Department of Internal Medicine, Section of Gastroenterology.
Harvard Celiac Research Program, Boston Children's Hospital, Harvard Medical School, Boston, MA.
J Clin Gastroenterol. 2022;56(10):869-874. doi: 10.1097/MCG.0000000000001584. Epub 2021 Jul 30.
The aim of this study was to survey adults with celiac disease (CD) on the utility of specific aspects of follow-up and on information needs.
Currently, the treatment for CD is strict gluten avoidance. Although this places the onus on the patient for disease management, patient perspectives on CD care have not been formally assessed.
The Manitoba Celiac Disease Cohort prospectively enrolled adults newly diagnosed with CD using serology and histology. At the 24-month study visits, participants rated the utility of aspects of CD care on a 5-point scale anchored by "not at all useful" and "very useful" and the helpfulness of information on CD-related topics on a 6-point scale anchored by "not at all helpful" and "very helpful."
The online survey was completed by 149 of 211 cohort members [median age 40 (interquartile range 30 to 56) y; 68% female]. Adherence to a gluten-free diet was good. Most participants (87%) responded that they should be seen regularly for medical follow-up of CD, preferably every 6 (26%) or 12 months (48%). Blood tests were the most highly rated care component (rated scored ≥4/5 by 78% of respondents), followed by the opportunity to ask about vitamins and supplements (50%), symptom review (47%), and information on CD research (44%). Diet review was not considered helpful.
Two years after diagnosis, most individuals with CD find regular specialist follow-up helpful, particularly for biochemical assessment of disease activity and its complications. Furthermore, information on research and long-term complications of CD is also valued.
本研究旨在调查乳糜泻（CD）患者对随访具体方面的实用性及其信息需求。
目前，CD 的治疗方法是严格避免食用麸质。尽管这将疾病管理的责任放在了患者身上，但患者对 CD 护理的看法尚未得到正式评估。
马尼托巴乳糜泻队列前瞻性地招募了通过血清学和组织学诊断为新的 CD 的成年人。在 24 个月的研究访视中，参与者使用 5 分制评估 CD 护理方面的实用性，从“完全没有用”到“非常有用”，并使用 6 分制评估 CD 相关主题的信息的有用性，从“完全没有用”到“非常有用”。
在线调查完成了 211 名队列成员中的 149 名（中位年龄 40 [四分位距 30 至 56] 岁；68%为女性）。无麸质饮食的依从性良好。大多数参与者（87%）认为他们应该定期接受 CD 的医疗随访，最好每 6（26%）或 12 个月（48%）一次。血液检查是最受好评的护理成分（78%的受访者评分≥4/5），其次是询问维生素和补品的机会（50%）、症状复查（47%）和 CD 研究信息（44%）。饮食复查被认为没有帮助。
诊断后 2 年，大多数 CD 患者发现定期接受专科随访很有帮助，特别是对疾病活动及其并发症的生化评估。此外，还重视有关 CD 研究和长期并发症的信息。
