Supplementary Material for: Quality of Care and Burden in Patients with Celiac Disease: Results from the German Celiac Registry (GeCeR)

Introduction European and national Celiac Disease (CeD) guidelines offer an easy pathway to diagnose CeD. The German CeD Registry aimed to assess symptoms and clinical findings before diagnosis, diagnostic delay, care during the diagnostic process, and factors associated with persistence of symptoms. Methods Individuals with CeD provided demographic, clinical and healthcare-related information. Participants were divided into four subgroups according to age at diagnosis (>18 or <18 years) and year of diagnosis (before and since 2012). Factors associated with symptoms after at least 1-year on a gluten free diet (GFD) were assessed using multivariate logistic regression. Results From 11/2019 to 10/2021, 2333 participants were enrolled. After exclusion of 169 (7.2%), 2164 remained for analysis, thereof 796 (36.8%) were diagnosed <18 years, and 1283 (59.3%) since 2012. Most common symptoms before diagnosis included abdominal pain (83%), bloating (82%), fatigue (78%), and diarrhoea (71%). Diagnostic delay after 2012 was longer in adults than children (median 4.4 years [IQR 1.2-13.0] versus 1.1 [IQR 0.5 - 2.2], respectively) (p<0.001). Guideline-conform diagnoses increased over time. After diagnosis, only 60% received professional dietary counselling. Factors associated with symptoms despite GFD included female gender (OR 1.79 [95%CI 1.34; 2.40], p<0.001), same symptom before diagnosis (OR 3.45 [2.45; 4.96], p<0.001), insufficient information provided at diagnosis (OR 1.25 [1.00; 1.57], p=0.046), and age at diagnosis (per decade) (OR 1.11 [1.04;1.18], p<0.001), but not time since diagnosis. Conclusions Our findings revealed deficits in awareness, the diagnostic process, and post-diagnostic care that are linked to decreased clinical improvement over time.

引言 欧洲及国家级乳糜泻（Celiac Disease, CeD）指南为乳糜泻的临床诊断提供了便捷路径。德国乳糜泻登记库旨在评估诊断前的症状与临床体征、诊断延迟情况、诊断过程中的诊疗服务，以及与症状持续相关的影响因素。方法 乳糜泻患者需提供人口统计学、临床及医疗保健相关信息。研究对象根据诊断年龄（>18岁或<18岁）与诊断年份（2012年之前及2012年及以后）被分为四个亚组。针对无麸质饮食（gluten free diet, GFD）干预至少1年后仍存在症状的相关影响因素，采用多因素logistic回归分析进行评估。结果 2019年11月至2021年10月期间，共纳入2333名研究对象。排除169例（7.2%）后，剩余2164例纳入分析，其中796例（36.8%）诊断年龄<18岁，1283例（59.3%）于2012年及以后确诊。诊断前最常见的症状包括腹痛（83%）、腹胀（82%）、疲乏（78%）与腹泻（71%）。2012年之后，成人的诊断延迟时间长于儿童（中位时长4.4年[四分位间距1.2~13.0] vs 1.1年[四分位间距0.5~2.2]，p<0.001）。符合指南规范的诊断比例随时间推移有所上升。确诊后仅60%的患者接受了专业饮食指导。与无麸质饮食干预后仍存在症状相关的因素包括女性性别（优势比[OR] 1.79，95%置信区间[CI] 1.34~2.40，p<0.001）、诊断前存在相同症状（OR 3.45，95%CI 2.45~4.96，p<0.001）、确诊时获得的信息不充分（OR 1.25，95%CI 1.00~1.57，p=0.046）以及诊断年龄（每增加10岁，OR 1.11，95%CI 1.04~1.18，p<0.001），但与确诊后的时长无关。结论 本研究结果显示，乳糜泻的认知水平、诊断流程及诊后护理均存在不足，这些不足与临床改善效果随时间推移出现下降相关。