Abstract
Paediatric Inflammatory Bowel Disease (IBD) can significantly affect a child’s physical and psychological well-being, and the incidence is increasing globally. An emerging focus of paediatric IBD care that has the potential to improve disease outcomes is that of self-management, whereby children are encouraged to develop skills and attributes to enable them to manage their own disease and treatment. Self-management comprises a number of intertwined elements; knowledge, adherence, self-regulation, and communication. In order to provide targeted support in these areas’ children should be frequently assessed to highlight gaps or misconceptions that may affect their disease outcomes. Few self-management outcome measures are available for this population group. The aim of this research was to undertake a series of projects to develop and validate assessment and reporting tools that address components of self-management in order to provide targeted education and support for children with IBD. This research also contributed to the design of a mobile health app that is aimed at encouraging children with IBD to self-manage their disease.
Section one explains the detailed, iterative development process of a mobile health app aimed at encouraging self-management for children with IBD: IBD-Tracker.
Section two presents the development process of a knowledge assessment tool for children with IBD: IBD-KID2. A series of studies were performed to assess the validity, reliability, feasibility, and generalisability of IBD-KID2, as well as testing IBD knowledge levels in different population groups.
Section three details the development of a symptom self-report tool for children with IBD that uses a series of text and pictorial Likert scales that enables children to report their IBD symptoms: IBDnow. A study performed in two tertiary paediatric IBD centres showed that children from the age of three years can use IBDnow to produce symptom reports with a good level of agreement to reports from their gastroenterologist when using standard validated clinical tools.
Section four contains a systematic literature review undertaken to identify self-management skills assessment tools specific to the target population, none of which were appropriate for use with younger children with IBD. Using the available evidence, a novel self-management skills assessment tool was developed: IBD-STAR. A content validity evaluation by a series of experts appraised the relevance, appropriateness, and likely effectiveness for the target population. A study then compared the children’s skills assessment using IBD-STAR with an assessment undertaken by their parents, and gastroenterologist. This showed that children’s reported skills using IBD-STAR correlated well with their gastroenterologist’s assessment, but their skills were underestimated by their parents.
Section five assessed whether the content of the mHealth app IBD-Tracker, when delivered in an alternative format (booklet) was effective and acceptable regardless of the mode of delivery. The results highlighted a positive trend towards improving self-management outcomes, but the response rates and feedback suggest that interventions aimed at children should prioritise engagement in addition to ensuring a strong evidence base for the content.
Children with IBD should have multi-disciplinary support as they develop self-management skills. This series of studies has provided a number of outcome measures to address the various components of self-management for children with IBD that will highlight where targeted interventions, such as a mobile health app, may be effective.