Exploring patients' decision making regarding kidney transplantation
Research type
Research Study
Full title
A qualitative exploration of patients’ knowledge, understanding, preferences and decision making processes regarding kidney allocation, entry to the kidney transplant waiting list and acceptance (or refusal) of specific organ types.
IRAS ID
216605
Contact name
Lynne Stobbart
Contact email
Sponsor organisation
Newcastle upon Tyne Hospitals NHS Foundation Trust
Duration of Study in the UK
0 years, 9 months, 0 days
Research summary
In the UK, there is a shortage of useable kidneys to meet the needs of patients on the kidney transplant waiting list and sadly, patients continue to die while waiting.
One way to tackle this shortfall is to use new techniques that allow kidneys which would not previously been considered ‘ideal’ - and therefore not usable - to be transplanted. Research suggests that some patients might benefit from an earlier transplant of a less than ideal kidney rather than waiting for an ‘ideal’ one. Decisions must be made considering risks and benefits of the options and it is recommended that patients are involved in these discussions.
Our aim is to explore what patients already know about the kidney transplant process. We will interview (up to) 40 adult patients who have made, or are about to make, a decision about managing their kidney disease. We will ask them about what they know and understand about the treatments available to them (e.g. haemodialysis, peritoneal dialysis, deceased donor transplant, living donor transplant, pre-emptive transplant and palliative management). We will look at existing research on the topic and compare this with our own data. In this study we will review the timing and type of information which patients are currently given to see if this meets their needs in the right way at the right time. We will also ask patients what they understand about the process of getting onto the waiting list, how organs are allocated and their thoughts about the possible use of poorer quality kidneys.
Following on from this work, (in a separate IRAS application) we will ask patient and public representatives to join a steering committee for a much larger piece of work where we will develop tools to help patients consider and make decisions about the best way to manage their kidney disease.REC name
East of England - Essex Research Ethics Committee
REC reference
16/EE/0555
Date of REC Opinion
15 Dec 2016
REC opinion
Favourable Opinion