ArticlePloS one2016
Information Needs and Concerns of Patients with Inflammatory Bowel Disease: What Can We Learn from Participants in a Bilingual Clinical Cohort?
Article in PloS one, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 24 papers, 1 of them a synthesis that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
24 citing papers in PubMed, 1 synthesis or guideline pooled it, 51 citations in OpenAlex.
- Patient Perspectives and Expectations in Inflammatory Bowel Disease: A Systematic Review.Digestive diseases and sciences · 2022Pooled it
- Patients' experiences and practices of medication literacy in inflammatory bowel disease: a qualitative study.Frontiers in pharmacology · 2025Article
- "I Probably Am Being a Naughty Boy, But…" Reasons for Non-Adherence to Prescribed Medication, as Perceived by People Living with Inflammatory Bowel Disease: A Qualitative Study.Patient preference and adherence · 2025Article
- Designing the Essential Informational Needs of a Smartphone Application for Self-Management of Patients With Inflammatory Bowel Disease.Health science reports · 2024Article
- Article
- Exploring the foundations of a digital health information service for patients with inflammatory bowel disease: a mixed method study in Gravitate-Health.BMC gastroenterology · 2024Article
- Characteristics and associated factors of health information-seeking behaviour among patients with inflammatory bowel disease in the digital era: a scoping review.BMC public health · 2024Article
- Development and Validation of an Educational Book on Self-Management in Inflammatory Bowel Disease Based on Patient Preferences and Expert Opinions: A Methodological Study.Journal of clinical medicine · 2023Article
- Personalized Dietary Regimens for Inflammatory Bowel Disease: Current Knowledge and Future Perspectives.Pharmacogenomics and personalized medicine · 2023Review
- Identification of the informational and supportive needs of patients diagnosed with inflammatory bowel disease: a scoping review.Frontiers in psychology · 2023Article
- Expert opinions on informational and supportive needs and sources of obtaining information in patients with inflammatory bowel disease: a Delphi consensus study.Frontiers in psychology · 2023Article
- Assessment of inflammatory bowel disease educational videos for increasing patient engagement and family and friends' levels of understanding.Patient education and counseling · 2022Article
- Assessment of patients' understanding of inflammatory bowel diseases: Development and validation of a questionnaire.United European gastroenterology journal · 2022Article
- Understanding the surgical experience for Black and White patients with inflammatory bowel disease (IBD): The importance of health literacy.American journal of surgery · 2022Article
- Physician-patient communication affects patient satisfaction in treatment decision-making: a structural equation modelling analysis of a web-based survey in patients with ulcerative colitis.Journal of gastroenterology · 2021Article
- Ulcerative Colitis Narrative Global Survey Findings: Communication Gaps and Agreements Between Patients and Physicians.Inflammatory bowel diseases · 2021Article
- Let Food Be Thy Medicine-Its Role in Crohn's Disease.Nutrients · 2021Review
- Developing Patient-Centered Inflammatory Bowel Disease-Related Educational Videos Optimized for Social Media: Qualitative Research Study.JMIR medical education · 2020Article
- Validation of a New Diabetic Retinopathy Knowledge and Attitudes Questionnaire in People with Diabetic Retinopathy and Diabetic Macular Edema.Translational vision science & technology · 2020Article
- Inflammatory bowel disease patient profiles are related to specific information needs: A nationwide survey.World journal of gastroenterology · 2019Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors at 5 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundInflammatory Bowel Disease (IBD) patients are confronted with needs and concerns related to their disease.
aimTo explore information expectations of patients included in a national bilingual IBD cohort in Switzerland (SIBDC).
methodsThis 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.
results728 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.
conclusionsInformation 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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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.