A digital self-management platform for adolescent and young adult patients who have undergone a kidney transplant: a qualitative study with co-production activities
Akanksha Singh1, Kim Dr. Bul1, Andy Prof Turner1, Nithya Dr. Krishnan2, Stephen Prof Marks3,4.
1Centre of Intelligent Healthcare, Coventry University, Coventry, United Kingdom; 2Kidney transplant, University Hospitals Coventry & Warwickshire, Coventry, United Kingdom; 3Pediatric Nephrology, Great Ormond Street Hospital for Children, London, United Kingdom; 4University College London, London, United Kingdom
Introduction: Non-adherence to medication regimens is a significant risk factor in reducing graft survival following kidney transplantation in adolescent and young adult kidney transplant recipients. Digital behavioural change interventions (DBCIs) have shown promising results in improving adherence. The current qualitative study aims to repurpose module content and functionalities of an existing evidence-based digital self-management platform (so-called HOPE programme) aimed at improving treatment adherence. A user-centred driven approach has been used throughout the study.
Methods: Focus groups were performed to collect the viewpoints of recipients about their self-management needs, barriers and facilitators and possible intervention techniques in order to repurpose a digital self-management intervention for young kidney transplant patients in the age of 16 to 30 years. A total of two focus groups (ranging from between 4-6 participants in each) were carried out until no new themes emerged. Focus group data were analysed independently by two researchers using deductive thematic analysis.
Results: An understanding of the views and perceptions of the participants on their self-management needs and various challenges faced to treatment adherence were generated. Through the review of the literature and co-production activities with the HOPE platform, we prioritized various usability requirements and limitations for future iterations. We have co-produced the elements of the HOPE platform from these young kidney transplants' identified needs, which we will use to shape our virtual healthcare system.
Discussion: Actively engaging the targeted end-users in the process of repurposing the HOPE intervention successfully contributes to an effective adherence intervention that will suit the needs of young transplant patients and its broader healthcare context.
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