Hughey Jacob J, Ray Bonnie K, Lee Anne R, Voorhees Kristin N, Kelly Ciaran P, Schuppan Detlef
Department of Biomedical Informatics, Vanderbilt University School of Medicine, Nashville, TN, USA.
Talkspace, New York, NY, USA.
BMC Gastroenterol. 2017 Dec 11;17(1):156. doi: 10.1186/s12876-017-0713-7.
The only treatment for celiac disease (CeD) is a lifelong gluten-free diet (GFD). The restrictive nature of the GFD makes adherence a challenge. As an integral part of CeD management, multiple professional organizations recommend regular follow-up with a healthcare provider (HCP). Many CeD patients also participate in patient advocacy groups (PAGs) for education and support. Previous work found that follow-up of CeD patients is highly variable. Here we investigated the self-reported factors associated with HCP follow-up among individuals diagnosed with CeD who participate in a PAG.
We conducted a survey of members of Beyond Celiac (a PAG), collecting responses from 1832 U.S. adults ages 19-65 who reported having CeD. The survey queried HCP follow-up related to CeD and included validated instruments for dietary adherence (CDAT), disease-specific symptoms (CSI), and quality of life (CD-QOL).
Overall, 27% of respondents diagnosed with CeD at least five years ago reported that they had not visited an HCP about CeD in the last five years. The most frequent reason for not visiting an HCP was "doing fine on my own" (47.6%). Using multiple logistic regression, we identified significant associations between whether a respondent reported visiting an HCP about CeD in the last five years and the scores for all three validated instruments. In particular, as disease-specific symptoms and quality of life worsened, the probability of having visited an HCP increased. Conversely, as dietary adherence worsened, the probability decreased.
Our results suggest that many individuals with CeD manage their disease without ongoing support from an HCP. Our results thus emphasize the need for greater access to high quality CeD care, and highlight an opportunity for PAGs to bring together patients and HCPs to improve management of CeD.
乳糜泻（CeD）的唯一治疗方法是终身无麸质饮食（GFD）。GFD的限制性使得坚持成为一项挑战。作为CeD管理的一个组成部分，多个专业组织建议定期与医疗服务提供者（HCP）进行随访。许多CeD患者还参加患者倡导组织（PAG）以获取教育和支持。先前的研究发现，CeD患者的随访情况差异很大。在此，我们调查了参与PAG的CeD确诊个体中与HCP随访相关的自我报告因素。
我们对“超越乳糜泻”（一个PAG）的成员进行了一项调查，收集了1832名年龄在19 - 65岁之间、报告患有CeD的美国成年人的回复。该调查询问了与CeD相关的HCP随访情况，并包括用于饮食依从性（CDAT）、疾病特异性症状（CSI）和生活质量（CD - QOL）的经过验证的工具。
总体而言，那些至少在五年前被诊断出患有CeD的受访者中，有27%报告称在过去五年里没有就CeD问题拜访过HCP。未拜访HCP的最常见原因是“自己感觉良好”（47.6%）。通过多元逻辑回归分析，我们确定了在过去五年里受访者是否报告就CeD问题拜访过HCP与所有三个经过验证的工具的得分之间存在显著关联。特别是，随着疾病特异性症状和生活质量变差，拜访HCP的可能性增加。相反，随着饮食依从性变差，可能性降低。
我们的结果表明，许多CeD患者在没有HCP持续支持的情况下管理自己的疾病。因此，我们的结果强调了需要更多地获得高质量的CeD护理，并突出了PAG将患者和HCP聚集在一起以改善CeD管理的机会。
