SPEAK – Surveying People Experiencing Young Adult Kidney Failure
Being aged 17-23 dramatically increases the risk of losing a transplant. Yet we know comparatively little about the experiences of young adults with kidney failure. Renal registry data is also incomplete for some people in this age group. We needed to learn more about the social and medical outcomes for young adults in the UK to address this critical gap. When we know more about their needs we can improve service delivery, identify potential risk factors and reduce adverse outcomes.
The SPEAK study is a research study funded by Kidney Research UK and Kidney Care UK, and part of the CRN portfolio. Researchers undertook a nationwide survey and recruited centres across the UK to participate. They asked people between the ages of 16 – 30 with a kidney transplant or on dialysis, in the UK to take part over 2 years.
Nearly 1,000 surveys were collected filling a vital gap in understanding in this age group of patients with kidney failure. The details in the data are currently being analysed and will report very shortly. You can read more about the study and follow it here https://www.renalreg.org/projects/speak/ . Cardiff was the highest recruiting centre.
The first comprehensive data set on this age group will: improve service delivery, transitional services in kidney care on a national scale; improve clinical understanding of adverse outcomes, reducing the number of failed transplants in young adults.
Improvements in data and record keeping in renal care. All UK renal units took part in this study. Data can be accessed by clinicians, carers and researchers to address other key issues for this cohort.
Increasing young people’s participation in research. Nearly 1,000 young people with kidney disease contributed to the research study. These patients will have had new experiences relevant to them and their condition.
New contact and links with services who work with young adults and shared learning with the NHS and social care sector.
You can read more here https://www.ajkd.org/article/S0272-6386(18)30906-5/fulltext and here https://cjasn.asnjournals.org/content/13/11/1669