Department of Pediatrics, Gastroenterology, Hepatology and Nutrition Unit, University Medical Centre Maribor, Maribor, Slovenia.
IRCCS Burlo Garofolo Trieste, Institute for Maternal and Child Health, Trieste, Italy.
J Pediatr Gastroenterol Nutr. 2021 Apr 1;72(4):552-557. doi: 10.1097/MPG.0000000000003019.
Celiac disease (CD) remains undiagnosed for a long time in many adult and pediatric patients. We assessed the knowledge about CD among healthcare professionals (HCPs) and CD patients in Central Europe (CE).
HCPs and CD patients from 5 CE countries were asked to complete the web-based questionnaire about CD. The questions were divided into subsections on epidemiology, clinical presentation, diagnostics, treatment, and follow-up. Achieved scores of different specialists managing patients with CD were compared and regional differences in patients' knowledge were analyzed.
Questionnaire was completed by 1381 HCPs and 2262 CD patients or their caregivers from Croatia, Hungary, Germany, Italy, and Slovenia. Mean score achieved by HCPs was 50.9%, and by CD patients 56.4%. Pediatric gastroenterologists scored the highest (69.4%; P < 0.001). There were significant differences in knowledge of patients from different CE regions with German participants scoring the highest (58.3%). Members of CD societies scored higher compared with nonmembers (mean score 58% vs 53.2%; P < 0.001) and patients diagnosed less than 5 years ago scored higher compared with those diagnosed more than 10 years ago (mean score 57.3% vs 54.6%; P < 0.001).
The knowledge about CD among HCPs and CD patients is not satisfactory. Further awareness-raising and learning activities are needed to improve HCPs' knowledge and to minimize the number of unrecognized patients and unnecessary diagnostic delays. Patients should be better informed about their disease to reach higher compliance with the gluten-free diet.
在许多成年和儿科患者中,乳糜泻(CD)仍长期未被诊断。我们评估了中欧(CE)地区医疗保健专业人员(HCP)和 CD 患者对 CD 的认识。
要求来自 5 个 CE 国家的 HCP 和 CD 患者填写有关 CD 的网络问卷。问题分为流行病学、临床表现、诊断、治疗和随访等部分。比较了不同专科医生管理 CD 患者的得分,并分析了患者知识的地区差异。
问卷由来自克罗地亚、匈牙利、德国、意大利和斯洛文尼亚的 1381 名 HCP 和 2262 名 CD 患者或其照顾者填写。HCP 的平均得分为 50.9%,CD 患者为 56.4%。儿科胃肠病学家得分最高(69.4%;P<0.001)。来自不同 CE 地区的患者在知识方面存在显著差异,德国参与者得分最高(58.3%)。CD 协会的成员得分高于非成员(平均得分 58%比 53.2%;P<0.001),且诊断时间少于 5 年的患者得分高于诊断时间超过 10 年的患者(平均得分 57.3%比 54.6%;P<0.001)。
HCP 和 CD 患者对 CD 的认识并不理想。需要进一步提高认识和学习活动,以提高 HCP 的知识水平,减少未被识别的患者数量和不必要的诊断延误。应更好地向患者宣传他们的疾病,以提高对无麸质饮食的依从性。