The results of the 2021 Kidney Patient Report Experience Measure (PREM) have been released.
We would like to thank everyone who took part; we had over 12,000 responses from people living with kidney disease. By sharing your views of your own experience of kidney care you are helping to shape improvements to care and outcomes for all kidney patients.
What is PREM?
PREM stands for Patient Reported Experience Measures. The Kidney PREM is an annual national survey of UK kidney patients that aims to:
- Help renal unit teams understand how patients feel about their experience of care
- Show where improvement can be made from a patient perspective
- Provide a national picture of people’s experience of care
The Kidney PREM is led by Kidney Care UK, the UK's leading kidney patient support charity, and The UK Kidney Association, the professional organisation for the UK kidney community.
How are the PREM results compiled?
In 2021, the Kidney PREM was available both online and as a paper survey in unit, and was completed by 12,416 people with kidney disease. Four out of five of those completing Kidney PREM did so online.
The survey is open to everyone living with chronic kidney disease who is aged 17 or over and attends a UK hospital kidney centre or satellite unit. This includes people who have a working kidney transplant.
The survey was co-designed by patients, clinicians, and researchers. As well as demographic questions that cover age, gender, ethnicity and treatment, there are 38 questions covering 13 key themes that people with kidney disease say are important aspects of kidney care to them and a question about their overall experience of kidney care:
- Access to renal team
- Patient information
- Fluid and diet
- Shared decision making
- Privacy and dignity
- Scheduling and planning
- How the renal team treats you
- The environment
- A question on the impact of COVID-19 was included in 2020 and again in 2021
Patients are asked to rate their experience on a scale of 1-7 where 1 is the lowest and 7 is the highest. Average scores are reported for each question and for each centre. Some centres had only a few responses so these may not represent the views of all the people who attend these centres.
What are the key headlines from the 2021 Kidney PREM survey?
What were the scores for overall experience of care by kidney centre?
Overall experience by kidney centre scored highly at 6.24 out of 7. Most centres received an overall rating between 5-7, with five centres receiving entirely positive scores. Many centres have a small but significant proportion of patients scoring overall experience poorly, between 1-3.
What impact did COVID-19 have on patient experience of care in 2021?
Overall, people’s experience of kidney care was more likely to have been better or stayed the same than be worse during the last year of the pandemic. People receiving in-satellite and in-centre haemodialysis remain far more likely than others to feel that experience of care has stayed the same or improved. In turn, those on home therapies or with a transplant report a generally better experience than people with CKD not receiving KRT.
What comments did people make in the 2021 PREM survey?
In 2021, 3,877 people completing Kidney PREM survey online provided free text comments which were read by researchers and grouped together by subject, some of which overlapped with the 13 themes in the Kidney PREM.
In both 2020 and 2021, positive comments about the kidney team were by far the most common feedback given.
- Younger patients tended to comment on the need for support including general support for young people with kidney disease, and also financial support.
- People who are older commented on Environment, including the need for more comfortable chairs, and the suitability of hospital provided Transport.
- Comments relating to Environment featured highly in both 2021 and 2020 and were mostly negative; relating to comfort, temperature control, and waiting areas.
- Support accounts for a far greater proportion of comments in 2021 compared to 2020, particularly psychological support and how this is lacking.
- In both 2021 and 2020, people commented on lack of Information, particularly updates about treatment, kidney disease progression, and transplant prospects. People also want more access to advice about diet, fluid intake and exercise.
How can I find my kidney centre’s results?
If you would like to look more closely at the data for your centre or unit, this can be seen online via the Kidney PREM portal where you can search the results by question, year, and hospital.
We recommend you ask your kidney team about your centre’s PREM results and find out if they are creating an action plan for improvement and how to get involved if you would like to.
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