Is There a Lack of Dietary Data Collection in Real-World IBD Studies? Literature Review and Future Considerations
Author(s)
Neil R. Brett, PhD1, Garthiga Manickam, PhD2, Marielle Bassel, BA1, Daniela Castano, MD3, John S. Sampalis, MSc, PhD1.
1PPD™ Observational Studies, Thermo Fisher Scientific, Montreal, QC, Canada, 2PPD™ Evidera™ Health Economics and Market Access, Thermo Fischer Scientific, Montreal, QC, Canada, 3Thermo Fisher Scientific, San Diego, CA, USA.
1PPD™ Observational Studies, Thermo Fisher Scientific, Montreal, QC, Canada, 2PPD™ Evidera™ Health Economics and Market Access, Thermo Fischer Scientific, Montreal, QC, Canada, 3Thermo Fisher Scientific, San Diego, CA, USA.
OBJECTIVES: Leading gastroenterological associations have updated dietary recommendations for inflammatory bowel disease (IBD) to support disease management. Real-world (RW) dietary data are crucial for understanding IBD treatment outcomes but are infrequently collected due to burden/cost. We describe dietary data collection methods and purposes in observational IBD studies and provide considerations to enhance future research.
METHODS: A targeted literature review was performed in Embase and MEDLINE, with abstracts screened to identify observational IBD studies collecting dietary data and describe data collection methods. Mitigations for dietary collection challenges and improving data quality are discussed.
RESULTS: Out of 335 screened abstracts, 164 were excluded (not observational, not in IBD and/or not collecting dietary data), and 171 were included: 40(23.4%) studies in Crohn’s disease (CD), 24(14.0%) in ulcerative colitis (UC), and 107(62.6%) including both CD/UC. 119 studies (69.6%) focused on adults, while the remainder included children or both age groups. Data collection methods included food frequency questionnaires (FFQs) (69[40.4%]), food diaries (57[33.3%]), both (18[10.5%]), or other methods (27[15.8%]). 15 studies (8.8%) investigated outcomes of dietary therapies, while only 2(1.2%) collected dietary data when assessing drug treatment outcomes (using diet as an analyses covariate). Choice of data collection methods should consider study objectives/methodology, age, study setting, and geography among other factors. Prospective studies may use longitudinal FFQs for lower burden and generalized usual intake collection. Retrospective studies can leverage cross-sectional FFQs with recall periods up to 1 year if patients are contacted and consented. For food diaries, dietitian support at medical centers, and nutritional data collection platforms can help to simplify data entry and analysis.
CONCLUSIONS: Dietary data collection methods varied among observational IBD studies and few collected dietary data when assessing treatment outcomes. Because of the importance of diet in IBD, observational IBD research should consider including dietary data, with methodology considering data quality and patient burden.
METHODS: A targeted literature review was performed in Embase and MEDLINE, with abstracts screened to identify observational IBD studies collecting dietary data and describe data collection methods. Mitigations for dietary collection challenges and improving data quality are discussed.
RESULTS: Out of 335 screened abstracts, 164 were excluded (not observational, not in IBD and/or not collecting dietary data), and 171 were included: 40(23.4%) studies in Crohn’s disease (CD), 24(14.0%) in ulcerative colitis (UC), and 107(62.6%) including both CD/UC. 119 studies (69.6%) focused on adults, while the remainder included children or both age groups. Data collection methods included food frequency questionnaires (FFQs) (69[40.4%]), food diaries (57[33.3%]), both (18[10.5%]), or other methods (27[15.8%]). 15 studies (8.8%) investigated outcomes of dietary therapies, while only 2(1.2%) collected dietary data when assessing drug treatment outcomes (using diet as an analyses covariate). Choice of data collection methods should consider study objectives/methodology, age, study setting, and geography among other factors. Prospective studies may use longitudinal FFQs for lower burden and generalized usual intake collection. Retrospective studies can leverage cross-sectional FFQs with recall periods up to 1 year if patients are contacted and consented. For food diaries, dietitian support at medical centers, and nutritional data collection platforms can help to simplify data entry and analysis.
CONCLUSIONS: Dietary data collection methods varied among observational IBD studies and few collected dietary data when assessing treatment outcomes. Because of the importance of diet in IBD, observational IBD research should consider including dietary data, with methodology considering data quality and patient burden.
Conference/Value in Health Info
2025-11, ISPOR Europe 2025, Glasgow, Scotland
Value in Health, Volume 28, Issue S2
Code
PCR147
Topic
Patient-Centered Research, Study Approaches
Topic Subcategory
Patient-reported Outcomes & Quality of Life Outcomes
Disease
Gastrointestinal Disorders, Nutrition