UK Renal Registry

ILD145

Electronic personal health records (ePHRs) provide individuals with access to their personal health information, with the aim of informing them about their health, promoting self-management and improving care outcomes. Although their use has been associated with improved health outcomes for adult patients with chronic disease, knowledge of their uptake among families caring for children and young people with a chronic disease and their impact on health outcomes is limited. This study will examine the uptake and use of PKB (a national ePHR) for children and young people with kidney failure and identify whether there are important variations in usage among this population. We will use UK Renal Registry data to identify a cohort of children aged under 18 years receiving long-term kidney replacement therapy at the end of 2022 in the UK. We expect this will be close to 1000 children. We will use an established linkage between PKB and the UK Renal Registry to identify whether there is a registered patient or parent account for each individual in the cohort. We will then examine whether there are differences in the registered and unregistered population by demographic or clinical characteristics. If evidence of inequality exists, we anticipate this will lead to further research to understand the potential factors causing this and develop interventions to address them. This will be the first step in tackling differences in access to best kidney care which are avoidable. We expect this project will lead the way for further work to test ways to make kidney transplantation more available for all children and young people with kidney failure.