JPGN Reports · 12 authors, 9 centres
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This study used the IBD-KID2 tool to measure disease knowledge in 130 children with IBD and their families across three English-speaking countries. Parents scored significantly higher than children, and siblings had the lowest knowledge, with scores correlating with age and parental education. The findings confirm the tool's generalizability and highlight the need for targeted education, especially for siblings.
**Background:** When a child is diagnosed with inflammatory bowel disease (IBD), the entire family must adapt to the disease's burden. Disease-specific knowledge is a modifiable factor that can improve treatment adherence and self-management in children, and psychosocial outcomes in siblings. While previous studies have assessed knowledge in children with IBD and their parents, siblings and the family unit as a whole have received little attention. The IBD-KID2 tool was previously validated in a single center, but its generalizability to other settings was unknown. This study aimed to use IBD-KID2 to measure knowledge levels in children with IBD and their family members across multiple English-speaking countries, and to establish the tool's external validity.
**Methods:** This multicenter collaboration included tertiary care hospitals in New Zealand (Christchurch, Auckland), Australia (Sydney, Brisbane, Melbourne), and Canada (Nova Scotia, Vancouver). Children with IBD aged 8 years and older, at least one parent, and any siblings aged 8+ were recruited from outpatient clinics. Participants completed the IBD-KID2 survey electronically via a HIPAA-compliant platform. The survey consists of 15 questions (9 true/false, 6 multiple choice) with a 'don't know' option, scored 1 per correct answer (max 15). Domains include general IBD, treatment, lifestyle, and nutrition. Demographic data (age, gender, diagnosis, time since diagnosis, parental education, support group membership) were collected. Children with IBD were asked to complete the survey twice (2 weeks apart) for test-retest reliability. Mean scores were compared across groups using ANOVA with Tukey's post-hoc test. Associations with demographic variables were assessed using t-tests, ANOVA, or linear regression. Correlations between family member scores were evaluated with Pearson's coefficient. Generalizability across countries was examined by comparing demographics and scores using Chi-square, ANOVA, and univariate analysis.
**Key Results:** A total of 130 children with IBD participated (mean age 13.9 years, SD 2.4; 53% male; 64% Crohn's disease, 32% ulcerative colitis, 4% IBD unclassified). Mothers participated for 118 (91%) children, fathers for 55 (42%), and siblings for 37 (28%). Mean IBD-KID2 scores (max 15) were: mothers 11.8 (SD 2.4), fathers 11.2 (SD 2.3), children with IBD 9.1 (SD 2.9), siblings 7.5 (SD 3.8). Post-hoc analysis showed children with IBD and siblings scored significantly lower than parents (P ≤ 0.005), and children with IBD scored higher than siblings (P = 0.009), with no difference between mothers and fathers (P = 0.561). Scores of children with IBD were positively correlated with age (R = 0.30, P = 0.001) and age at diagnosis (R = 0.19, P = 0.04). Sibling scores correlated with age (R = 0.47, P = 0.002). Mother's scores were associated with their education level (F = 5.6, P = 0.001), and father's scores with their education level (F = 2.84, P = 0.04). Children's scores were associated with father's education level (F = 3.67, P = 0.02). Mothers and fathers with high school education scored significantly lower than those with postsecondary education (Mothers: MD -1.9, P = 0.01; Fathers: MD -1.7, P ≤ 0.005). Children's scores were weakly correlated with mothers (R = 0.317, P ≤ 0.005) and siblings (R = 0.345, P = 0.03). Test-retest reliability was established in 74 children (57%): mean scores were not significantly different (MD 0.3, P = 0.912) with an ICC of 0.851 (P ≤ 0.005). No significant differences in scores were found between countries for any participant group (children P = 0.423, mothers P = 0.427, fathers P = 0.063, siblings P = 0.242). Knowledge patterns showed that mothers and fathers answered all 15 items correctly by at least 50% of the group, children with IBD answered 9/15, and siblings 7/15.
**Clinical Implications:** This study confirms that IBD-KID2 is a valid, reliable, and generalizable tool for assessing IBD knowledge in children and their families across English-speaking settings. The hierarchy of knowledge (mothers > fathers > children with IBD > siblings) mirrors previous findings and highlights siblings as a particularly vulnerable group with the lowest knowledge. The weak correlation between children's and mothers' scores suggests that maternal knowledge may influence child knowledge, but sibling knowledge is not correlated with parents, indicating siblings may rely on indirect learning or independent information seeking. The association of knowledge with age and parental education suggests that educational interventions should be tailored to younger children and families with lower education levels. The lack of association with support group membership implies that disease-specific education should be provided by clinical teams rather than assumed from support groups. These findings support the use of IBD-KID2 in clinical practice to identify knowledge gaps and target education, particularly for siblings, to improve psychosocial outcomes.