Sleep disturbance, pain, anxiety, depression, and fatigue are prevalent in adolescents and young adults with inflammatory bowel disease (IBD). These symptoms often present in co-occurring sets, known as symptom clusters. We aimed to identify distinct symptom clusters and factors associated with symptom profiles in adolescents with IBD.
Why was this study done?
Often, symptoms are not experienced in isolation but can overlap and co-occur in relatively stable groups that are known as “symptom clusters.” Symptom cluster research is important because targeting multiple symptoms at once can be more effective than targeting individual symptoms. Understanding how adolescents with inflammatory bowel disease (IBD) experience symptom clusters will help us identify overlapping symptoms and lead to the creation of tools and therapies that support quality of life.
ImproveCareNow (ICN) played a pivotal role in facilitating this research study. With the support of ICN, we were able to share the study on social media and in ICN newsletters, as well as promote the study at ICN clinics. Members of the Parent/Family Advisory Council (fka Parent Working Group) and the Patient Advisory Council also took part in stakeholder group meetings. These meetings were crucial in helping guide the design and development of the study. Finally, we were able to combine online survey data with data from the ICN data registry, which strengthened our study findings.
Study overview
In this study, we aimed to examine symptom clusters of sleep disturbance, pain, anxiety, depression, and fatigue in adolescents with IBD. We also aimed to explore clinical, demographic, and psychological factors related to symptom clusters.
From October 2022 to December 2023, we recruited 105 participants ages 13-17 years old with Crohn’s disease or ulcerative colitis who were seen at ICN centers across the United States. Participants completed an online survey that asked questions about their background, symptoms, confidence in managing their IBD (also known as IBD self-efficacy), and health behaviors such as IBD self-management, sleep hygiene behaviors, and medication adherence. We also collected data from the ICN data registry about participants’ IBD, including their disease activity (physician global assessment of disease activity) and current IBD treatment (biologic medications, corticosteroid use).
Study limitations
Our study was limited in a few important ways. First, our sample may not be representative of the overall adolescent population with IBD. Most of our participants had Crohn’s disease (77% compared to 23% with ulcerative colitis), and were in remission or had mild disease activity (64% and 10% of participants, respectively). We also excluded participants who could not independently complete an online English language survey. Second, most of the factors we examined were subjective data rather than objective, observable data. We relied on self-report of sleep problems instead of an objective method of sleep assessment. We also used physician global assessment to examine disease activity, instead of endoscopic or histologic findings. If we had collected objective data, our findings could be different.
What does this mean for patients, families, and clinicians?
We found three distinct symptom cluster groups that our participants belonged to: “High Symptom Burden (27% of participants),” “Low Symptom Burden (62% of participants)” and “Impaired Energy (11% of participants).” Participants in the “High Symptom Burden” group reported all five symptoms of sleep disturbance, pain, anxiety, depression, and fatigue. Participants in the “Low Symptom Burden” group reported none of these symptoms. Participants in the “Impaired Energy” group reported sleep disturbance and fatigue. Older adolescents, those with multiple chronic conditions besides IBD, and those with lower IBD self-efficacy were more likely to have belong to the “High Symptom Burden” and “Impaired Energy” groups compared to the “Low Symptom Burden” group.
Our findings highlight an unmet need for adolescents with IBD. Even though most of our participants had low levels of disease activity, we still found several symptom clusters that impacted quality of life. Specifically, sleep disturbance and fatigue were major features of the two main symptom clusters, indicating a need for tools and therapies to help adolescents detect and manage these symptoms.
Study authors
Caeli Malloy, Kurt Kroenke, Patrick O Monahan, Susan M Rawl, Steven J Steiner, Wendy R Trueblood Miller; ImproveCareNow Pediatric IBD Learning Health System
Study stats
A poster was presented at Digestive Disease Week 2025. The study was published in January 2026. You can locate it on our website and online in the Journal of Pediatric Gastroenterology and Nutrition (JPGN)
- Study citation: Malloy C, Kroenke K, Monahan PO, Rawl SM, Steiner SJ, Miller WRT; ImproveCareNow Pediatric IBD Learning Health System. Symptom cluster profiles in adolescents with inflammatory bowel disease: Cross-sectional study using ImproveCareNow data. J Pediatr Gastroenterol Nutr. 2026 Apr;82(4):1029-1039. doi: 10.1002/jpn3.70365. Epub 2026 Jan 29. PMID: 41609007; PMCID: PMC13050818.
- Study sharing: © 2026 The Author(s). Journal of Pediatric Gastroenterology and Nutrition published by Wiley Periodicals LLC on behalf of European Society for Pediatric Gastroenterology, Hepatology, and Nutrition and North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition.
🔎 This ICN Research Explained was prepared by: Caeli Malloy, PhD, RN, T32 Postdoctoral Scholar, University of Washington School of Nursing and Dr. David Wohl, Parent, ImproveCareNow Research Committee
We believe that in order to truly outsmart IBD, the questions we ask and the answers we find must be generated by and be useful to the people whose lives they will impact – patients and their families. ImproveCareNow (ICN) research is prioritized based on what matters most to patients and parents, and we are committed to sharing our results so everyone can understand and take advantage of what’s been learned. The ICN Research Committee has teamed up with patients and parents/caregivers to create and share accessible summaries of completed research called ICN Research Explained
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