ArticleCanadian journal of gastroenterology = Journal canadien de gastroenterologie2012
The information needs and preferences of persons with longstanding inflammatory bowel disease.
Article in Canadian journal of gastroenterology = Journal canadien de gastroenterologie, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT03262649 (Manitoba Inflammatory Bowel Disease Cohort Study), which is not on this map. Cited by 42 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.
Manitoba Inflammatory Bowel Disease Cohort Study
Who cites it
42 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Patient Perspectives and Expectations in Inflammatory Bowel Disease: A Systematic Review.Digestive diseases and sciences · 2022Pooled it
- Trial
- Dietary Analyses and Personalized Advice in Patients with Inflammatory Bowel Disease: The DAPA Study.Nutrients · 2026Article
- The PANACEA Project: a multinational model for digital health literacy in inflammatory bowel disease.Crohn's & colitis 360 · 2026Article
- Boosting mental health and quality of life for people living with inflammatory bowel disease using a mobile app and online health coaching.Crohn's & colitis 360 · 2026Article
- Mental Health Literacy and Information Needs of Young Adults With First Episode Psychosis and Their Support Persons.Early intervention in psychiatry · 2026Article
- Social Listening as a Tool to Understand Nutrition-Related Information Needs: A Case Study in Inflammatory Bowel Disease.Journal of human nutrition and dietetics : the official journal of the British Dietetic Association · 2025Article
- Nutritional Deficiencies and Reduced Bone Mineralization in Ulcerative Colitis.Journal of clinical medicine · 2025Review
- Use of Complementary and Alternative Therapies in People with Inflammatory Bowel Disease.International journal of environmental research and public health · 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
- Inflammatory bowel disease patients' perspectives of non-medical needs.BMC gastroenterology · 2024Review
- 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
- Should Inflammatory Bowel Disease Clinicians Provide Their Patients with e-Health Resources? Patients' and Professionals' Perspectives.Telemedicine journal and e-health : the official journal of the American Telemedicine Association · 2023Article
- Identification and Evaluation of Mobile Applications for Self-Management of Diet and Lifestyle for Patients with Inflammatory Bowel Disease.Journal of the Canadian Association of Gastroenterology · 2023Article
- Identification of the informational and supportive needs of patients diagnosed with inflammatory bowel disease: a scoping review.Frontiers in psychology · 2023Article
- Article
- Treatment goals in IBD: A perspective from patients and their partners.PEC innovation · 2022Article
- Development of inflammatory bowel disease patient education and medical information sheets: serving an unmet need.Internal medicine journal · 2022Article
- Assessment of inflammatory bowel disease educational videos for increasing patient engagement and family and friends' levels of understanding.Patient education and counseling · 2022Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
10 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundUnderstanding the information needs and preferred vehicles of information delivery to patients with inflammatory bowel disease (IBD) will enhance their care.
objectiveTo survey persons with longstanding IBD as to their information needs and preferred vehicles of information delivery.
methodsThe population-based Manitoba IBD Cohort (n=271, mean disease duration 11 years) was surveyed to assess its information needs across 23 issues, both retrospectively at the time of diagnosis and currently.
resultsMost participants (64%) were initially diagnosed by a gastroenterologist, or otherwise by a family physician (19%) or surgeon (12%). Recalling time of diagnosis, at least 80% rated as very important information about common symptoms of IBD, possible complications, long-term prognosis, medication side effects, self management of symptoms and when to involve the doctor, yet only 10% to 36% believed they received the right amount of information about these issues. Dietary guidance was also regarded as important by 80% to 89%, yet only 8% to 16% received the correct amount of information. Regarding current needs, a large proportion believed it would be very helpful to have more information about long-term prognosis (66%) and diet considerations (60% to 68%). The following information sources were regarded as very acceptable: medical specialist (81%); brochure (79%); family doctor (64%); and website (64%), with 51% ranking the medical specialist as the first choice. In a comparison of the responses of this cohort to those of a recently diagnosed sample, there was remarkable consistency in the information needs and most desired sources of information. DISCUSSION: In the present population-based cohort with longstanding disease, dietary information was regarded as the least adequately addressed. There was clear openness to receiving information through other routes than just the medical specialist, suggesting that optimizing brochures and websites would be an important adjunct source of information.
conclusionApproximately 10 years after diagnosis, only a small percentage of persons with IBD believed they received the correct amount of information about the issues they regarded as most important to have discussed at diagnosis.
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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.