The Codevelopment of “My Kidneys & Me”: A Digital Self-management Program for People With Chronic Kidney Disease

Abstract

Background Health care self-management is important for people living with nondialysis chronic kidney disease (CKD). However, the few available resources are of variable quality. Objective This work describes the systematic codevelopment of “My Kidneys & Me” (MK&M), a theory-driven and evidence-based digital self-management resource for people with nondialysis CKD, guided by an established process used for the successful development of the diabetes education program MyDESMOND (Diabetes Education and Self-Management for Ongoing and Newly Diagnosed, DESMOND). Methods A multidisciplinary steering group comprising kidney health care 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 behavior change. A patient and public involvement group helped identify the needs and priorities of MK&M and co-design the resource. MK&M was developed in 2 sequential phases. Phase 1 involved the codevelopment process of the MK&M resource (content and materials), using Intervention Mapping (IM) as a framework. The first 4 IM steps guided the development process: needs assessment was conducted to describe the context of the intervention; intervention outcomes, performance objectives, and behavioral determinants were identified; theory- and evidence-based change methods and practical strategies to deliver change methods were selected; and program 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 program digitally would enable accessible, tailored, and interactive information and support. The intended outcomes of MK&M were to improve and maintain effective self-management behaviors, including physical activity and lifestyle, improve knowledge, promote self-care skills, increase self-efficacy, and enhance well-being. This was achieved through the provision of content and materials designed to increase CKD knowledge and patient activation, reduce health risks, manage symptoms, and improve physical function. Theories and behavior change techniques selected include Self-Management Framework, Capability, Opportunity, Motivation Behavior model components of Behaviour Change Wheel and taxonomy of behavior change techniques, Health Action Process Approach Model, Common Sense Model, and Social Cognitive Theory. The program components developed comprised educational and behavior change sessions, health trackers (eg, monitoring blood pressure, symptoms, and 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 codevelopment of MK&M content and materials. Adopting and adapting a preexisting platform provided a cost- and time-efficient approach for developing our digital intervention. In the next stage of work, the efficacy of MK&M in increasing patient activation will be tested in a randomized 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. A summary of the education sessions can be in the My Kidneys & Me development paper.…”

“…A summary of the education sessions can be in the My Kidneys & Me development paper. 22 24 ‘How to’ booster sessions are interactive educational sessions, which provide instructions on how to perform the self-management behaviours and are released weekly. A summary of these sessions is found in table 1 .…”

“…A full description of how patients and their families were involved in the development of the programme can be found in Lightfoot. 22 24 In summary, a study patient steering group was formed consisting of 10 individuals living with kidney disease and two family members. An initial priority setting workshop determined key topics of interest to this group, including lack of educational support from healthcare professionals.…”

“… 21 A full and detailed description of the development of ‘My Kidneys & Me’ can be found in Lightfoot. 22 …”

“…The programme was developed using ‘Intervention Mapping’, a six-step framework used to guide behaviour change interventions and health education development 21. A full and detailed description of the development of ‘My Kidneys & Me’ can be found in Lightfoot 22…”