Symptom cluster profiles in adolescents with inflammatory bowel disease: Cross‐sectional study using ImproveCareNow data
Year: 2026
Type: article
Study design: Observational Study
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.
DOI: 10.1002/jpn3.70365
Language: English
Topic: Inflammatory Bowel Disease
Subfield: Genetics
Domain: Life Sciences
Open Access status: hybrid
Estimated APC paid: $3,780
Funders: Yale University, Cincinnati Children's Hospital Medical Center, Cleveland Clinic, Nationwide Children's Hospital, University of South Carolina, Seattle Children's Research Institute, Midwest Nursing Research Society, Children's Healthcare of Atlanta, Children's National Hospital, National Institutes of Health, University of North Carolina at Chapel Hill, University of California, San Francisco, National Institute of Nursing Research, Children's Hospital of Pittsburgh
OpenAlex ID: W7126087625