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Martha MC Elwenspoek 1,2,*, Howard Thom 2, Athena L Sheppard 1,2,3, Edna Keeney 2, Rachel O’Donnell 1,2, Joni Jackson 1,2, Cristina Roadevin 2, Sarah Dawson 2, Deborah Lane 4, Jo Stubbs 4, Hazel Everitt 5, Jessica C Watson 2, Alastair D Hay 2, Peter Gillett 6, Gerry Robins 7, Hayley E Jones 2, Sue Mallett 8, Penny F Whiting 2

1 National Institute for Health and Care Research Applied Research Collaboration West, University Hospitals Bristol NHS Foundation Trust, Bristol, UK
2 Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, UK
3 Department of Health Sciences, University of Leicester, Leicester, UK
4 Patient representative, , UK
5 Primary Care Research Centre, Population Sciences and Medical Education, University of Southampton, Southampton, UK
6 Paediatric Gastroenterology, Hepatology and Nutrition Department, Royal Hospital for Sick Children, Edinburgh, UK
7 Department of Gastroenterology, York Teaching Hospital NHS Foundation Trust, York, UK
8 Centre for Medical Imaging, University College London, London, UK
* Corresponding author Email: Martha.Elwenspoek@bristol.ac.uk

Declared competing interests of authors: Howard Thom reports grants from the National Institute for Health and Care Research (NIHR) [Health Technology Assessment (HTA) 18/134 and NIHR Bristol Biomedical Research Centre], and the Medical Research Council (MRC) (MR/S036709/1); Howard Thom is also a part owner of Clifton Insight and has received consulting fees, paid to Clifton Insight, from Novartis International AG (Basel, Switzerland), F. Hoffmann-La Roche AG (Basel, Switzerland), Pfizer Inc. (New York, NY, USA), Bristol Myers Squibb™ (BMS) (New York, NY, USA), Eisai Co., Ltd (Tokyo, Japan), Argenx (Ghent, Belgium), H. Lundbeck A/S (Copenhagen, Denmark) and Janssen Pharmaceuticals (Beerse, Belgium). He has also received other fees from Clifton Insight. Athena L Sheppard reports grants from the NIHR HTA programme (18/134), payments made to their institution, an employment contract with F. Hoffmann-La Roche (2020), a training grant from the National Centre for Research Methods and a travel grant from the Royal Statistical Society. Edna Keeney reports personal fees from Novartis International AG, F. Hoffmann-La Roche, Pfizer Inc. and BMS. Alastair D Hay reports grants from NIHR (Senior Investigator Award NIHR200151), and membership of the Efficacy and Mechanism Evaluation (EME) Funding Committee (2019 to present) and the National Institute for Health and Care Excellence managing common infections committee (2019 to present). Gerry Robins reports membership of the Trustee Board for Coeliac UK (High Wycombe, UK). Hayley E Jones reports grants from MRC-NIHR (New Investigator Research Grant MR/T044594/1) and consulting fees from Aquarius Population Health (London, UK).

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Responses to this report

Response by Martha Elwenspoek on 15 August 2024 at 3:35 PM
Author response to comment
Thank you for your comment and for highlighting this important aspect. In our study, we primarily relied on data from primary care records, which, as you mention, do not include information from the NCMP. As a result, we were unable to directly assess the potential impact of underweight status or stunted growth as recorded by the NCMP on the likelihood of coeliac disease. Our findings did suggest that offering coeliac testing to all children (and adults) with weight loss with cost-effective. However, it's worth noting that these were children with weight loss recorded in their medical records, which will be a subset of children that would be identified through the NCMP data. Nevertheless, the New ESPGHAN Guidelines for the Diagnosis of Paediatric Coeliac Disease (2020) do recommend testing all children with weight loss or failure to thrive for coeliac disease. Linking NCMP data with primary care records would provide valuable dataset that could be used to assess this more formally.

 

Response by Dr Catherine Anne Scott on 28 November 2022 at 10:36 AM
Systematic screening of underweight children from child measurement programme
Is there evidence that screening for coeliac in children who are classified as underweight or have stunted growth as measured by the National Child Measurement Programme (NCMP) would be of benefit? The National Child Measurement Programme is already delivered and is a mandatory programme for all children in the first and final year of primary school (aged 4–5 and 10–11 years). Astonishingly, this data is not shared with the child's GP/primary care record and means the healthcare system is unable to identify children with over or underweight and use the information for the benefit of the individual. Given that most cases of coeliac show stunted growth and underweight it would be useful to know if there were evidence that being underweight or having stunted growth at either of these time points, or dropping centiles for height or weight between the two measurements should result in the offer of serological screening. I think it is highly likely all or some of these indicators would substantially increase the pretest probability. This is turn could prevent undiagnosed malnutrition, delayed puberty, osteoporosis, lymphoma or other consequences of undiagnosed coeliac disease at a vital moment.

 

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