding celiac disease monitoring patterns and outcomes after diagnosis: A multinational, retrospective chart review study
title_fullStr Understanding celiac disease monitoring patterns and outcomes after diagnosis: A multinational, retrospective chart review study
title_full_unstemmed Understanding celiac disease monitoring patterns and outcomes after diagnosis: A multinational, retrospective chart review study
title_short Understanding celiac disease monitoring patterns and outcomes after diagnosis: A multinational, retrospective chart review study
title_sort understanding celiac disease monitoring patterns and outcomes after diagnosis: a multinational, retrospective chart review study
topic Retrospective Cohort Study
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8160626/
https://www.ncbi.nlm.nih.gov/pubmed/34092978
http://dx.doi.org/10.3748/wjg.v27.i20.2603
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