Disease Uncertainty and Quality of Life Among Patients With Inflammatory Bowel Disease: The Mediating Role of Anxiety and Health Literacy
Keywords:
Inflammatory bowel disease, disease uncertainty, quality of life, anxiety, health literacy, mediation modelAbstract
Objective: This study aimed to examine the relationship between disease uncertainty and quality of life among Canadian adults with inflammatory bowel disease and to determine the mediating roles of anxiety and health literacy in this relationship.
Methods and Materials: This descriptive-correlational study was conducted using a cross-sectional predictive design. The study population consisted of adults with inflammatory bowel disease in Canada, and the final sample included 326 patients recruited from gastroenterology clinics, outpatient digestive disease centers, and patient support networks. Data were collected using a demographic and clinical information form, the Mishel Uncertainty in Illness Scale, the Inflammatory Bowel Disease Questionnaire, the Generalized Anxiety Disorder-7 scale, and the Health Literacy Questionnaire. Data were analyzed using SPSS and AMOS. Pearson correlation coefficients were used to examine relationships among the variables, and structural equation modeling was applied to test the direct and indirect effects of disease uncertainty on quality of life through anxiety and health literacy. The significance of indirect effects was examined using the bootstrap method with 5,000 resamples and 95% confidence intervals.
Findings: Disease uncertainty was significantly and negatively correlated with quality of life (r = -0.61, p < 0.001) and health literacy (r = -0.49, p < 0.001), and significantly positively correlated with anxiety (r = 0.58, p < 0.001). Anxiety was negatively associated with quality of life (r = -0.67, p < 0.001), while health literacy was positively associated with quality of life (r = 0.52, p < 0.001). The structural model showed acceptable fit. Disease uncertainty had significant direct effects on anxiety (β = 0.58, p < 0.001), health literacy (β = -0.49, p < 0.001), and quality of life (β = -0.28, p < 0.001). Anxiety (β = -0.43, p < 0.001) and health literacy (β = 0.24, p < 0.001) significantly predicted quality of life. Bootstrap analysis confirmed significant indirect effects through anxiety and health literacy.
Conclusion: Disease uncertainty was associated with poorer quality of life among patients with inflammatory bowel disease, and this relationship was partially mediated by increased anxiety and reduced health literacy.
Downloads
References
Almarzouki, A. F., Alluhaibi, W., Salman, B., Almuhaiyawi, M., Alreemi, M., & Alsahafi, M. (2024). The Impact of Cognitive Functions, Psychological Disorders, and Coping Strategies on Quality of Life and Disease Outcomes in Patients With Inflammatory Bowel Diseases: A Cross-Sectional Study. Medicine, 103(30), e38982. https://doi.org/10.1097/md.0000000000038982
Avest, M. M. t., Annelieke, S. M. v. V., Speckens, A. E., Dijkstra, G., Dresler, M., Horjus, C. S., Römkens, T. E. H., Witteman, E. M., Dop, W. A. v., Bredero, Q. M., Nissen, L. H., & Huijbers, M. J. (2023). Effectiveness of Mindfulness-Based Cognitive Therapy in Reducing Psychological Distress and Improving Sleep in Patients With Inflammatory Bowel Disease: Study Protocol for a Multicentre Randomised Controlled Trial (MindIBD). https://doi.org/10.21203/rs.3.rs-2572155/v1
Barnes, A., Bryant, R. V., Mukherjee, S., Spizzo, P., & Mountifield, R. (2024). Sleep Quality Is Associated With Reduced Quality of Life in Inflammatory Bowel Disease Through Its Interaction With Pain. JGH Open, 8(8). https://doi.org/10.1002/jgh3.70021
Bartocci, B., Buono, A. D., Gabbiadini, R., Busacca, A., Quadarella, A., Repici, A., Mencaglia, E., Gasparini, L., & Armuzzi, A. (2023). Mental Illnesses in Inflammatory Bowel Diseases: Mens Sana in Corpore Sano. Medicina, 59(4), 682. https://doi.org/10.3390/medicina59040682
Chappell, K. D., Chinbaatar, O., Goodman, K. J., & Kroeker, K. I. (2025). The Future of Telehealth‐Based Psychological and Mind–Body Interventions for People With Inflammatory Bowel Disease: A Systematic Review. Journal of Digestive Diseases, 26(3-4), 100-112. https://doi.org/10.1111/1751-2980.13342
Cox, S., Czuber‐Dochan, W., Wall, C., Clarke, H., Drysdale, C., Lomer, M., Lindsay, J. O., & Whelan, K. (2022). Improving Food-Related Quality of Life in Inflammatory Bowel Disease Through a Novel Web Resource: A Feasibility Randomised Controlled Trial. Nutrients, 14(20), 4292. https://doi.org/10.3390/nu14204292
Dávid, A., Szántó, K., Fábián, A., Resál, T., Farkas, K., Hallgató, E., Miheller, P., Sarlós, P., Molnár, T., & Rafael, B. (2023). Psychological Characteristics of Patients With Inflammatory Bowel Disease During the First Wave of COVID-19. Gastroenterology Review, 18(3), 334-343. https://doi.org/10.5114/pg.2023.131398
Evans, S., Olive, L., Dober, M., Knowles, S. R., Fuller‐Tyszkiewicz, M., Eric, O., Gibson, P. G., Raven, L., Gearry, R. B., McCombie, A., Niekerk, L. V., Chesterman, S., Romano, D., & Mikocka‐Walus, A. (2022). Acceptance Commitment Therapy (ACT) for Psychological Distress Associated With Inflammatory Bowel Disease (IBD): Protocol for a Feasibility Trial of the ACTforIBD Programme. BMJ open, 12(6), e060272. https://doi.org/10.1136/bmjopen-2021-060272
Gavrilescu, O., Prelipcean, C. C., Dranga, M., Popa, I. V., & Mihai, C. (2022). Impact of COVID-19 Pandemic on the Quality of Life of IBD Patients. Medicina, 58(5), 562. https://doi.org/10.3390/medicina58050562
Graff, L. A., Fowler, S., Jones, J., Benchimol, E. I., Bitton, A., Huang, J. G., Kuenzig, M. E., Kaplan, G. G., Lee, K., Mukhtar, M. S., Tandon, P., Targownik, L. E., Windsor, J. W., & Bernstein, Ç. N. (2021). Crohn’s and Colitis Canada’s 2021 Impact of COVID-19 and Inflammatory Bowel Disease in Canada: Mental Health and Quality of Life. Journal of the Canadian Association of Gastroenterology, 4(Supplement_2), S46-S53. https://doi.org/10.1093/jcag/gwab031
Hayes, B., Apputhurai, P., Mikocka‐Walus, A., Acosta, M. B., Bernstein, Ç. N., Burgell, R., Burisch, J., Evertsz, F. B., Ferreira, N., Graff, L. A., Trindade, I. A., Gearry, R. B., Lo, B., Mokrowiecka, A., Moser, G., Petrik, M., Stengel, A., & Knowles, S. R. (2021). Extending the Common Sense Model to Explore the Impact of the Fear of COVID-19 on Quality of Life in an International Inflammatory Bowel Disease Cohort. Journal of Clinical Psychology in Medical Settings, 29(3), 678-688. https://doi.org/10.1007/s10880-021-09823-y
Herrera‐deGuise, C., Mayorga, L., Ruiz, X. S., Borruel, N., Ibarz, A., Martínez, Z. P., & Casellas, F. (2022). Health-Related Quality of Life Decline in Clinically Stable Inflammatory Bowel Disease Patients During the COVID-19 Outbreak. Revista Española De Enfermedades Digestivas. https://doi.org/10.17235/reed.2022.8668/2022
Humbel, F., Rieder, J., Franc, Y., Juillerat, P., Scharl, M., Misselwitz, B., Schreiner, P., Begré, S., Rogler, G., Känel, R. v., Yılmaz, B., & Biedermann, L. (2020). Association of Alterations in Intestinal Microbiota With Impaired Psychological Function in Patients With Inflammatory Bowel Diseases in Remission. Clinical Gastroenterology and Hepatology, 18(9), 2019-2029.e2011. https://doi.org/10.1016/j.cgh.2019.09.022
Kok, K., Byrne, P., Ibarra, A. R., Martin, P., & Rampton, D. S. (2022). Understanding and Managing Psychological Disorders in Patients With Inflammatory Bowel Disease: A Practical Guide. Frontline Gastroenterology, 14(1), 78-86. https://doi.org/10.1136/flgastro-2022-102094
Lang, B. M., Ledergerber, M., Jordi, S. B. U., Krupka, N., Biedermann, L., Schreiner, P., Juillerat, P., Wyss, J., Vavricka, S. R., Zeitz, J., Känel, R. v., Rogler, G., Beerenwinkel, N., & Misselwitz, B. (2023). Because I’m Happy – Positive Affect and Its Predictive Value for Future Disease Activity in Patients With Inflammatory Bowel Diseases: A Retrospective Cohort Study. Therapeutic Advances in Gastroenterology, 16. https://doi.org/10.1177/17562848231179335
Liu, C., Zhang, J. X., Li, J. T., Wei, Y. P., Zhen, J. H., Wu, Y. R., He, H. D., Chen, Y., Sun, J. Y., Tan, C., Wang, S., Xiong, Q. T., Liao, F., Yang, X., An, P., Liu, Z. C., Jiang, C. Q., Shi, J., Wu, K., & Dong, W. (2024). Geographic Differences in Psychological Symptoms, Sleep Quality, and Quality of Life in Patients With Inflammatory Bowel Disease: A Multicenter Study in China. Journal of Digestive Diseases, 25(2), 109-122. https://doi.org/10.1111/1751-2980.13259
Marcon, T., Lorenzon, G., Zanotti, R., & Danielis, M. (2024). Anxiety and Work Disability in Patients With Immune-Mediated Inflammatory Diseases. Gastroenterology Nursing, 47(5), 349-357. https://doi.org/10.1097/sga.0000000000000819
Mules, T., Swaminathan, A., Hirschfeld, E., Borichevsky, G. M., Frampton, C., Day, A. S., & Gearry, R. B. (2021). The Impact of Disease Activity on Psychological Symptoms and Quality of Life in Patients With Inflammatory Bowel Disease—results From the Stress, Anxiety and Depression With Disease Activity (SADD) Study. Alimentary Pharmacology & Therapeutics, 55(2), 201-211. https://doi.org/10.1111/apt.16616
Napolitano, D., Vellone, E., Iovino, P., Scaldaferri, F., & Cocchieri, A. (2024). Self-Care in Patients Affected by Inflammatory Bowel Disease and Caregiver Contribution to Self-Care (IBD-SELF): A Protocol for a Longitudinal Observational Study. BMJ Open Gastroenterology, 11(1), e001510. https://doi.org/10.1136/bmjgast-2024-001510
Nazarian, A., Bishay, K., Gholami, R., Scaffidi, M. A., Khan, R., Cohen-Lyons, D., Griller, N., Satchwell, J. B., Baker, J. P., Grover, S. C., & Irvine, E. J. (2020). Factors Associated With Poor Quality of Life in a Canadian Cohort of Patients With Inflammatory Bowel Disease: A Cross-Sectional Study. Journal of the Canadian Association of Gastroenterology, 4(2), 91-96. https://doi.org/10.1093/jcag/gwaa014
Peng, Z., Yi, J., & Liu, X. (2022). A Low-Fodmap Diet Provides Benefits for Functional Gastrointestinal Symptoms but Not for Improving Stool Consistency and Mucosal Inflammation in IBD: A Systematic Review and Meta-Analysis. Nutrients, 14(10), 2072. https://doi.org/10.3390/nu14102072
Roukas, C., Miller, L., Büttner, F., Hamborg, T., Stagg, I., Hart, A., Gordeev, V. S., Lindsay, J. O., Norton, C., & Mihaylova, B. (2024). Impact of Pain, Fatigue and Bowel Incontinence on the Quality of Life of People Living With Inflammatory Bowel Disease: A UK Cross‐sectional Survey. United European Gastroenterology Journal, 13(3), 364-375. https://doi.org/10.1002/ueg2.12668
Seaman, A., & Ferreira, N. (2024). Investigating the Role of Gastrointestinal-Specific Anxiety and Perceived Disability in the Adjustment to Inflammatory Bowel Disease. Gastrointestinal Disorders, 6(1), 191-201. https://doi.org/10.3390/gidisord6010014
Sharara, A. I., Kouzi, Z. E., Zaidan, A., Hachicho, F., Ibrahim, M. A., Jbeily, N., Francis, R., Cooper, S., & Epstein, D. (2026). Navigating Life With Inflammatory Bowel Disease: Challenges, Opportunities, and Support Strategies—A Scoping Review. JCC Plus, 1(3). https://doi.org/10.1002/jcc5.70041
Starčević, A., Filipović, B., Mijač, D., Popović, D., Lukić, S., Glišić, T., Milanović, M., Zívić, R., Popović, V. S., & Aksić, M. (2025). Evaluating Quality of Life in Surgically Treated IBD Patients: A Systematic Review of Physical, Emotional and Social Impacts. Medicina, 61(9), 1662. https://doi.org/10.3390/medicina61091662
Stroie, T., Preda, C. M., Istrătescu, D., Ciora, C. A., Croitoru, A., & Diculescu, M. (2023). Anxiety and Depression in Patients With Inactive Inflammatory Bowel Disease: The Role of Fatigue and Health-Related Quality of Life. Medicine, 102(19), e33713. https://doi.org/10.1097/md.0000000000033713
Swaminathan, A., Day, A. S., Sparrow, M., Peyrin‐Biroulet, L., Siegel, C. A., & Gearry, R. B. (2024). Review Article: Measuring Disease Severity in Inflammatory Bowel Disease – Beyond Treat to Target. Alimentary Pharmacology & Therapeutics, 60(9), 1176-1199. https://doi.org/10.1111/apt.18231
Sweeney, L., Windgassen, S., & Moss‐Morris, R. (2025). Psychological/Behavioral Treatments for Patients With Irritable Bowel Syndrome and Other Gastrointestinal Disorders. 335-355. https://doi.org/10.1037/0000395-015
Thapwong, P., Norton, C., Terry, H., & Czuber‐Dochan, W. (2022). Impact of Inflammatory Bowel Disease on Partners: A Qualitative Study. Gastrointestinal Nursing, 20(3), 40-50. https://doi.org/10.12968/gasn.2022.20.3.40
Thomann, A., Knödler, L.-L., Karthikeyan, S., Atanasova, K., Bernstein, Ç. N., Ebert, M. P., Lis, S., & Reindl, W. (2021). The Interplay of Biopsychosocial Factors and Quality of Life in Inflammatory Bowel Diseases. Journal of clinical gastroenterology, 57(1), 57-65. https://doi.org/10.1097/mcg.0000000000001625
Wang, L., Liang, C., Chen, P., Cao, Y., & Zhang, Y. (2023). Effect of Antidepressants on Psychological Comorbidities, Disease Activity, and Quality of Life in Inflammatory Bowel Disease: A Systematic Review and Meta-Analysis. Therapeutic Advances in Gastroenterology, 16. https://doi.org/10.1177/17562848231155022
Wang, L., Makhdzir, N., & Haron, Z. (2025). The Interplay of Coping Strategies and Quality of Life in Inflammatory Bowel Disease: A Systematic Review. Middle East Journal of Digestive Diseases, 17(1), 60-67. https://doi.org/10.34172/mejdd.2025.409
Wellens, J., Sabino, J., Vanuytsel, T., Tack, J., & Vermeire, S. (2024). Recent Advances in Clinical Practice: Mastering the Challenge—managing IBS Symptoms in IBD. Gut, 74(2), 312-321. https://doi.org/10.1136/gutjnl-2024-333565
Zand, A., Kim, B., Deen, W. K. v., Stokes, Z., Platt, A., O’Hara, S., Khong, H., & Hommes, D. W. (2020). The Effects of Inflammatory Bowel Disease on Caregivers: Significant Burden and Loss of Productivity. BMC Health Services Research, 20(1). https://doi.org/10.1186/s12913-020-05425-w
Zayat, M.-N., Crosby, S., & Kinnucan, J. (2025). Communicating Risks Associated With IBD Therapies to Patients. Frontline Gastroenterology, flgastro-2024-102998. https://doi.org/10.1136/flgastro-2024-102998
Zhang, J., Liu, C., An, P., Chen, M., Wei, Y., Li, J., Zeng, S., Xiang, D., Cai, Y., Li, J., Chen, B., Cui, L., Qian, J., Liu, Z., Jiang, C., Shi, J., Wu, K., & Dong, W. (2024). Psychological Symptoms and Quality of Life in Patients With Inflammatory Bowel Disease in China: A Multicenter Study. United European Gastroenterology Journal, 12(3), 374-389. https://doi.org/10.1002/ueg2.12532
Downloads
Published
Submitted
Revised
Accepted
Issue
Section
License
Copyright (c) 2026 Mette Kristiansen (Author); Natalie Singh; Nikola Petrović (Author)
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.
