Pediatric patients with active and quiescent inflammatory bowel disease (IBD) have known fatigue, but there is limited understanding of how fatigue is clinically assessed. This study explored perspectives of pediatric IBD patients and healthcare professionals (HCPs) regarding fatigue assessments.
Why was this study done?
We know from previous research that pediatric patients with inflammatory bowel disease (IBD) experience more fatigue (feeling like you have ‘low battery power’) compared with same-aged peers who do not have IBD. Interestingly, this has been shown to happen for both pediatric IBD patients who are in remission and those who are in flares; in other words, fatigue can impact many patients with IBD even when they are feeling well and certainly when they are not feeling well. While we know that fatigue is a common concern in pediatric IBD, there was little understanding on how fatigue is discussed during clinic visits. Knowing how fatigue is asked about (or not asked about) in routine clinic visits is important to understand what gaps in care there may be so care can be improved in the future.
Study overview
This study was designed by a multidisciplinary team including two patient advocates from the Patient Advisory Council, physicians, GI psychologists, and a sleep psychologist. This study involved two surveys: 1) a one-time survey for pediatric IBD patients cared for at an ImproveCareNow center who were between 8 and17 years old, and 2) a one-time survey for healthcare professionals (including doctors, psychologists, nurses, dietitians) who provided IBD care at an ImproveCareNow center.
Forty-three pediatric patients with IBD completed the patient survey. Their average age was 14.2 years. Of those surveyed, 54% female, 93% non-Hispanic, and 81% White, with 67% living with Crohn’s Disease. More than half (56%) of patients had clinically elevated fatigue scores. Most patients (72%) said they wanted their IBD healthcare professional to ask about fatigue during care. However, 67% of patients sharing that their IBD healthcare professional never or not often asks about fatigue, and 5% said fatigue was asked about during clinic visits.
Sixty-six healthcare professionals completed the survey. Of those, 70% physicians or advanced nurse practitioners, 61% female, 92% non-Hispanic, and 79% White. These healthcare professionals estimated that 67% of patients with IBD report fatigue during clinic visits, and 61% of healthcare professionals stated that they routinely ask about fatigue during care. Most (73%) reported feeling comfortable asking about fatigue and 68% of healthcare professionals stated that they would be interested in using a validated fatigue measure to use in clinical care.
Study limitations
This study had a few limitations to keep in mind when considering the results. Both the patient and healthcare professional surveys asked individuals to share their perspectives through self-report. The patient and healthcare professional surveys were not matched. The study participants in both patient and healthcare professional groups were largely non-Hispanic and White, and more ethnic and racial diversity is important for future studies on fatigue and IBD.
What does this mean for patients, families, and clinicians?
Fatigue is an important clinical concern in pediatric IBD that can impact patients in remission and during flares. Based on the study findings, both patients and healthcare professionals see fatigue as a common and challenging part of pediatric IBD. Interestingly, there was a mismatch between how patients and healthcare professionals remembered fatigue being discussed: 67% of patients said their IBD healthcare professionals never or not often asked about fatigue while 61% of IBD healthcare professionals reported asking about fatigue routinely during clinic visits. This may suggest that patients and healthcare professionals are not always communicating about fatigue in the same way. For example, a doctor may ask about fatigue when a patient may not recognize that word and may better understand a question about feeling tired or low on energy. This points to ongoing gaps in how fatigue is discussed in care and the need for a more consistent approach to asking about fatigue across ImproveCareNow centers.
Study authors
Jennie G David, Dana Kamara, Nour Al-Timimi, Valerie McLaughlin Crabtree, Sabina Ali; ImproveCareNow Learning Health System
Study stats
This study was published in June 2025. You can locate it on our website and online in JPGN Reports
- Study citation: David, J. G., Kamara, D., Al-Timimi, N., Crabtree, V. M., Ali, S., & ImproveCareNow Learning Health System (2025). Patient and healthcare professional perspectives on fatigue assessment in pediatric inflammatory bowel disease. JPGN reports, 6(4), 455–460. https://doi.org/10.1002/jpr3.70068
- Study sharing: © 2025 The Author(s). JPGN Reports published by Wiley Periodicals LLC on behalf of The European Society for Pediatric Gastroenterology, Hepatology, and Nutrition and the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition.
🔎 This ICN Research Explained was prepared by: Jennie David-Rodgers, PhD, Pediatric Psychologist, Dartmouth Health Children’s and Lisa Pitch, 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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