Inflammatory bowel disease (IBD), which includes Crohn’s disease (CD) and ulcerative colitis (UC), affects around 0.5% of the Western population, with prevalence expected to rise to 1% by 2030. These chronic conditions often result in symptoms like pain, diarrhea, weight loss, and fatigue, impacting both the patient’s quality of life (QoL) and that of their caregivers. Effective disease management requires continuous engagement between patients, caregivers, and healthcare providers, although current self-care practices for patients with IBD are underexplored.
The IBD-SELF study aims to investigate the self-care behaviors of patients and the contributions of their caregivers, exploring how these dynamics affect disease outcomes. The study uses a theoretical framework combining the Middle-Range Theory of Self-Care and the Theory of Dyadic Illness Management. It will examine the processes of self-care maintenance, monitoring, and management, and identify predictors of self-care engagement, such as health literacy and disease severity. This research is significant as it highlights the role of both patient and caregiver in disease management, with a focus on self-efficacy and its impact on disease progression and patient outcomes. The study also aims to improve understanding of how self-care can enhance quality of life and reduce disease severity in patients with IBD.
Reference: Napolitano D, Vellone E, Iovino P, et al. Self-care in patients affected by inflammatory bowel disease and caregiver contribution to self-care (IBD-SELF): a protocol for a longitudinal observational study. BMJ Open Gastroenterol. 2024 Aug 29;11(1):e001510. doi: 10.1136/bmjgast-2024-001510. PMID: 39209770.
