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Patient Perspectives on the Long-term Management of Celiac Disease
Journal of Clinical Gastroenterology ( IF 2.9 ) Pub Date : 2022-11-01 , DOI: 10.1097/mcg.0000000000001584
Evan D Elias 1 , Jocelyn A Silvester 2 , Charles N Bernstein 1 , Lisa N Rigaux 3 , Lesley A Graff 4 , Donald R Duerksen 1, 3
Affiliation  

Goal: 

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.

Background: 

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.

Study: 

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.”

Results: 

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.

Conclusions: 

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.



中文翻译:

患者对乳糜泻长期治疗的看法

目标: 

本研究的目的是调查患有乳糜泻 (CD) 的成人对随访具体方面的效用和信息需求。

背景: 

目前,克罗恩病的治疗方法是严格避免麸质。尽管这让患者承担了疾病管理的责任,但患者对 CD 护理的看法尚未得到正式评估。

学习: 

马尼托巴乳糜泻队列前瞻性地招募了利用血清学和组织学方法新诊断患有乳糜泻的成年人。在为期 24 个月的研究访问中,参与者对 CD 护理各方面的实用性进行了 5 分评分,以“一点用处”和“非常有用”为基础,并对 CD 相关主题信息的有用性进行了 6 分评分。点尺度以“完全没有帮助”和“非常有帮助”为基础。

结果: 

该在线调查由 211 名队列成员中的 149 名完成[中位年龄 40 岁(四分位数范围 30 至 56)岁;68% 为女性]。坚持无麸质饮食效果很好。大多数参与者 (87%) 回答说,他们应该定期就 CD 进行医疗随访,最好每 6 个月 (26%) 或 12 个月 (48%) 进行一次。血液检查是评价最高的护理内容(78% 的受访者评分≥4/5),其次是询问维生素和补充剂的机会 (50%)、症状审查 (47%) 和 CD 研究信息(44%)。饮食审查被认为没有帮助。

结论: 

诊断两年后,大多数克罗恩病患者发现定期的专家随访很有帮助,特别是对疾病活动及其并发症的生化评估。此外,关于克罗恩病的研究和长期并发症的信息也很有价值。

更新日期:2022-10-13
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