N09 Disease knowledge and quality of life perception in Inflammatory Bowel Disease: a randomised controlled trial

MartinatoRN PhD, M.(1);Comoretto, R.I.(2);Monaco, E.(1);Ocagli, H.(1);Gregori, D.(1);

(1)University of Padova, Department of Cardiac- Thoracic- Vascular Sciences and Public Health, Padova, Italy;(2)University of Torino, Department of Public Health and Pediatric, Torino, Italy;


Inflammatory bowel diseases (IBD) negatively impact daily activities and perceived quality of life (QoL); good information of IBD patients on disease, diagnostics, and treatments may change this perception, even if the evidence on this topic is lacking; moreover, too much information overwhelms the patient, which inhibits both understanding and recall. No studies are available on the impact produced by different techniques or amounts of information provided. This study aimed at assessing the impact of essential, patient-centred information on the level of knowledge and on the QoL in IBD patients.


Patients with a recent diagnosis of IBD in follow-up at a third-level referral centre were randomly assigned to two different interventions, the “standard of care” information package or the experimental one. The latter is a synthetic, standardised, and structured informative intervention developed with a “less is more” approach in collaboration with local IBD patients' associations. The knowledge level was measured with the Crohn's and Colitis Knowledge score – CCKNOW – (Eaden, Abrams, and Mayberry, 1999), while the perception of QoL with the Short Inflammatory Bowel Disease Quality of life - S-IBDQ – (Irvine, Zhou, and Thompson, 1996). Disease activity was assessed with the Modified Trulove and Witt Severity Index - MTWSI - (Lichtiger et al., 1994) in ulcerative colitis and the Harvey Bradshaw Index – HBI – (Harvey and Bradshaw, 1980) in Crohn's disease.CCKNOW, S-IBDQ and MTWSI or HBI were administered at baseline and two months after the intervention.


68 patients were assessed for study participation and 49 were enrolled. At baseline, the patients’ level of knowledge was very low, with correct answers ranging from 2 to 50% in different domains, positively correlated with the patient's instruction level (ρ = 0.40; p<0.01) and negatively with age (ρ = -0.30; p<0.05). QoL, disease activity, gender, disease duration, type of IBD, number of outpatient visits, and hospital admissions were not related to the level of knowledge. Two months after the administration of the educational intervention, patients in the experimental group showed a higher level of knowledge than the control group (p<0.01) and better perception of QoL (p<0.01), while disease activity remained stable in both groups.


Increasing patients’ knowledge improves QoL and an educational intervention with less information performed shortly after diagnosis significantly improves the patient's knowledge and QoL, regardless of disease activity.