The information and support needs of patients living with inflammatory bowel disease: A qualitative study

Abstract

Objectives To explore patients’ experiences of living with inflammatory bowel disease (IBD) with a focus on their information and support needs. Methods Qualitative interview study involving adults diagnosed with IBD recruited through social media. Interviews were audio recorded, transcribed and data were analysed thematically. Results Interviews with 15 patients (9 females, 6 males) highlighted how misdiagnosis or hesitation to diagnose had caused frustration and anxiety. Once diagnosed, only a few participants received detailed information about IBD from their doctor. Negative experiences shared on social media caused initial anxiety, as individuals assumed that they may have a similar experience, yet online communities enabled insights into the experiences of others, helping patients adjust to living with IBD. Participants described both positive and negative impacts of living with IBD, including improved confidence and periods of anxiety. Discussion: Our findings highlight the importance of clear information and support from health professionals, as well as the benefits of online communities for ongoing support. At the point of diagnosis, patients would benefit from information about what IBD is, as well as how it may impact day to day life from doctors so that social media is not the only source of initial information about IBD.

A scoping review of the dietary information needs of people with inflammatory bowel disease

“…Dietary information needs appear to be influenced by stages of IBD: pre-diagnosis, diagnosis, relapse and remission. 20,21,23,27,44,47,50,53,60,63,64,67,70 However, most studies report on the perceptions of the role of diet and food in IBD, and provide a description of lived experiences, rather than what dietary information is desired/ needed. 23,50,53,63,64,67 The dietary information needs at pre-diagnosis and remission were scarcely described in the literature.…”

“…19,21,47,50,53,55,63,64,66,67 Notably, only one of the included studies reported no differences in information seeking behaviour during relapse and remission. 22 Eleven studies 20,23,44,45,47,50,53,60,63,70 and the Crohn's and Colitis New Zealand survey 67 provided some detail as to the dietary information needs of individuals with IBD at diagnosis and relapse (Table 2). Topics of interest related to knowledge of specific foods or food components to avoid Remission is reported as % when available.…”

“…to reduce symptoms, 20,41,47 strategies and information on maintaining nutritional adequacy, such as what foods provide the best nutritional value, 20,21 use of nutrition supplements, 21 recommended portion sizes, frequency of meals, 47 healthy eating with IBD, 42,67,70 impact of eating on IBD and practical and structured advice to support implementation of information for daily selfmanagement. 19,21,47,49,50,53,55,60,63,64 The type of IBD, that is Crohn's disease and ulcerative colitis, was not described as influencing type of dietary information needed.…”

Development and Validation of a Deep Neural Network for Accurate Identification of Endoscopic Images From Patients With Ulcerative Colitis and Crohn's Disease

“…Therefore, there is a need in gastroenterology healthcare to improve the accuracy of the diagnosis of IBD and to distinguish UC and CD with a sensitive and cost-effective system. This may improve the patient's quality of life and provide endoscopists with medical devices for improving the accuracy and efficiency of diagnosis and treatment (17).…”

Codesign and implementation of an equity-promoting national health literacy programme for people living with inflammatory bowel disease (IBD): a protocol for the application of the Optimising Health Literacy and Access (Ophelia) process

“… 22 Despite the importance of these information needs, people living with IBD report that access to information is lacking, especially for people experiencing vulnerability (eg, young people). 23 25 …”