Quality of life reported by Italian children with IBD and their parents: Preliminary results of a multicenter SIGENP study

Background and aims: Quality of life (QoL) is a well-established target of IBD care and is reliably measurable in children by the IMPACT III questionnaire. Patient’s and disease characteristics can potentially influence QoL. We aimed to evaluate: 1. concordance between parents and child ratings of QoL, 2. patients and disease contributors to QoL. Methods: The IMPACT-III (IT) questionnaire was used to measure QoL in children with IBD (age 8-18 years) and one of their parents, prospectively enrolled in 7 centers in Italy. Scores on the IMPACT-III were linearly transformed to a range of 0-100. Correlation between parent and child QoL scores were evaluated. Associations between QoL and patient’s characteristics and disease features were calculated. Multiple regression analysis was used to determine significant predictors of QoL. Results: A total of 192 children with IBD (median age 15 years IQ range 12.15-16.63, 54.7 % boys, 54.1% CD, 44.3% UC, median duration of disease 10.8 years, IQ 7.86-13.32) and one of their parents (78.7 % mothers) have been enrolled so far. 73% were in clinical remission, 31.7% had at least one clinical relapse in the last year. Median QOL score was 67.8 (IQ range 42.5-81), a significant difference was found between the scores in each domain (p= 0.0016), with the lowest score found in the “body image domain” (58.3 IQ range: 41.6-75) and the highest in the “bowel symptoms domain” (78.57, IQ range 39.3-89.3). Parent-proxy and patient ratings were similar on total IMPACT III and its related domains (p=ns) and no difference was detected between mothers and fathers’ scores. QoL (total score and related domains) was not found to be related to age, sex and disease type. QoL scores were significantly higher in IBD children from north Italy compared to children from south and central Italy (p < 0.0001 in all the domains). The overall QoL score was positively correlated to disease duration (r= 0.16, p= 0.024). A significant lower QoL was found in patients with moderate/severe activity compared to patients in remission or mild activity, defined both by PGA (p=0.007) or by disease’s activity scores PCDAI/PUCAI (p=0.024). A significant inverse correlation was found between fecal calprotectin levels and total QoL score (r= -0.32, p=0.0014). Current use of biologics was correlated to a lower total QOL score (p < 0.0001). Results of the multiple regression analysis (variables included: disease activity, length of disease, fecal calprotectin levels, use of biologics, geographical provenience) showed that the only significant independent predictor of QoL was disease’s activity (B= -22.53, p= 0.001) Conclusions: parents correctly report children’s QoL in our cohort. QoL was found to be higher in children from Northern Italy and was positively correlated to disease duration and negatively to disease activity, level of fecal inflammation and use of biologics. Disease’s activity was the only independent predictor at the multiple regression analysis.