Engaging patients in the development and use of a self-management behaviour scale for patients with chronic kidney disease on dialysis in the UK.

We have been developing a self-management behaviour scale throughout 2018/2019, funded by a previous BRS award (Development of a self-management behaviour scale for people with Chronic Kidney Disease on dialysis in the UK, 13th December 2016) and preceded by the NIHR Self-Made study (referenced above). Using quantitative and qualitative methods and expert and patient involvement, we’ve developed a set of questions to help identify support needs.
Development of the scale is in the final phase; recruitment of 600 patients across 3 hospitals will provide data for validation of the scale by end 2019.
The next stage is to inform how the validated version of the CKD self-management behaviour scale may work in practice in local renal services. By engaging with users of the research such as service managers, clinical staff and patients, a qualitative exploration of how this tool will be implemented in clinical practice to increase patient benefit will be undertaken. The study consists of three phases, we will:
1. Facilitate a qualitative stakeholder group comprising at least one clinician, renal nurse, dietician, health psychologist, social worker, renal counsellor, peer mentor, renal charity colleague and at least 3 dialysis and/or transplant patients and health literacy expert. The group will review the baseline findings from the study already funded and currently running (meeting 1) and the qualitative data from this study (meeting 2) and discuss the main gaps in support how it varies, how the scale can work in practice to promote self-management and patient-centred care, possible difficulties with implementation and how to assess impact.

2. Conduct qualitative interviews with patients, clinicians, renal nurses, dieticians, counsellors/psychologist and senior managers across 4 hospitals to determine acceptability and look at local capacity. In addition, interview 6 patients from the final phase of the 2018/19 study about experiences of completing the questionnaire. Using similar questions but also asking about any consequences of participation in the study, changes in engagement in self-management etc.

3. Development of an implementation strategy including guidance for clinical and research use.

This qualitative study will enable us to look at wider implementation and think about how clinical and patient guidance should be structured and the scale rolled out nationally. It will also seek to identify what effective changes could be made using existing resources or proven interventions to help support self-management behaviours in patients once gaps in support are identified.