Abstract Background IBD self-management behaviors can be classified into three components: monitoring, adaptation, and maintenance. Aims Our primary objective was to understand variation in IBD self-management behaviors. Our secondary objective was to examine the relationship between disease burden, self-efficacy, and these IBD self-management behaviors. Methods We conducted a prospective survey study of patients with IBD using the IBD self-care questionnaire, treatment self-regulation questionnaire, IBD self-efficacy scale, understanding IBD questionnaires, and ulcerative colitis (UC)/Crohn’s disease patient-reported outcome measures. We examined the relationship between IBD monitoring, adaptation, maintenance behaviors, and both IBD self-efficacy and current disease burden using multivariable ordinal logistic regression. Results We enrolled 87 participants (mean age, 55.2 sd = 17.1 years, 51.7% female, 47.1% with UC) who completed survey questions. Overall participation in IBD monitoring, adaptation, and maintenance behaviors was common. In a multivariable analysis, higher self-efficacy was associated with more frequent monitoring of non-inflammatory symptoms after adjusting for disease burden, age, sex and IBD type (odds ratioOR = 1.013, p = 0.006). Separately, higher disease burden was associated with more frequent adaptation (including avoiding sex, OR = 1.089, p < 0.001; avoiding activities, OR = 1.079, p < 0.001; planning around bathrooms, OR = 1.090, p < 0.001; planning around IBD, OR = 1.127, p < 0.001). Conclusion Study findings highlight a complex relationship between IBD self-management behaviors, self-efficacy, and disease burden. Self-management support strategies that adapt to the needs of patients at times of high disease burden may offer unique benefits. Further work is needed to explore how best to adapt these strategies into effective interventions.
Anders-Rumsey et al. (Tue,) studied this question.