Health Related Quality of Life improves in children and adolescent Inflammatory Bowel Disease (IBD) patients attending IBD camp

Hurd, Linda B.; Shepanski, Melissa A.; Markowitz, Jonathan E.; Culton, Keri; Check, Morgan; Peck, Susan N.; York, Amy; Baldassano, Robert N.

doi:10.1016/s0016-5085(03)81007-7

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“…Identifying opportunities for delivering formal education may be challenging for parents, therefore, utilizing situations where their children are already involved may be beneficial and logistically appealing. Residential camps for children with chronic conditions, including IBD, have been run for many years (7) and have shown a number of benefits for children such as confidence, acceptance, perspective about disease trajectories, and peer connections (8)(9)(10). They also consistently demonstrate positive and sustained improvements to knowledge, self-management skills and health related quality of life for children with IBD (8,(11)(12)(13).…”

Section: Introductionmentioning

confidence: 99%

Assessment of Knowledge Levels Following an Education Program for Parents of Children With Inflammatory Bowel Disease

2020

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Children with inflammatory bowel disease (IBD) and their parents have increasing roles in disease management and require sufficient, appropriate information for communication with their clinical team. Formal education is effective at improving disease knowledge, disease outcomes, and mental health, yet few interventions have been targeted for parents of children with IBD. A two day parent education program was held at the annual residential camp for children with IBD in New Zealand with knowledge levels tested pre and post intervention using a validated assessment tool: IBD-KID2. Thirty parents consented, 25 completed the study, 70% were female and 83% had a child with Crohn's disease. The pre-intervention mean score (maximum fifteen) was 10.6 (SD 2.9), with no associations with independent variables. Knowledge levels increased significantly following the education program to a mean 12.6 (SD 2.0) (p < 0.005). Disease specific knowledge may improve outcomes and should, therefore, be reinforced during clinic encounters, and regarded as an ongoing endeavor.

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