Why do people say “no” to a kidney transplant? Understanding patient decision making and choice.
This study is being funded by Kidney Wales, Welsh Kidney Research Unit and Betsi Cadwaladr University Health Board (BCUHB), through a KESS 2 PhD scholarship to Emma Jones to explore why people say “no” to a kidney transplant.
Renal transplant is considered the best form of renal replacement therapy for those diagnosed with end stage kidney disease increasing life expectancy and improving quality of life.
Whilst every patient has the right to refuse a kidney transplant, some patients say “no” and do not pursue renal transplantation. This is despite renal transplantation being the most suitable renal replacement option for them if they are medically suitable, increasing their life expectancy and improving quality of life, the reasons for declining or opting out of receiving a kidney transplant are unclear. Literature is limited and there is little research that has been undertaken in the UK and indicates that transplantation choice is a complex interaction of multiple factors.
1-To understand the reasons why potentially eligible patients decline a kidney transplant or disengage from the transplant work up process.
2-To develop a person-centred model that encapsulates patients’ decision-making processes when considering transplantation as a treatment choice.
To use the findings to inform the future development of a decision-making toolkit to facilitate shared understanding between patients and providers about kidney transplantation choices.
Plan of Investigation
Step one of this study will involve undertaking a systematic review to establish what is already known about why people refuse kidney transplants. Step two will utilise Grounded Theory methodology, involving interviews with people who declined a kidney transplant to identify themes leading to the development of a theoretical model grounded in the data collected that can be used to inform practice.
Emma Jones, “I am a registered nurse and have a clinical background in renal nursing spanning 21 years, having worked in haemodialysis, peritoneal dialysis, home haemodialysis, and as a renal transplant clinical nurse specialist for the past 11 years. In addition to my nursing qualification I have a Masters in Advanced Clinical Practice.
My renal nursing experience translates into a passion to undertake this research, which key aims are to explore the reasons and decision making process leading to why patients who are medically suitable for a kidney transplant refuse or disengage opting out of potentially receiving a kidney transplant”.
Professor Jane Noyes, School of Health Sciences, Bangor University
Dr Kate Shakespeare, Renal Medicine, Ysbyty Glan Clwyd, Betsi Cadwaladr University Health Board
Dr Leah McLaughlin, School of Health Sciences, Bangor University
PhD KESS 2 Student