Kidney transplant patient decision making Version 1
Research type
Research Study
Full title
Why do people say “no” to a kidney transplant? Understanding patient decision making and choice. A constructivist grounded theory study.
IRAS ID
313751
Contact name
Jane Noyes
Contact email
Sponsor organisation
Bangor University
Duration of Study in the UK
2 years, 1 months, 30 days
Research summary
Summary of Research
Kidney disease effects approximately 11%-13% of people globally, the economic impact and burden of kidney disease on the global health economy costs billions of pounds each year. More importantly are the personal costs to individuals living with kidney disease, the psychological, social, and financial impact on people’s lives is immeasurable. For people with end stage kidney disease when their kidneys no longer work, options for kidney replacement include dialysis or kidney transplantation, and for a small number of people their care is treated conservatively where they have no dialysis.
Kidney transplantation provides the most significant benefits to patients’ quality of life, reduction of comorbidity and is the optimum and cost effective treatment for advanced kidney disease. Kidney transplantation is recommended for those who are medically suitable. However, despite the known benefits of improved quality of life and decreased co-morbidities, some patients decline the opportunity of a kidney transplant and the reasons for this are unclear.
The study will involve recruiting approximately 30 patients with kidney disease from across Wales, who have previously declined a kidney transplant. Patients who meet the study inclusion criteria will be interviewed, and will be asked to share their experiences which led them to decline a kidney transplant.
The study will contribute to currently limited literature, and help renal clinicians understand the needs of people with kidney disease living in Wales. Findings will contribute to the development of information and support for people with kidney disease across Wales, and help support them when they make decisions and choices about kidney transplantation.
The study is funded through a KESS2 East scholarship to Emma Jones (Knowledge Economy Skills Scholarships (KESS2 East). KESS a pan-Wales higher level skills initiative supported by European Social Fund (ESF) through the Welsh Government, Betsi Cadwaladr University Health Board charities and Kidney Wales Charity.
Summary of Results,
Research summary Kidney transplantation is considered the optimal treatment for people living with kidney failure, offering freedom from dialysis, improved quality of life, and reduced co-morbidities associated with being on dialysis. There is little evidence explaining why some people decline a kidney transplant when they are suitable to receive one.
Aim
In this study we wanted to explore and better understand people’s perceptions and experiences of decision-making, and to understand why they declined the opportunity of a kidney transplant.
Research
This was a UK wide qualitative study, 30 people (adults aged 34 to 83 years) living with kidney failure who had decided against a kidney transplant were interviewed between August 2022 and June 2023.
Findings
Our main study found that the decision to decline a kidney transplant for the majority of people was a concrete decision.There was not solely one reason that could easily be explained. Multiple reasons were often disclosed for not wanting a kidney transplant that transcended several themes that were found from the study.
Four themes: (1) The impact of negative past experiences on kidney transplant decision-making, (2) Negative attitudes, beliefs, and perceptions towards kidney transplantation, (3) Preferred not to have a kidney transplant, and (4) Perceived benefits of deciding against a kidney transplant were developed from the interview findings.
Earlier negative experiences in people’s lives were confirmed as contributing to developing negative attitudes and perceptions towards kidney transplantation. Earlier negative experiences culminated in mistrust.
Clinicians focused on clinical outcomes and did not appreciate the extent that patient experiences contributed to transplant decision-making.
COVID-19 impacted and influenced kidney replacement decisions.
People feared kidney transplant failure and were not willing to take the risk of being worse off. Some people perceived they were too old to be transplanted, they weighed risks of age associated with worse outcomes, and preferred younger people to be offered available kidneys.
Perceived benefits of not having a kidney transplant outweighed reasons for having a kidney transplant. People decided on the kidney replacement treatment that was best for them and exercised their legal right to make an informed decision.Overall, their decisions not to have a kidney transplant (or another kidney transplant) appeared carefully thought through.
Conclusion
The findings contribute new understanding and theory as to why people living with kidney failure decide against having a kidney transplant. People’s decisions were often at odds with healthcare professionals and current policy, which aims to increase the number of people receiving a kidney transplant.
Actionable recommendations include the need for better decision-support aids and implementation of available shared decision-making tools, better training of healthcare professionals in shared decision-making with patients, further enhanced patient education resources that include information on risks and benefits, and a continuous quality improvement of care initiative to counter patient's negative experiences that impacts on their transplant decision-making.Further research is needed from the perspective of healthcare professionals, family members and carers to complete the picture, longitudinal research over time is required to determine when and why patients change their mind.
Impact
Publications
"Understanding people’s decisions when choosing or declining a kidney transplant: a qualitative evidence synthesis"
https://eur03.safelinks.protection.outlook.com/?url=https%3A%2F%2Ftrack.pstmrk.it%2F3ts%2Fbmjopen.bmj.com%252Fcontent%252F13%252F8%252Fe071348%2FNBTI%2FV2DBAQ%2FAQ%2Ff3a93359-d4dc-44e3-b507-164e62c3bb93%2F2%2F_zOIzgzZgu&data=05%7C02%7Capprovals%40hra.nhs.uk%7C1ca161980d7849e3f56208de238ca315%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C638987284127907679%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&sdata=Nb0aJD2tbqpdG5agsfnAdkSomao3HIctkNJn9ZV%2F%2Fgk%3D&reserved=0"Interpretative Phenomenological Study Exploring Why People With Kidney Failure Say ‘No’ to a Kidney Transplant"
https://eur03.safelinks.protection.outlook.com/?url=https%3A%2F%2Ftrack.pstmrk.it%2F3ts%2Fonlinelibrary.wiley.com%252Fdoi%252Fepdf%252F10.1111%252Fjan.70301%2FNBTI%2FV2DBAQ%2FAQ%2Ff3a93359-d4dc-44e3-b507-164e62c3bb93%2F3%2FnVorV87Hw3&data=05%7C02%7Capprovals%40hra.nhs.uk%7C1ca161980d7849e3f56208de238ca315%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C638987284127940941%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&sdata=u8834XCGajC8xd1DinDg%2BsGPPWbU8g5%2FsTRQzJ1G4Do%3D&reserved=0REC name
South East Scotland REC 01
REC reference
22/SS/0035
Date of REC Opinion
16 May 2022
REC opinion
Further Information Favourable Opinion