Dr Kerry Rosenberg BSc, MBBS, MRCP, Renal Registrar, Royal Free Hospital is carrying out research into “Dialysis decision making in advanced CKD – examining the experience of BAME patients in the UK”.
The perspectives and experiences of people living with kidney disease are invaluable in planning a project of this type. If you are a kidney patient, interested in helping with research and find that this idea resonates with you, your help would be much appreciated. Details of how to help are included below.
Why is this research important?
Kidney doctors in the UK care for an extremely diverse population (1) and health inequality amongst BAME patients with kidney disease has become an important focus for research. Existing studies suggest that ethnic minority patients face additional barriers to accessing care at several points in their kidney journey and there is an urgent need for further research to fully understand these inequalities and instigate change (2).
Decision making in advanced chronic kidney disease (CKD) is an area in which the experience of BAME patients has not previously been studied. For older and more frail patients in particular, the decision to have dialysis is complex. Dialysis can be a burdensome treatment and for some people may negatively affect quality of life, without offering a significant increase in life expectancy (3). For some of these patients, conservative care (i.e. symptom control and treatment of the complications of CKD without dialysis) may provide a treatment pathway more in line with their priorities.
There is very little existing research focused on access to conservative care in BAME patients. However, there is evidence to suggest that ethnic minority patients face additional barriers to advanced care planning (i.e. planning for what a person may want in the event of a deterioration in health) and palliative care (i.e. holistic management of symptoms in chronically ill people, including those at end of life) compared to white counterparts (4; 5). We therefore suspect that BAME patients may face similar challenges when it comes to decision making in advanced kidney disease and choosing the right treatment option for them.
What is the goal of this project?
This project is in the very early stage of planning, but ultimately aims to answer 3 key questions:
- Do ethnic minority patients with advanced kidney disease face additional challenges or barriers when it comes to making the right treatment decision for them?
- Are ethnic minority patients proportionately represented amongst those who choose a conservative care treatment pathway?
- What patient, doctor or systems factors exist, which help or hinder these difficult decisions?
How can you help?
The perspectives and experiences of people living with kidney disease are invaluable in planning a project of this type. If you are a kidney patient, interested in helping with research and find that this idea resonates with you, your help would be much appreciated.
As part of your involvement, you would be asked to join a Zoom call every 3 to 4 months, to discuss ideas with the doctors involved and other patients. You may also be asked to share your opinions on documents, such as patient information sheets and questionnaires, which are important to the project.
If you would like to be involved, please send an email to:
References (indicated in italics in the text above):
- UK Renal Registry (2021) UK Renal Registry 23rd Annual Report – data to 31/12/2019, Bristol, UK
- Wilkinson E, Brettle A, Waqar M, Randhawa G. Inequalities and outcomes: end stage kidney disease in ethnic minorities. BMC Nephrol. 2019 Jun 26;20(1):234
- Murphy E, Burns A, Murtagh FEM, Rooshenas L, Caskey FJ. The Prepare for Kidney Care Study: prepare for renal dialysis versus responsive management in advanced chronic kidney disease. Nephrol Dial Transplant. 2021;36(6):975-982
- Race, Ethnicity, and End-of-Life Care in Dialysis Patients in the United States; Robert N. Foley, Donal J. Sexton, Paul Drawz, Areef Ishani, Scott Reule, JASN Sep 2018, 29 (9) 2387-2399
- Yumeng Wen, Changchuan Jiang, Holly M. Koncicki, Carol R. Horowitz, Richard S. Cooper, Aparna Saha, Steven G. Coca, Girish N. Nadkarni, Lili Chan, Trends and Racial Disparities of Palliative Care Use among Hospitalized Patients with ESKD on Dialysis, JASN Sep 2019, 30 (9) 1687-1696