The co-development of ‘My Kidneys & Me’: a digital self-management programme for people with chronic kidney disease (Preprint)

Abstract

BACKGROUND Healthcare self-management is important for people living with non-dialysis chronic kidney disease (CKD). However, the few available resources are of variable quality. OBJECTIVE This work describes the systematic co-development of ‘My Kidneys & Me’ (MK&M), a theory-driven and evidenced-based digital self-management resource for people with non-dialysis CKD, guided by an established process used for the successful development of the diabetes education programme MyDESMOND. METHODS A multidisciplinary steering group comprising kidney healthcare professionals and researchers, and specialists in the development of complex interventions and digital health provided expertise in the clinical and psychosocial aspects of CKD, self-management, digital health, and behaviour change. A Patient and Public Involvement group helped identify the needs and priorities of MK&M, and co-design the resource. The development of MK&M was conducted in two sequential phases. Phase 1 involved the co-development process of the MK&M resource (content and materials), using Intervention Mapping (IM) as a framework. The first four IM steps guided the development process: (1) needs assessment to describe the context of the intervention was conducted; (2) intervention outcomes, performance objectives, and behavioural determinants were identified; (3) theory- and evidenced-based change methods and practical strategies to deliver change methods were selected; and (4) programme components were developed and refined. Phase 2 involved the adoption and adaptation of the existing MyDESMOND digital platform to suit the MK&M resource. RESULTS The needs assessment identified that individuals with CKD have multiple differing needs, and that delivering a self-management programme digitally would enable accessible, tailored, and interactive information and support. The intended outcomes of the MK&M programme were to improve and maintain effective self-management behaviours, including physical activity and lifestyle, improve knowledge, promote self-care skills, increase self-efficacy, and enhance well-being. This was achieved through provision of content and materials designed to increase CKD knowledge, patient activation, reduce health risks, managing symptoms, and improve physical function. Theories and behaviour change techniques selected include Self-Management Framework, COM-B components of Behaviour Change Wheel and Taxonomy of Behaviour Change Techniques, Health Action Process Approach Model, Common Sense Model, Social Cognitive Theory. The programme components developed comprised educational and behaviour change sessions, health trackers (e.g., monitoring blood pressure, symptoms, exercise), goal setting features, and forums for social support. The MyDESMOND digital platform represented an ideal existing platform to host MK&M, thus the MyDESMOND interface and features were adopted and adapted for MK&M. CONCLUSIONS Applying the IM framework enabled the systematic application of theory, empirical evidence, and practical perspectives in the co-development of MK&M content and materials. Adopting and adapting a pre-existing platform provided a cost- and time-efficient approach to developing our digital intervention. In the next stage of work, the efficacy of MK&M in increasing patient activation will be tested in a randomised controlled trial.

‘Self-Management Intervention through Lifestyle Education for Kidney health’ (the SMILE-K study): protocol for a single-blind longitudinal randomised controlled trial with nested pilot study

“…The ‘My Kidneys & Me’ programme forms part of the award-winning and quality-assured MyDESMOND e-learning platform 22 24. The educational sessions provide information about the kidneys, CKD, its treatment and the different ways to self-manage and is written to accommodate for those with low patient activation levels.…”

‘Self-Management Intervention through Lifestyle Education for Kidney health’ (the SMILE-K study): protocol for a single-blind longitudinal randomised control trial with nested pilot study

“…A full description of how patients and their families were involved in the development of the programme can be found in Lightfoot et al 21 . In summary, a study patient steering group was formed consisting of ten individuals living with kidney disease and two family members.…”

“…The 'My Kidneys & Me' programme forms part of the award-winning and quality assured MyDESMOND e-learning platform 21 . The educational sessions provide information about the kidneys, CKD, its treatment, and the different ways to self-manage and is written to accommodate for those with low patient activation levels.…”

“…Topics of the subsequent interviews will include experiences of the intervention, the quality of the content, the quality of the delivery method, reasons for non-adherence with the intervention, and healthcare usage. A full description of how patients and their families were involved in the development of the programme can be found in Lightfoot et al 21 . In summary, a study patient steering group was formed consisting of ten individuals living with kidney disease and two family members.…”

“…The programme was developed using 'Intervention Mapping', a six-step framework used to guide behaviour change interventions and health education development 20 . A full and detailed description of the development of 'My Kidneys & Me' can be found in Lightfoot et al 21 .…”