Development and validation of a self-management skills assessment tool for children with inflammatory bowel disease: The inflammatory bowel disease-skills tasks and abilities record (IBD-STAR)

Abstract

Objectives: For children with inflammatory bowel disease (IBD), the development of self-management skills has the potential to improve disease outcomes. No assessment tools are aimed at measuring self-management skills in this population.Atoolwas developed called the IBD-Skills Tasks andAbilities Record (IBD-STAR) which measures children's allocation of responsibility for specific skills. IBD-STAR contains 18 items, scored whether completed independently (score 2), with help (score 1) or not at all (score 0). Methods: Children with IBD completed IBD-STAR; one parent and a gastroenterologist completed a series of visual analogue scales that corresponded with each IBD-STAR section. Children's IBD-STAR scores were examined against independent variables and compared with the parent and clinician visual analogue scale scores. Reliability was calculated using Cronbach's alpha. Results: Twenty-five Cronbach's alpha with IBD participated, mean age 14 years (standard deviation (SD) 1.7), 14 (56%) were boys, and 21 (84%) had Crohn's disease.Themean IBD-STARscorewas 27.1 (SD5.7), equivalent to a score of 75%. Age was the only independent variable significantly associated with scores (P=0.017). Parents consistently underestimated their children in all sections, but clinician assessments were more closely aligned. Reliability for IBD-STAR was good with an overall Cronbach's alpha of 0.84. Conclusion: IBD-STAR reports the allocation of responsibility for selfmanagement skills with good agreement between children and clinician, and with comprehensible differences with their parents. Such a tool may be used to identify children with IBD in need of support or to measure the efficacy of targeted interventions