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. 2016 Mar 3;11(3):e0150620.
doi: 10.1371/journal.pone.0150620. eCollection 2016.

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

Valérie Pittet  1 , Carla Vaucher  1 , Michel H Maillard  2 , Marc Girardin  3 , Philippe de Saussure  3 , Bernard Burnand  1 , Gerhard Rogler  4 , Pierre Michetti  5
Affiliations

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

Valérie Pittet et al. PLoS One. .

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.

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Conflict of interest statement

Competing Interests: The authors have declared that no competing interests exist.

Figures

Fig 1
Fig 1. Topics of information searched according to disease phases.
Fig 2
Fig 2
Topics of information searched at diagnosis, according to gender (A) and type of disease (B).
Fig 3
Fig 3
Topics of information searched during active disease phases by gender (A), type of disease (B) and age (C).
Fig 4
Fig 4
Topics of information searched when in remission by gender (A), type of disease (B) and age (C).
See this image and copyright information in PMC

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