Utilising new technologies and supported self-management to enhance the inflammatory bowel disease patient pathway: pilot, feasibility and development studies

Abstract

Inflammatory bowel disease (IBD) is a lifelong relapsing/remitting condition. Early diagnosis and treatment can have a considerable impact on disease course and quality of life. Traditionally, IBD is managed in a specialist outpatient setting, however outpatient review may not always coincide with times of greatest need. The growth of eHealth technology has led to the development of new interactive self-management websites or ‘portals’ which allow remote self- monitoring and communication between patients and health providers. New diagnostic technologies for IBD are also becoming increasingly available. Faecal calprotectin (FC) testing can sensitively detect bowel inflammation and is used to aid diagnosis of IBD and predict disease flare in existing IBD. Recently, home-testing kits have been developed which, combined with a smartphone app, can provide rapid assessment of IBD activity.

The aim of this thesis is to present three projects which explore the development and use of new diagnostic and self-management technologies to enhance the traditional IBD outpatient pathway: piloting the use of FC testing in primary care and its impact upon general practitioners’ plans to refer, assessing the feasibility and acceptability of using the My Medical Record (MyMR) digital patient portal and home FC testing for disease monitoring in patients who have stopped a treatment for IBD, and developing a digital Virtual Clinic for remote follow-up of more stable patients. These projects were informed by a systematic review of the literature exploring if interactive digital self-management interventions improve patient outcomes for IBD.

The primary care pilot study confirmed the clinical utility of FC testing as a screening tool when differentiating IBD from irritable bowel syndrome (IBS). It was observed that a negative calprotectin appeared to reverse a significant proportion of initial GP plans to refer to secondary care. In the feasibility study, recruitment was challenging but qualitative work demonstrated that home monitoring using MyMR and FC testing was acceptable and provided significant reassurance to a potentially vulnerable group of patients at greater risk of disease flare. A novel fully digital Virtual IBD clinic was established to oversee monitoring and support for more stable IBD patients. Normalisation Process Theory helped to reflect on barriers and facilitators to developing and implementing this new technology, particularly the need for greater engagement of key clerical and nursing stakeholders in the project. These studies explore how both FC and supported self-management via a digital portal have the potential to modernise and enhance key areas in the IBD patient pathway from diagnosis through to monitoring, but also highlight the challenges of implementing new technologies into established models of care.

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Identifiers

ORCID for Hazel Everitt: orcid.org/0000-0001-7362-8403

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