Accepted for/Published in: JMIR Formative Research
Date Submitted: Aug 19, 2021
Date Accepted: Dec 28, 2021
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Developing a web-based self-management intervention for symptoms of fatigue, pain and urgency in Inflammatory Bowel Disease
ABSTRACT
Background:
Empirical studies and systematic reviews demonstrate the role of biological, cognitive, behavioural and emotional factors in fatigue, pain and urgency in inflammatory bowel disease (IBD). Behavioural management that addresses the cognitive, behavioural and emotional factors, that is offered alongside medical treatments is seldom available to people with IBD. Digital interventions provide a potentially scalable and cost-effective way of providing behavioural support to patients.
Objective:
This paper aims to describe the process of developing a supported digital self-management intervention for fatigue, pain and urgency in IBD using theory, evidence-based approaches and stakeholder input.
Methods:
The Medical Research Council framework for complex health interventions and the Person-Based Approach were used to guide intervention development consulting with 87 IBD patients and 60 nurses. These frameworks informed the selection and use of a theoretical model, which subsequently guided cognitive behaviourally-based intervention content. They also guided the design of tailored digital intervention pathways for individuals with IBD, matched to predominant symptoms.
Results:
A trans-symptomatic cognitive behavioural framework of symptom perpetuation was developed for the symptoms of fatigue, pain and urgency in IBD. A logic model was used to define intervention techniques. Patient feedback and qualitative interviews refined website content and functionalities, including use of visual aids, email reminders and graphical tracking of symptoms. Nurse focus groups informed the volume and delivery mode of therapist ‘facilitator’-support. Feasibility testing with 31 patients demonstrated accessibility (scoring 9.43/10), ease (scoring 8.07/10), clarity and relevant tone of the intervention. The final intervention consisted of 12 online sessions (8 core and 4 symptom-specific) with one 30-minute facilitator phone call following Session 1 and subsequent in-site messaging.
Conclusions:
Use of theory and integration of stakeholders’ views throughout informed development of an evidence-based digital intervention for fatigue, pain and urgency in IBD. This is the first online self-management intervention designed to address these multiple symptoms with the aim of improving quality of life and reducing symptom burden in IBD. The intervention is being tested in a large multi-centre randomised controlled trial.
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