Benefits of self-management interventions for young patients with IBD have been identified, but further research is needed

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March 19, 2019
Posted by: Sarah Goto, MPH


Benefits of self-management interventions for young patients with IBD have been identified, but further research is needed

Acknowledgement: This article is a summary of “A Systematic Review of Self-Management Interventions for Children and Adolescents With Inflammatory Bowel Disease” recently published in Inflammatory Bowel Diseases by Lien Tran, MPH, and Kathleen Mulligan, PhD. The article was written by Sarah Goto, MPH, Pediatric Education Manager at the Crohn’s & Colitis Foundation.

Day-to-day management of a chronic disease is complex and can be especially challenging for young patients. Self-management, or the role that the patient plays in the management of his or her disease, includes three main tasks: medical management, making lifestyle changes to adapt to changing health needs, and dealing with the emotional impact of having a chronic disease. For young patients with inflammatory bowel diseases (IBD), tasks may include attending regular medical appointments, taking medication, nutritional therapy, diet changes, and managing symptoms. Young patients also must manage school and social relationships, and cope with stress and other emotions that may arise from having IBD. Difficulty with self-management can result in treatment nonadherence and a decline in psychological health. There is evidence that participation in IBD self-management among children and adolescents can improve treatment adherence and disease outcomes.

Researchers from the School of Health Sciences at City, University of London, UK, conducted a literature review to evaluate the effectiveness of self-management interventions for children and adolescents with IBD. The review identified controlled trials of interventions aiming to improve IBD self-management in patients up to nineteen years old. Trials that included parents and caregivers of children and adolescents with IBD were also eligible. Nine trials were determined to be eligible for inclusion; five interventions based on Cognitive Behavioral Therapy (CBT) aimed to improve psychological health, three interventions used skills training to improve adherence to medication, and one focused on behavioral strategies to increase calcium intake.

There were 521 total participants in the nine trials. A majority of the trials were small; seven recruited fewer than 50 participants. The mean age range was 8.5 to 15 years and more than 68 percent of participants were Caucasian; most trials had an even sex distribution of participants. Trials included patients with Crohn’s disease and ulcerative colitis. Six studies reported severity, in which between 30 percent and 100 percent of participants had active disease.

Trial results found that self-management interventions had some benefits in disease activity, adherence, and psychological health, but findings were not consistent. Small sample size presented a barrier to conclusive results. In two interventions that measured disease activity as an outcome, a large trial found that self-management intervention reduced disease activity, but a smaller trial did not. The results of three trials that assessed medication adherence were also inconsistent. One trial found a beneficial effect on adherence to one of two assessed IBD medications, and another reported a benefit in adherence when assessed using self-report but not with other measures such as pill count. A third trial reported beneficial effects in a subgroup of participants, but no overall effect. A study that assessed health-related quality of life reported improvements after self-management intervention, but not in all the subscales measured. Two other quality of life studies reported within-group, but not between-group, benefits.

In conclusion, the identification of patient education interventions to improve self-management for children and adolescents with IBD is a top research priority. Some benefits of self-management interventions have been identified, but there is a lack of large, well-designed trials to support findings. Self-management in children and adolescents with IBD is a new and developing area. Clinical consensus is needed to determine which self-management activities should be recommended to patients and targeted in interventions.

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