Abstract
Background and Aims: The management of chronic inflammatory bowel diseases in youth is challenging. We aimed to determine health literacy (HL), quality of life (QoL) and clinical outcomes in young adults from the BELgian CROhn's disease registry (BELCRO) in comparison to type 1 diabetes mellitus (DM) as a control.Methods: In this prospective and observational study, young adults with Crohn's disease (CD) diagnosed < 18 years and with > 5 years disease duration and a comparable group of patients with DM completed validated HL, QoL and work productivity and activity impairment questionnaires (HLS-EU-Q16, EQ-5D-5L and WPAI). HL was scored as sufficient (13–16), problematic (9–12) or inadequate (0–8). QoL was dichotomized into “no problems” (EQ-5D level 1) or “problems” (EQ-5D levels 2 to 5). Non-parametric (Mann-Whitney U) analyses and Spearman correlations were performed.Results: A total of 52 CD (median [IQR] age of 25.0 [23.8-27.0], 64% male) and 50 DM (age 20.0 [19.0-22.0], 50% male) patients were included. HL was 14.0 [11.0-16.0] for CD and 14.0 [11.3-14.8] for DM (p = 0.6) with similar proportions of sufficient (60 vs. 68%, p = 0.4), problematic (34 vs. 26%, p = 0.3) and inadequate HL (both 6%, p = 1). Although QoL was comparable for CD and DM (77.0 [68.8-82.0] vs. 75.0 [65.0-80.0] %, p =0.4), CD had a trend for higher pain/discomfort (50 vs. 32%, p = 0.06). HL and QoL correlated in CD (r = 0.6, p < 0.001) and DM patients (r = 0.6, p < 0.001). Fewer CD patients with recent hospitalization/surgery had sufficient HL (31 vs. 69%, p = 0.01) and had lower QoL (70.0 [60.0-77.0] vs. 80.0 [70.0-85.0], p = 0.04) compared to those without.Conclusions: Selected young Belgian adults suffering from CD for >5 years have similar and sufficient HL compared to DM patients. However, CD patients requiring hospitalization/surgery have lower HL, which indicates the need for targeted educational programs.
Highlights
The care for patients with chronic inflammatory diseases is one of the major challenges in today’s society
The study protocol of this prospective and observational study was approved by the Institutional Review Board (IRB) ZNA Middelheim (B00920083829), after approval by the board of the Belgian Society for Pediatric Gastroenterology, Hepatology and Nutrition (BESPGHAN) and the Scientific Committee of the Belgian Inflammatory Bowel Disease Research and Development group (BIRD)
Of the remaining 178 young adult Crohn’s disease (CD) patients with 5 years FU, 84 patients could not be reached as the treating physician did not respond to the invitation to participate in this FU study
Summary
The care for patients with chronic inflammatory diseases is one of the major challenges in today’s society. Crohn’s disease (CD) is an inflammatory bowel disease (IBD) which has important repercussions on daily life [1,2,3]. Huang et al [4] state that “to prepare for the transition from pediatric to adult-oriented health care, adolescents must develop the ability to obtain, process and understand basic health information, make appropriate health decisions and interact effectively with health care professionals”. This ability is called Health Literacy (HL) [4]. The management of chronic inflammatory bowel diseases in youth is challenging. We aimed to determine health literacy (HL), quality of life (QoL) and clinical outcomes in young adults from the BELgian CROhn’s disease registry (BELCRO) in comparison to type 1 diabetes mellitus (DM) as a control
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