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Using e-health tools and PROMs to support self-management in patients with inflammatory bowel disease

08 April 2021
Volume 30 · Issue 7



The use of digital health or e-health is growing. The potential positive impact on IBD care from supported self-management using these tools emerged from a literature review carried out in preparation for a service improvement project. A patient-reported outcomes measure (PROM) with validation across IBD sub-types was already available for use. This internationally recognised tool has potential for use with existing or new e-health systems.


In order to test the concept of using PROMs to support practice and follow up a small-scale pilot study was designed. The aim of the study was to understand if empowering patients to undertake supported self-management could lead in turn to improved flow through outpatient services.


An audit was carried out of PROMs looking at quality of life (QoL) as well as disease activity using an electronic platform in real time at the point of patient contact. The disease activity indices used were the Harvey Bradshaw Index and the Simple Clinical Colitis Activity Index, due to the author's familiarity with these tools.


Of the 15 participants, 10 reported themselves as ‘well’ or ‘well with questions’ all participants reported an acceptance of supported remote self-management using e-health.


This evaluation led to PROMs being captured on a tablet in the outpatient setting in the pre-pandemic period. Allowing patients to use the PROM as a tool in the outpatient setting has led to longitudinal data being added to the e-health system for each individual. Well patients could be managed remotely, freeing capacity in outpatient clinics.

Digital health or e-health tools are becoming more common in healthcare generally and in the care of patients with inflammatory bowel disease (IBD) (Avery, 2020). Evidence for the potential positive impact from supported self-management using these tools emerged from a literature review carried out in preparation for a service improvement project (SIP) (Avery, 2019) as part of the work for the author's Master of Science in advanced clinical practice. It was concluded in this review that this integrated approach could provide an alternative management plan for patients who could be offered follow up and support remotely.

In 2015 a patient management system was implemented in the IBD department at the district general hospital (DGH) where the author practises. This particular e-health tool is linked with a national data-collection initiative called the IBD Registry ( and was implemented with a view to making data collection easier (Munro, 2014). At the DGH in question, the primary workload for collating information with this tool lies with nursing (medical colleagues citing time restrictions on the use of the patient management system in clinical practice).

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