‘Symptom-free’ when inflammatory bowel disease is in remission: Expectations raised by online resources

TY - JOUR

T1 - ‘Symptom-free’ when inflammatory bowel disease is in remission

T2 - Expectations raised by online resources

AU - Huisman, Danielle

AU - Burrows, Taylor

AU - Sweeney, Louise

AU - Bannister, Kirsty

AU - Moss-Morris, Rona

N1 - Publisher Copyright: © 2023

PY - 2024/2

Y1 - 2024/2

N2 - Objectives: Up to 60% of patients with inflammatory bowel disease (IBD) experience symptoms when in remission. Qualitative research suggests patients seldom feel they receive adequate explanations for these. This study explores how, and how often, ongoing symptoms during remission are represented on readily searchable patient websites. Methods: Bing, Google, and Yahoo were searched for websites providing medical information about IBD. Thematic analysis was used to inductively explore themes around symptoms during quiescent IBD, followed by deductive content analysis to quantify core themes. Results: Results indicated that remission is commonly defined as “few or no symptoms” and that there is limited information available on symptoms during remission. 55.6% of IBD websites provided a definition of remission based on symptom control only, while 44.4% also incorporated inflammatory control. The few websites that mentioned that symptoms may continue during remission (21.7%) related these to IBS. Conclusions: Current website information is predominantly biomedical and fails to adequately explain how symptoms may persist during remission and how IBS and IBD may be linked. Practice Implications: Lack of explanatory models of symptoms in remission may lead to distress and increase anxiety about symptoms. Clearer explanations of these symptoms are needed.

AB - Objectives: Up to 60% of patients with inflammatory bowel disease (IBD) experience symptoms when in remission. Qualitative research suggests patients seldom feel they receive adequate explanations for these. This study explores how, and how often, ongoing symptoms during remission are represented on readily searchable patient websites. Methods: Bing, Google, and Yahoo were searched for websites providing medical information about IBD. Thematic analysis was used to inductively explore themes around symptoms during quiescent IBD, followed by deductive content analysis to quantify core themes. Results: Results indicated that remission is commonly defined as “few or no symptoms” and that there is limited information available on symptoms during remission. 55.6% of IBD websites provided a definition of remission based on symptom control only, while 44.4% also incorporated inflammatory control. The few websites that mentioned that symptoms may continue during remission (21.7%) related these to IBS. Conclusions: Current website information is predominantly biomedical and fails to adequately explain how symptoms may persist during remission and how IBS and IBD may be linked. Practice Implications: Lack of explanatory models of symptoms in remission may lead to distress and increase anxiety about symptoms. Clearer explanations of these symptoms are needed.

KW - Abdominal pain

KW - Health literacy

KW - Inflammatory bowel disease

KW - Irritable bowel disease

KW - Online resources

KW - Patient education

KW - Qualitative research

KW - Remission

UR - http://www.scopus.com/inward/record.url?scp=85176587216&partnerID=8YFLogxK

U2 - 10.1016/j.pec.2023.108034

DO - 10.1016/j.pec.2023.108034

M3 - Article

C2 - 37952400

AN - SCOPUS:85176587216

SN - 0738-3991

VL - 119

JO - Patient Education and Counseling

JF - Patient Education and Counseling

M1 - 108034

ER -