Innovative education for people with chronic kidney disease: an evaluation study

Background An innovative Community Kidney Service has been running since 2016 in four health regions in East London, UK. This paper focuses on the patient education (self-management) programme within the service. Objective To understand the experiences of people with stage 1 – 3b chronic kidney disease invited to individual or group education sessions. To assess the usefulness of the programme’s educational resources to primary care nurses. Design A mixed-method project. A steering group involving patients shaped both survey and interview questions. Participants Paper surveys (n=266) were sent to patients 7-19 months after they had attended. Semi-structured interviews were undertaken with patients who returned the survey and indicated they were willing to be interviewed (n=9). Survey links were sent electronically to primary care nurses. Results 54 surveys were returned from patients. The education session increased self-reported knowledge about kidney disease and two thirds of patients reported making lifestyle changes. Analysis of interview data identified recognition of kidney disease, motivation to change and reliance on ‘experts’ as key themes. Surveys were returned from 21 nurses. Most were aware of the community kidney service but only one third had used the education resources with their patients. Conclusions Secondary care nursing involvement in primary care-based education for people with kidney disease is rare in the UK and internationally. This educational intervention, developed with patients, supports people to make changes that have the potential to reduce progression of kidney disease and our findings have significance for other teams working in chronic kidney disease management.