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Information needs and concerns of patients with inflammatory bowel disease: what can we learn from participants in a bilingual clinical cohort?


Pittet, Valérie; Vaucher, Carla; Maillard, Michel H; Girardin, Marc; de Saussure, Philippe; Burnand, Bernard; Rogler, Gerhard; Michetti, Pierre (2016). Information needs and concerns of patients with inflammatory bowel disease: what can we learn from participants in a bilingual clinical cohort? PLoS ONE, 11(3):e0150620.

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.

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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Additional indexing

Item Type:Journal Article, refereed, original work
Communities & Collections:04 Faculty of Medicine > University Hospital Zurich > Clinic for Gastroenterology and Hepatology
Dewey Decimal Classification:610 Medicine & health
Language:German
Date:2016
Deposited On:13 Feb 2017 15:00
Last Modified:07 Aug 2017 13:06
Publisher:Public Library of Science (PLoS)
ISSN:1932-6203
Free access at:PubMed ID. An embargo period may apply.
Publisher DOI:https://doi.org/10.1371/journal.pone.0150620
PubMed ID:26939069

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