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Symptom cluster profiles in adolescents with inflammatory bowel disease: Cross-sectional study using ImproveCareNow data
Journal article   Open access   Peer reviewed

Symptom cluster profiles in adolescents with inflammatory bowel disease: Cross-sectional study using ImproveCareNow data

Caeli Malloy, Kurt Kroenke, Patrick O. Monahan, Susan M. Rawl, Steven J. Steiner, Wendy R.Trueblood Miller and ImproveCareNow Pediatric IBD Learning Health System
Journal of pediatric gastroenterology and nutrition, Vol.82(4), pp.1029-1039
04/2026
DOI: 10.1002/jpn3.70365
PMID: 41609007
url
https://doi.org/10.1002/jpn3.70365View
Published (Version of record) Open Access

Abstract

Objectives 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. Methods We recruited 105 adolescents with IBD seen at ImproveCareNow clinics. Data were collected from the ImproveCareNow clinical data registry (years since diagnosis, medications, and physician global assessment of disease activity) and an online survey (demographics, diagnosis, comorbidities, symptoms, self-efficacy, self-management, medication adherence, and sleep hygiene). Latent class analysis was used to classify adolescents into subgroups with distinct symptom profiles. Results Adolescents were 51.4% female, 83.8% white, a mean age of 14.9 years; 77.1% had Crohn's disease and 62.9% were on biologic therapy. Mean comorbidities were 0.6 and 70.5% had mild or quiescent disease activity. Three symptom profiles emerged: (1) Low Symptom Burden, characterized by a low probability of endorsing any symptoms; (2) High Symptom Burden, characterized by a high probability of endorsing sleep disturbance, pain, anxiety, depression, fatigue; and (3) Impaired Energy, characterized by a high probability of endorsing sleep disturbance and fatigue. Older age, more comorbidities, and lower IBD self-efficacy were associated with the High Symptom Burden profile. Older age and lower IBD self-efficacy were associated with the Impaired Energy profile. Conclusions Distinct symptom profiles highlight the unique symptom management needs of adolescents with IBD. Future research should explore biopsychosocial contributors and longitudinal trajectories of symptoms.
 Crohn's disease self-management ulcerative colitis

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