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N06 Patient-reported outcomes in daily clinical care of patients with inflammatory bowel diseases

E. Hoefkens*1, L. Pouillon1, Y. Buydens2, P. Bossuyt1

1IBD clinic, Imelda general hospital, Department of gastroenterology, Bonheiden, Belgium, 2Awell Health, Brussel, Belgium


Personalised care of patients with inflammatory bowel disease (IBD) involves measuring outcomes that matter most to the patient. Patient-reported outcomes (PROs) measure various aspects of a patient’s health condition and its impact on general well-being and psychosocial functioning. PRO’s are directly reported by the patient without interpretation of a healthcare professional (HCP).


We developed an electronic PRO assessment tool for the evaluation of patients visiting the outpatient clinic at our referral IBD centre. This secured web-based tool incorporates questionnaires covering several aspects of IBD. Disease activity is measured using the PRO2 (Crohn’s disease) or the Simple Clinical Colitis Activity Index (SCCAI) (ulcerative colitis). In case of non-remission (PRO2≥8/SCCAI≥3), the IBD control questionnaire is requested. IBD-related disability is evaluated with the IBD disk and health-related quality-of-life with the Short Health Scale. Visual analogue scales and open questions are also incorporated. The questionnaires are completed in approximately 5 min on a tablet in the waiting room, before the face-to-face contact between the patient and the HCP takes place. Results are displayed in real-time on a dashboard that can be reviewed by both the patient and the HCP.


The use of a PRO assessment tool has several advantages. (i) It makes the contact between the patient and the HCP more efficient. (ii) Patients feel more engaged in their care since the interaction starts from their perspective. The visualisation on a dashboard further empowers patients by showing the evolution of PRO’s over time, thereby incorporating also several biomarkers (e.g. haemoglobin, C-reactive protein) (Figure 1).

Figure 1. IBD dashboard

(iii) A pre-visit assessment gives patients more time to track down their biggest concerns. (iv) It provides a gigantic amount of systematically obtained objective patient data. Potential drawbacks of the tool are difficulties to deal with the tablet or to correctly understand the questions, and a poor patient motivation. The roles of the IBD nurse are (i) to assist patients when using the tool, especially at its introduction or in patients with advanced age and/or lower educational background; (ii) to help patients to interpret the data; (iii) to optimise patients’ adherence to the tool.


Use of a PRO assessment tool improves personalised IBD patient care and facilitates prospective data collection. The IBD nurse needs to assist patients to get acquainted with the tool.