Abstract

BACKGROUND

Sleep disturbance, pain, anxiety, depression, and fatigue are highly prevalent, co-occurring, and burdensome symptoms in adults with IBD. However, it is not known how symptoms may co-occur or cluster in adolescents and young adults (AYAs) with IBD.

AIMS

1) To explore symptom clusters in AYAs with IBD and 2) evaluate associations between symptom profiles and demographic, clinical, and self-management factors.

METHODS

105 AYAs with IBD were recruited through social media, clinic flyers, and mailings. Data were collected from the ImproveCareNow clinical data registry and an online REDCap survey. Years since diagnosis, current IBD treatment, surgical status, and physician global assessment of disease activity were extracted from the data registry. Demographics, IBD diagnosis, and comorbidities were assessed by self-report. Pediatric Patient-Reported Outcomes Measurement Information System (PROMIS) self-report forms assessed sleep-related impairment, pain, depression, fatigue, and global health. IBD self-efficacy, self-management, medication adherence, and sleep hygiene were assessed using validated questionnaires.

Symptoms were dichotomized as present/absent using established PROMIS cutoffs. Using Mplus 8, latent class analysis was performed to group AYAs into symptom profile classes. Models with 1 to 5 classes were compared using information criteria and likelihood ratio tests. Based on parsimony and interpretability, a 3-class solution was chosen. Then, Vermunt’s 3-step method was used to explore predictors of symptom profile membership.

RESULTS

AYAs were 51.9% female, 84.6% white, a mean age of 14.93 (13-17) years; 77.1% had Crohn’s disease and 62.8% were on biologic therapy. AYAs had been diagnosed for a mean of 3.58 (SD=3.21) years, had a mean of 0.59 (SD=1.06; 0-7) comorbidities, and mild disease activity (M=1.31; SD=0.67).

The “Low Symptom Burden” profile (62% of sample) was characterized by a low probability of endorsing any symptoms. The “High Symptom Burden” profile (27% of sample) was characterized by a high probability of endorsing sleep impairment, pain, anxiety, depression, and fatigue. The “Low Energy” profile (11% of sample) was characterized by a high probability of endorsing sleep impairment and fatigue.

Female sex (OR=4.35), more comorbidities (OR=2.55), worse sleep hygiene (OR=2.56), and lower self-efficacy (OR=1.23) were significant predictors of the High Symptom Burden profile compared to the Low Symptom Burden profile. Reporting more comorbidities (OR=9.22) was a significant predictor of the High Symptom Burden profile compared to the Low Energy profile.

CONCLUSION

AYAs with IBD experience numerous, co-occurring, burdensome symptoms. Future research should explore biopsychosocial contributors and longitudinal symptom trajectories to inform development of tailored symptom management interventions for AYAs with IBD.

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