Monitoring biologics in inflammatory bowel disease (IBD) using the Patients Know Best electronic portal: pilot study of uptake, acceptability and outcomes

Abstract

Background: The number of inflammatory bowel disease (IBD) patients on biologics in the UK is increasing; this and the expansion of available drugs have contributed to delays in delivering treatment. E-health applications, such as the Patients Know Best (PKB) personal online healthcare record system, can improve efficiency of patient management in stable IBD. This pilot study aimed to explore the uptake, acceptability and outcomes of PKB in the management of patients starting biologics. Methods: IBD patients prescribed biologics were invited to register and trained online. The authors measured the number of new starters, PKB registrants, time intervals to treatment and the nature of online activity. Patients using the application received an evaluation questionnaire 6 months after enrolment. Results: Out of 40 patients newly started on biologics, 33 years were included, with a mean (SD) age of 44.3 (13.3) years. The mean time interval from decision to treatment administration was 82.7 days (44.0). Ten patients raised at least one issue on PKB; 45 new issues were raised, mostly relevant to active disease (18/45), adverse events of treatments (6/45) and the funding application process (5/45)—39 were resolved online. Of patients, 16 answered the questionnaire, and 11 found it at least somewhat helpful. More training was requested. Conclusions: The use of PKB did not accelerate the process of drug administration. However, patients engaged with the use of the platform, several issues were raised and most of these were resolved electronically. Regular training and individual treatment plans for patients starting biologics may optimise PKB's use for long-term monitoring.