Information Needs and Concerns of Patients with Inflammatory Bowel Disease: What Can We Learn from Participants in a Bilingual Clinical Cohort?

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State: Public
Version: author
Serval ID
serval:BIB_EA823D0AE456
Type
Article: article from journal or magazin.
Collection
Publications
Title
Information Needs and Concerns of Patients with Inflammatory Bowel Disease: What Can We Learn from Participants in a Bilingual Clinical Cohort?
Journal
Plos One
Author(s)
Pittet V., Vaucher C., Maillard M.H., Girardin M., de Saussure P., Burnand B., Rogler G., Michetti P.
ISSN
1932-6203 (Electronic)
ISSN-L
1932-6203
Publication state
Published
Issued date
2016
Peer-reviewed
Oui
Volume
11
Number
3
Pages
e0150620
Language
english
Notes
Publication types: Journal Article
Publication Status: epublish
Abstract
BACKGROUND: Inflammatory Bowel Disease (IBD) patients are confronted with needs and concerns related to their disease.
AIM: To explore information expectations of patients included in a national bilingual IBD cohort in Switzerland (SIBDC).
METHODS: This is a mixed-methods study, comprising 1) a semi-narrative survey sent to 1506 patients from the SIBDC and 2) two focus groups conducted with 14 patients to explore and assess the relevance of the survey's findings. Data collected within the framework of the SIBDC was used to characterize survey's responders.
RESULTS: 728 patients (48%) replied to the survey: 52.5% females, 56% Crohn's disease (CD), 87% secondary/tertiary level educated, 70% full/part-time employed. On average, 47% of patients sought for information, regardless of the disease stage; 27% of them were dissatisfied with information received at the time of first symptoms. During flares, 43% were concerned about drugs and therapies; in remission, 57% had concerns on research and developments; 27% searched for information linked to daily disease management. Information-seeking increased when active disease, for CD with high levels of perceived stress (OR = 2.47; p = 0.003), and for all with higher posttraumatic stress symptoms. The focus groups confirmed a perceived lack of information about general functioning, disease course, treatments and their risks, extra-intestinal symptoms and manifestations.
CONCLUSIONS: Information remains insufficient for IBD patients. Lack of information in specific domains can potentially cause stress and hinder detection of symptoms. Better information should be considered as a potentially important component in improving patients' outcomes in IBD.
Pubmed
Web of science
Open Access
Yes
Create date
10/03/2016 18:33
Last modification date
20/08/2019 16:12
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