Gluten 3S Research Group, Department of Nutrition and Food Science, Faculty of Pharmacy, University of the Basque Country UPV/EHU, 01006 Vitoria-Gasteiz, Spain.
Bioaraba, Nutrition and Food Safety Group, 01009 Vitoria-Gasteiz, Spain.
Nutrients. 2023 Aug 22;15(17):3681. doi: 10.3390/nu15173681.
The treatment for celiac disease (CD) involves a strict gluten-free diet, which can be challenging and lead to questions for patients. Pinpointing these uncertainties can enable the creation of efficient educational resources. In this study, a questionnaire was specifically designed to gain insights into the knowledge, concerns, and needs of individuals with CD and their supporters. The questionnaire was distributed through the Instagram social network and received adequate responses from 300 participants, 258 (86%) being female and 152 (50.7%) falling in the age range of 25-44 years. The concerns of individuals with celiac disease and celiac supporters were rated on a 1-4 scale, with a mean score of 3.5 indicating significant concern. A total of 255 (85%) of all participants expressed that their principal concern was the social limitations they faced, such as difficulties in eating out and sharing food with others. Every participant evaluated their overall disease knowledge, averaging at 2.92 out of 4, indicating a reasonable level of awareness. When asked if they believed that improving general knowledge about CD in the general population would enhance their quality of life, the vast majority responded affirmatively. This finding underscores the importance of not only educating individuals with CD but also reaching out to the wider population, especially those who have a direct impact on the daily lives of individuals with CD, such as family members, friends, and food service providers.
乳糜泻的治疗方法包括严格的无麸质饮食,这可能具有挑战性,并导致患者产生疑问。准确把握这些不确定性,可以帮助我们创建有效的教育资源。在这项研究中,我们专门设计了一份问卷,以深入了解乳糜泻患者及其支持者的知识、关注点和需求。该问卷通过 Instagram 社交网络进行分发,共收到了 300 名参与者的有效回复,其中 258 名(86%)为女性,152 名(50.7%)年龄在 25-44 岁之间。乳糜泻患者和乳糜泻支持者的关注点通过 1-4 分制进行评分,平均得分为 3.5 分,表示存在显著的担忧。所有参与者中有 255 名(85%)表示,他们最主要的关注点是社会限制,例如外出就餐和与他人分享食物的困难。每位参与者都评估了他们对疾病的总体了解程度,平均得分为 4 分制中的 2.92 分,表明他们对疾病有一定的认知。当被问及他们是否认为提高普通人群对乳糜泻的普遍认识会提高他们的生活质量时,绝大多数人都给予了肯定的回答。这一发现强调了不仅要教育乳糜泻患者,还要向更广泛的人群普及相关知识的重要性,特别是那些对乳糜泻患者日常生活有直接影响的人群,如家庭成员、朋友和食品服务提供者。