N13 Quality of life among patients with IBD on biological treatment: does it matter if they are in remission?

Abstract

Background: When asked, patients with IBD on biological treatment often have worries and a reduced quality of life (QoL), even with disease remission. Despite low clinical scores (SCCAI and HBI) some patients scores low QoL on the Short Health Scale (SHS), especially worries.1 This study aimed to investigate the possible reasons of this and aspects related to low QoL in patients on biological treatment in general. Methods: IBD outpatients on biological treatment from or University hospital were consecutively invited to answer questions about QoL and disease activity. QoL were measured on the SHS and disease activity was scored on the SCCAI or HBI scale. Both patients in disease remission and patients with disease activity were included. Patients with a SHS subscore > 5 were asked to measure disability on the IBD Disk (10 items; VAS, 0-10 cm).2 Subsequently, the patients were asked to add comments on the 3 most burdensome topics from the IBD Disk score. QoL-data were analysed using descriptive statistics. The comments were analysed inspired by Malterud's principles of systematic text condensation.3 Results: 75 patients were included in a period of 3 month: 61% Crohn's disease (CD); 39% ulcerative colitis (UC); 67% women; 37% disease in remission. Despite lower QoL for patients with disease activity, we found no statistically differencies in disabiliy except from 'interpersonal interaction'. Overall, patients with CD scores significant more disability on body image and sexual function (p < 0.04) on the IBD Disk. Women had significant lower QoL than men in all scores and more emotionally and body image disability on the IBD Disk (p < 0.01). On the IBD disk, the mean score for patients in remission was highest on the topics energy (7.1), emotions (5.4), and joint pain (5.2). Patients with disease activity vs. remission scored higher on all topics on the IBD disk, except joint pain (4.2). The most commented items on the IBD disk, was energy (39), emotions (36), abdominal pain (29) and sleep (28). Marked themes derived from the text condensations included 'interrupted sleep due to pain and urge', 'constant exhaustion', 'abdominal pain related to food', 'defaecation and bloating', and 'concern about the future and medical treatment'. Conclusions: Patients with disease activity vs. remission revealed lower QoL, but showed no differencies in disability, except from 'interpersonal interaction'. Patients with disease in remission vs. activity scored higher on joint pain. Patients commented mostly on the topics energy and emotions. By text condensation of the comments by the patients, we managed to get a deeper understanding of aspects related to the reduced QoL.