To dialyse or not to dialyse? That is the question, and it’s an especially challenging and complex one for people with advanced kidney disease. New research kicking off later this year will investigate how kidney clinicians engage with and support older people making this decision, with the aim of improving this crucial communication and better supporting patients.
The OSCAR study (Optimising Staff-patient Communication in Advanced Renal Disease) will be led by Dr Lucy Selman at the University of Bristol, funded by the National Institute of Health Research (NIHR). Here, Dr Selman introduces the research and some of her recently published work in this area.
Every day in the UK, 10 people over 65 develop kidney failure and must decide on what treatment to have. As most of the people in this group are too unwell for transplantation, their choice is typically between dialysis or “comprehensive conservative care”, which involves all aspects of good kidney disease management without dialysis. Often, the renal team delivers conservative care alongside specialist palliative care clinicians, who are experts in managing symptoms and supporting people through the final stages of illness.
Deciding whether or not to have dialysis can be a difficult decision. Dialysis generally lengthens life, but this is not guaranteed for older people, especially those with additional health problems. And dialysis often reduces a patient’s quality of life: for most, it entails several lengthy visits to the hospital every week to receive haemodialysis, and it can be challenging both physically and psychologically. For these reasons, some older people decide to have conservative care instead.
There’s evidence that at some renal units about 5% of older people don’t have dialysis, while at others 95% do.
People with kidney disease rely on their specialist clinicians to help them decide which treatment to have, but the way clinicians discuss treatment options varies widely, and so does the information they provide to their patients. This is reflected in wide variation in patient ratings of the quality of decision-making support across renal units, as reported in the 2018 Kidney Patient Reported Experience Measures (PREM) survey. As a result, there’s huge variation in treatment rates across the UK. In fact, there’s evidence that at some renal units about 5% of older people don’t have dialysis, while at others 95% do. This stunning disparity suggests that treatment decision-making is not always person-centred (i.e. based on patients’ needs and preferences).
The OSCAR study
OSCAR is a 4-year research study which aims to better understand and improve this situation.
During the study we will investigate how kidney doctors and nurses communicate with older people with advanced kidney disease when they’re deciding what treatment to have. This will involve interviewing staff, patients and their family members or caregivers, and video-recording consultations between patients and clinicians across five renal units in the UK.
With the findings from these interviews and observations, we will develop a package, including staff training, to enhance how kidney clinicians communicate, and help them provide person-centred support and accurate information to patients making this decision. We will work with a Stakeholder Panel that includes clinicians and patients to ensure the package is appropriate and acceptable, and pilot it with staff.
OSCAR will focus on patients for whom there is no clear “best option” when deciding between treatments. That means adults with advanced, chronic kidney disease who are 80 years’ old or older, and patients between 65 and 79 years’ old who have kidney disease combined with other health problems.
OSCAR was motivated by speaking to patients about what is important to them and the aspects of their healthcare they thought could be improved. It was also informed by a research study I recently published, based on interviews with 20 older people receiving conservative care, which explored their experiences of communicating with their clinicians. Our study had three key findings:
- Participants reported variable quality in communication with clinicians and gaps in the information received, particularly regarding diagnosis and disease progression. They felt that staff avoided or struggled with conversations about what to expect with advancing renal disease, which meant patients did not know what symptoms or problems were because of the disease, and worried about what would happen as they became more ill, including where they would be cared for.
- In general, patients wanted information about kidney disease and their treatment options, but not all patients wanted as much information as possible. Several were unsure about receiving information about their prognosis, or preferred not to know details. It is therefore critical that kidney clinicians understand patient preferences, tailor information accordingly, and convey it clearly and sensitively.
- Clinicians’ treatment recommendations played a crucial role in patients’ decision-making, and some clinicians initially challenged participants’ decision not to have dialysis. For example, when asked whether she or the doctor made the decision not to have dialysis, one participant said “I say no. [My daughter] say no. Doctors say yes [laughs].” We concluded that future research should examine how clinicians’ communication practices influence treatment decision-making, and determine how best to support and train renal clinicians to provide patient-centred decision-making support. This is where OSCAR comes in.
Our published work highlighted problems with how kidney clinicians communicate with patients about their illness and treatment, and with how they support patients choosing between treatments. In an additional study, we found that these communication problems added to the difficulties experienced by people living with kidney disease.
We hope that OSCAR will help to improve how clinicians communicate with and support older patients across the UK. It has been designed to complement a randomised controlled trial currently underway in the UK – Prepare for Kidney Care. Together these two studies will provide high quality, unbiased information about the experiences of patients that can then be used to improve how renal clinicians communicate with patients and their carers. To learn more about the study, launching later this year, follow @OSCAR_study on Twitter or contact me, Dr Lucy Selman, to be added to the study mailing list.
The OSCAR study is funded by the National Institute for Health Research (NIHR) [Career Development Fellowship (Grant Reference Number CDF-2018-11-ST2-009)]. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.
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