{"title":"探索影响乳糜泻患者生活质量变化的因素:一项在线调查。","authors":"Martha Elwenspoek, Jonathan Banks, Prajakta Pratap Desale, Jessica Watson, Penny Whiting","doi":"10.1136/bmjgast-2024-001395","DOIUrl":null,"url":null,"abstract":"<p><strong>Objective: </strong>Patients with coeliac disease (CD) need to follow a strict gluten-free diet to manage symptoms and prevent complications. Restrictions imposed by the diet can be challenging and affect quality of life (QoL). We explored sources of variation in QoL among patients with CD.</p><p><strong>Design: </strong>We conducted an online survey of coeliac patients in the UK, including a CD-specific QoL tool (CD-QOL V.1.0), questions on diet adherence and an optional comment box at the end. The survey was disseminated via social media and went live between January and March 2021. We performed multiple linear regression and free text analysis.</p><p><strong>Results: </strong>We found a median CD-QOL score of 61 (IQR 44-76, range 4-100, n=215) suggesting good QoL (Good >59); however, the individual QoL scores varied significantly. Regression analyses showed that people who found diet adherence difficult and people adhering very strictly had a lower QoL. Free text comments suggested that people who adhered very strictly may do so because they have symptoms with minimal gluten exposure. People who found diet adherence difficult may be people who only recently started the diet and were still adjusting to its impact. Comments also highlighted that individuals with CD often perceive a lack of adequate follow-up care and support after diagnosis.</p><p><strong>Conclusion: </strong>Better support and follow-up care is needed for people with CD to help them adjust to a gluten-free diet and minimise the impact on their QoL. Better education and increased awareness are needed among food businesses regarding cross-contamination to reduce anxiety and accidental gluten exposure.</p>","PeriodicalId":9235,"journal":{"name":"BMJ Open Gastroenterology","volume":null,"pages":null},"PeriodicalIF":3.3000,"publicationDate":"2024-06-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11149133/pdf/","citationCount":"0","resultStr":"{\"title\":\"Exploring factors influencing quality of life variability among individuals with coeliac disease: an online survey.\",\"authors\":\"Martha Elwenspoek, Jonathan Banks, Prajakta Pratap Desale, Jessica Watson, Penny Whiting\",\"doi\":\"10.1136/bmjgast-2024-001395\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Objective: </strong>Patients with coeliac disease (CD) need to follow a strict gluten-free diet to manage symptoms and prevent complications. Restrictions imposed by the diet can be challenging and affect quality of life (QoL). We explored sources of variation in QoL among patients with CD.</p><p><strong>Design: </strong>We conducted an online survey of coeliac patients in the UK, including a CD-specific QoL tool (CD-QOL V.1.0), questions on diet adherence and an optional comment box at the end. The survey was disseminated via social media and went live between January and March 2021. We performed multiple linear regression and free text analysis.</p><p><strong>Results: </strong>We found a median CD-QOL score of 61 (IQR 44-76, range 4-100, n=215) suggesting good QoL (Good >59); however, the individual QoL scores varied significantly. Regression analyses showed that people who found diet adherence difficult and people adhering very strictly had a lower QoL. Free text comments suggested that people who adhered very strictly may do so because they have symptoms with minimal gluten exposure. People who found diet adherence difficult may be people who only recently started the diet and were still adjusting to its impact. Comments also highlighted that individuals with CD often perceive a lack of adequate follow-up care and support after diagnosis.</p><p><strong>Conclusion: </strong>Better support and follow-up care is needed for people with CD to help them adjust to a gluten-free diet and minimise the impact on their QoL. Better education and increased awareness are needed among food businesses regarding cross-contamination to reduce anxiety and accidental gluten exposure.</p>\",\"PeriodicalId\":9235,\"journal\":{\"name\":\"BMJ Open Gastroenterology\",\"volume\":null,\"pages\":null},\"PeriodicalIF\":3.3000,\"publicationDate\":\"2024-06-02\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11149133/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"BMJ Open Gastroenterology\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.1136/bmjgast-2024-001395\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"GASTROENTEROLOGY & HEPATOLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"BMJ Open Gastroenterology","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1136/bmjgast-2024-001395","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"GASTROENTEROLOGY & HEPATOLOGY","Score":null,"Total":0}
引用次数: 0
摘要
目的:腹腔疾病(CD)患者需要严格遵守无麸质饮食,以控制症状并预防并发症。饮食限制可能具有挑战性并影响生活质量(QoL)。我们探讨了 CD 患者 QoL 变异的来源:设计:我们对英国的乳糜泻患者进行了一次在线调查,调查内容包括乳糜泻专用的 QoL 工具(CD-QOL V.1.0)、有关饮食依从性的问题以及末尾的可选评论框。调查通过社交媒体发布,于 2021 年 1 月至 3 月间上线。我们进行了多元线性回归和自由文本分析:我们发现,CD-QOL 的中位数为 61 分(IQR 44-76,范围 4-100,n=215),表明 QoL 良好(良好 >59);但是,个人 QoL 分数差异很大。回归分析表明,认为难以坚持饮食的人和严格坚持饮食的人 QoL 较低。自由文本评论表明,严格遵守饮食习惯的人可能是因为他们在极少接触麸质的情况下也会出现症状。认为难以坚持节食的人可能是最近才开始节食并仍在适应其影响的人。评论还强调,CD 患者在确诊后往往认为缺乏足够的后续护理和支持:结论:需要为 CD 患者提供更好的支持和后续护理,以帮助他们适应无麸质饮食,并尽量减少对其 QoL 的影响。食品企业需要加强有关交叉污染的教育并提高意识,以减少焦虑和意外接触麸质的机会。
Exploring factors influencing quality of life variability among individuals with coeliac disease: an online survey.
Objective: Patients with coeliac disease (CD) need to follow a strict gluten-free diet to manage symptoms and prevent complications. Restrictions imposed by the diet can be challenging and affect quality of life (QoL). We explored sources of variation in QoL among patients with CD.
Design: We conducted an online survey of coeliac patients in the UK, including a CD-specific QoL tool (CD-QOL V.1.0), questions on diet adherence and an optional comment box at the end. The survey was disseminated via social media and went live between January and March 2021. We performed multiple linear regression and free text analysis.
Results: We found a median CD-QOL score of 61 (IQR 44-76, range 4-100, n=215) suggesting good QoL (Good >59); however, the individual QoL scores varied significantly. Regression analyses showed that people who found diet adherence difficult and people adhering very strictly had a lower QoL. Free text comments suggested that people who adhered very strictly may do so because they have symptoms with minimal gluten exposure. People who found diet adherence difficult may be people who only recently started the diet and were still adjusting to its impact. Comments also highlighted that individuals with CD often perceive a lack of adequate follow-up care and support after diagnosis.
Conclusion: Better support and follow-up care is needed for people with CD to help them adjust to a gluten-free diet and minimise the impact on their QoL. Better education and increased awareness are needed among food businesses regarding cross-contamination to reduce anxiety and accidental gluten exposure.
期刊介绍:
BMJ Open Gastroenterology is an online-only, peer-reviewed, open access gastroenterology journal, dedicated to publishing high-quality medical research from all disciplines and therapeutic areas of gastroenterology. It is the open access companion journal of Gut and is co-owned by the British Society of Gastroenterology. The journal publishes all research study types, from study protocols to phase I trials to meta-analyses, including small or specialist studies. Publishing procedures are built around continuous publication, publishing research online as soon as the article is ready.