scholarly journals Long-term Follow-Up of Individuals with Celiac Disease: An Evaluation of Current Practice Guidelines

2007 ◽  
Vol 21 (9) ◽  
pp. 557-564 ◽  
Author(s):  
Jocelyn A Silvester ◽  
Mohsin Rashid

INTRODUCTION: Celiac disease can be treated by following a strict gluten-free diet for life. If properly followed, the diet resolves symptoms and nutritional deficiencies. It is generally recommended that individuals with celiac disease have careful long-term follow-up. However, it is not clear which elements of disease status evaluation, laboratory investigations and self-management support should be included in follow-up.OBJECTIVES: To examine the current practice guidelines and recommendations regarding follow-up of individuals with celiac disease.METHODS: Guidelines issued by gastroenterological societies and associations, and recommendations by experts were retrieved using MEDLINE and other Internet search engines.RESULTS: Practice guidelines were available from the American Gastroenterological Association; the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition; the National Institutes of Health Consensus Development Conference 2004; the World Gastroenterology Organization; the British Society for Gastroenterology and the United Kingdom-based Primary Care Society for Gastroenterology. Most guidelines recommended a scheduled annual review and regular measurements of body mass index. The British Society for Gastroenterology recommended dietary review only at times of stress, while others recommended dietary review with a nutritionist. All associations recommended serial tissue transglutaminase antibody testing. The American Gastroenterological Association and the Primary Care Society for Gastroenterology recommended annual hemoglobin, ferritin and folate checks. One guideline recommended annual hemoglobin, electrolyte, calcium, albumin, ferritin, folate, fat-soluble vitamin, liver function test, parathyroid hormone and bone density measurements (approximately $400 per patient).CONCLUSIONS: The current practice guidelines regarding the follow-up of patients with celiac disease varied greatly in their recommendations and many were not evidence-based. Prospective studies are required to develop rational, cost-effective and risk-stratified guidelines for long-term follow-up of these patients.

2014 ◽  
Vol 16 (11) ◽  
pp. 1241-1248 ◽  
Author(s):  
Marie Louise A. Luttik ◽  
Tiny Jaarsma ◽  
Peter Paul van Geel ◽  
Maaike Brons ◽  
Hans L. Hillege ◽  
...  

2002 ◽  
Vol 95 (4) ◽  
pp. 194-197 ◽  
Author(s):  
Siwan Thomas-Gibson ◽  
Catherine Thapar ◽  
Syed G Shah ◽  
Brian P Saunders

Provisional reports from the Intercollegiate British Society of Gastroenterology National Colonoscopy audit show completion rates of 57–77%for the procedure and poor levels of training and supervision. We prospectively audited all aspects of colonoscopy performed at a combined district general hospital and specialist endoscopy unit. Details of referral, examination, endoscopist, complications and follow-up were recorded and patients were sent questionnaires for long-term follow-up. 505 patients (246 male) underwent colonoscopy by 27 different endoscopists. Their median age was 57 years (range 13–92) and 93%were outpatients. 64% patients were symptomatic and 36%were having surveillance or follow-up colonoscopy. The overall caecal intubation rate was 93%, with little difference between surgeons, physicians and experienced trainees (89%, 92%, 94%) and specialist endoscopists (98%). In only one case was an inexperienced trainee (<100 procedures) unsupervised. Pain scores estimated by the endoscopist were well matched with those given by the patient—medians 29 and 26 (maximum 100) respectively. Median satisfaction score was 96 (maximum 100). Polyp pick-up rate was 26.9%and there were 11 new cancers. 16 (3%) minor immediate complications were recorded—5 oversedation, 6 vasovagal attacks, 3 polypectomy haemorrhages and 2 mucosal injuries (neither requiring treatment). 3 patients died within 6 months of follow-up but no death was colonoscopy related. Completion rates in this setting were adequate for all endoscopists studied. Patient satisfaction with the procedure was high and very few immediate or long-term complications were encountered.


2010 ◽  
Vol 24 (8) ◽  
pp. 499-509 ◽  
Author(s):  
Jocelyn Anne Silvester ◽  
Mohsin Rashid

BACKGROUND: Long-term follow-up of patients with celiac disease is important for monitoring their clinical status, dietary compliance and complications.AIM: To examine the current practices of Canadian gastroenterologists providing long-term care to patients with celiac disease.METHODS: All gastroenterologists in Canada (n=585) were surveyed regarding their practice demographics, familiarity with celiac disease practice guidelines, and follow-up clinical examination and investigations.RESULTS: Of the 585 surveys mailed to gastroenterologists, 567 were expected to be returned. A total of 242 completed surveys (43%) were received. Of these, 237 (184 adult, 51 pediatric and two mixed) had an active practice that included patients with celiac disease. Long-term follow-up care was provided routinely by 76% of respondents. Follow-up consisted of annual clinic visits (67%), dietary review (77%), reinforcement of the need for adherence to a gluten-free diet (90%) and recommending membership in an advocacy group (65%). Physical examination was performed by 78%; most ordered laboratory tests including serology (65%).Adult gastroenterologists performed routine follow-up intestinal biopsy more often than their pediatric counterparts (46% versus 10%), but performed serology less frequently (48% versus 86%). Pediatric patients were more likely to be followed by a multidisciplinary team. All pediatric gastroenterologists were familiar with at least one celiac disease practice guideline, whereas 15% of adult gastroenterologists were not familiar with any practice guideline. The majority of gastroenterologists who did not routinely provide follow-up expected care to be provided by the patient’s primary physician (86%).CONCLUSIONS: Most gastroenterologists in Canada who responded to the survey provided long-term follow-up care to patients with celiac disease. The diverse practices reported underscore the need to develop consensus-based guidelines for long-term care of these patients.


Author(s):  
Marja-Leena L??hdeaho ◽  
Katri Kaukinen ◽  
Pekka Collin ◽  
Tarja Ruuska ◽  
Jukka Partanen ◽  
...  

2018 ◽  
Vol 21 (3) ◽  
pp. 250-256 ◽  
Author(s):  
Adinda K.E. Mailuhu ◽  
Edwin H.G. Oei ◽  
Nienke van Putte-Katier ◽  
John M. van Ochten ◽  
Patrick J.E. Bindels ◽  
...  

2015 ◽  
Vol 83 (4) ◽  
pp. 264-271 ◽  
Author(s):  
A. Cárceles-Álvarez ◽  
J.A. Ortega-García ◽  
J.L. Fuster-Soler ◽  
G.A. Rivera-Pagán ◽  
M. Bermúdez-Cortés ◽  
...  

2021 ◽  
Author(s):  
Benjamin Kearns ◽  
Matt D. Stevenson ◽  
Kostas Triantafyllopoulos ◽  
Andrea Manca

Abstract BackgroundEstimates of future survival can be a key evidence source when deciding if a medical treatment should be funded. Current practice is to use standard parametric models for generating extrapolations. Several emerging, more flexible, survival models are available which can provide improved within-sample fit. This study aimed to assess if these emerging practice models also provided improved extrapolations.MethodsBoth a simulation study and a case-study were used to assess the goodness of fit of five classes of survival model. These were: current practice models, Royston Parmar models (RPMs), Fractional polynomials (FPs), Generalised additive models (GAMs), and Dynamic survival models (DSMs). The simulation study used a mixture-Weibull model as the data-generating mechanism with varying lengths of follow-up and sample sizes. The case-study was long-term follow-up of a prostate cancer trial. For both studies, models were fit to an early data-cut of the data, and extrapolations compared to the known long-term follow-up.ResultsThe emerging practice models provided better within-sample fit than current practice models. For data-rich simulation scenarios (large sample sizes or long follow-up), the GAMs and DSMs provided improved extrapolations compared with current practice. Extrapolations from FPs were always very poor whilst those from RPMs were similar to current practice. With short follow-up all the models struggled to provide useful extrapolations. In the case-study all the models provided very similar estimates, but extrapolations were all poor as no model was able to capture a turning-point during the extrapolated period. ConclusionsGood within-sample fit does not guarantee good extrapolation performance. Both GAMs and DSMs may be considered as candidate extrapolation models in addition to current practice. Further research into when these flexible models are most useful, and the role of external evidence to improve extrapolations is required.


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