Self-reported dietary adherence, disease-specific symptoms, and quality of life are associated with healthcare provider follow-up in celiac disease

BMC Gastroenterology

Research Article

Kristin N. Voorhees¹  Anne R. Lee²  Jacob J. Hughey³  Ciaran P. Kelly⁴  Detlef Schuppan⁵  Bonnie K. Ray⁶ 

[1] Beyond Celiac, Ambler, PA, USA;Celiac Disease Center, Columbia University Medical Center, New York, NY, USA;Department of Biomedical Informatics, Vanderbilt University School of Medicine, Nashville, TN, USA;Division of Gastroenterology, Beth Israel Deaconess Medical Center, Boston, MA, USA;Division of Gastroenterology, Beth Israel Deaconess Medical Center, Boston, MA, USA;Institute of Translational Immunology, University Medical Center, Mainz, Germany;Talkspace, New York, NY, USA;

关键词: Celiac disease;    Diagnosis;    Disease management;    Genetic testing;    Gluten-free diet;    Healthcare provider;    Patient-reported factors;    Quality of life;    Symptoms;    Well-being;   

DOI  :  10.1186/s12876-017-0713-7

 received in 2017-05-14, accepted in 2017-11-27,  发布年份 2017

来源: Springer

【 摘 要 】

BackgroundThe 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.MethodsWe 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).ResultsOverall, 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.ConclusionsOur 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.

【 授权许可】

CC BY   
© The Author(s). 2017