How is Your Renal Unit doing?

How is Your Renal Unit doing?

Have you ever wondered if the performance of your own renal unit is as good as you and the professionals in your unit want? Are some Renal Units in the UK better than others in some aspects of care? Well, the Renal Registry is helping to find out.

The Registry collects information from Renal Units and compares take-on rates for dialysis, death rates, haemoglobin levels and lots of other outcomes. The majority of Renal Units contribute data, although (in 2002) some parts of Birmingham, Manchester and London are not covered. In the next 2 years, nearly all of the country will be taking part.

The information is published on www.renalreg.com. Please browse this, but be aware that the report is produced for health professionals, and has not been written to make it easy for patients to understand.

At present, most of the information is coded, so you cannot tell which Renal Unit is which. Although you can see that there are differences between units, but you cannot tell which is your own. You can ask your doctors for your unit’s code number.

Although the Registry seems to show big differences between units in important areas - adequacy of dialysis, numbers of people starting dialysis, for example, these do not necessarily mean that one unit is better than another. Where there are big differences between units, the most likely explanation is not poor performance, but slightly different ways of collecting data. It is not as simple as you might think to collect and display the outcomes of treatments. However, there are also some real differences in performance. Most units recognise that they have excellent performance in some areas, and less good in others. The Renal Registry will help all units improve their performance and improve patient care.

Here is some more information about the Renal Registry.

Introduction to the Renal Registry and the Annual Report

The primary intention of the UK Renal Registry is to carefully monitor the quantity and quality of renal care in the UK, and thus to improve the quality and efficiency of this care. The Registry provides an annual report to facilitate this process. The report will enable internal audit within renal centres, allow units to compare themselves to other units, and provide information to stimulate and inform the process of improving patient care.

The UK Renal Registry is part of the pioneering work of the Renal Association. The Renal Association is the main professional body for doctors working in kidney diseases in the UK. The Renal Association holds scientific meetings, and has set standards for the care of people with kidney diseases (available from www.renal.org/standardscontents.htm). The audit and research work of the Registry is essential implementing those standards.

• The role of the Renal Registry for patients - The ultimate aim of the Registry is to improve care for patients with renal disease. Appropriate use of the Registry information should improve equity of access to care, adequacy of facilities, availability of important but high cost therapies such as erythropoietin, and appropriate and efficient use of resources. The continuing comparative audit of the quality of care should facilitate improvement of care and outcomes of care. It is intended to identify and publish examples of good practice. In these ways patients will be the ultimate beneficiaries of the exercise.
• Overview of Report - The Report is set out with a discussion on the new patients starting renal replacement therapy in the year. The ethnic mix of patients, their ages and the proportions treated with haemodialysis and peritoneal dialysis are described. Similar information is given on current renal replacement therapy patients. This leads on to comparisons between centres of the amount of dialysis given, blood counts achieved and other biochemical parameters.
• Confidentiality - Each centre included in the Report has been labelled by a letter of the alphabet. The code letter allocated to a centre is constant throughout the Report. Each centre and the centres chief executive is informed of which code letter they are. Other renal units are not aware of another centres code. Only three of the Registry staff have access to all the codes. This confidentiality has been protected while interpretation of the data remains difficult. Centres can choose to make their code public, so do ask your unit if you can know the local code, which may help you understand the report better.

Many centres have financial resource limitations restricting for example take-on rates and erythropoietin prescribing The variation within the Report in some of these areas may not be representing differences in medical practice but differences in available resources. The data in the Report has therefore been valuable in contract negotiations between renal units and commissioners of renal services.



• Graphical presentation - Many of the comparative graphs in the Report have a vertical line at the data point which is called the 95% confidence interval. This is a mathematical calculation hich shows the range that the value for that centre may fall within, with a 95% certainty, if the data were re-measured within a short time interval. When comparing centres this potential variation needs to be taken into account.
• Comparison of data between centres - It is very difficult accurately to compare data between centres as the mix of patients varies. Some renal units have many older patients, others more diabetic patients or a different ethnic mix. When comparing the difference in patient survival between renal units, the variation may have occurred because one of the centres covers an older population group and therefore the average age of the patients is much older.

It is possible to apply a statistical correction to each centres data to recalculate the survival at the centre as though all the centres had the same patient age. This correction has been applied when the text says that an adjusted survival has been calculated. Similarly, it has been possible in some instances to add a correction for the variation in the percentage of diabetic patients between centres.

In spite of these adjustments, comparison of survival between centres still remains difficult as it has not been possible to adjust for all the important factors. Many patients on renal replacement therapy have additional illnesses like heart disease (angina, previous heart attacks), a stroke or cancer. The more patients treated with these conditions, the poorer will be the apparent survival for that centre. The documentation of these additional illness for each patient by each centre is currently very incomplete and so it has not been possible to take these factors into account in the statistical adjustment. It is though, very important not to discourage centres from treating these sicker groups of patients so these factors must be kept in mind as the possible reason for the differences between centres.



• Standards of Care - In 1997, the UK Renal Association published its second Standards document on treatment of adult patients in renal failure. This covered many topics from dialysis water quality to blood pressure.

The strength of scientific evidence for these Standards varies and in the document was allocated to one of three levels :-

1. Evidence from at least one properly performed randomised controlled trial or meta-analysis of several controlled trials.
2. Well conducted clinical studies, but no randomised clinical trials; evidence may be extensive but essentially descriptive.
3. Evidence obtained from expert committee reports or opinions, and/or clinical experience of respected authorities.

Unfortunately, much of the current evidence for Standards is of level B-C and it is hoped that the Renal Registry will in future provide evidence for a stronger basis for the Standards.

In some cases, the Renal Association has recommended Standards, which the Registry has now demonstrated that no renal unit is able to achieve. The good example of this problem is serum phosphate control. The Standards document recommends that the blood levels of phosphate should be kept etween 1.2 1.7 mmol/L (close within the limits for patients not in renal failure). Even with the best dialysis techniques it is not possible to achieve this goal. Only 40% of patients at the best performing centre in the UK reached this Standard. Indeed, serum phosphate levels of patient in the USA (the only other available published data) are no different to patients in the UK indicating that this is probably a universal problem. There is now some recent evidence that a very high level of phosphate in the blood (greater than 2.1 mmol/L) does reduce survival. Although an intermediate phosphate between 1.7 - 2.1 mmol/L does not reduce survival on dialysis, it is unknown whether it has any other important disadvantages (eg increased calcification in some parts of the body). For general information about phosphate, click here.

As can be seen from the above example, the Standards document is very important in at least setting goals that centres should try to achieve. Some of the Standards are more important than others and some are based on much stronger evidence. The comparative audit produced by the Registry, for the first time allows renal units to see how they compare with other centres, even for the Standards which have proved very difficult to achieve.

• Data Protection Act - No data are published about individual patients, only for groups of patients in each centre. The Registry is registered under the Data Protection Act. National planning of renal services by the Department of Health and allocation local renal resources relies on the returns of total patient numbers provided by the Registry to regional purchasers. Accurate take-on rates for regions, and centre survival statistics can only be produced if all patients agree to allow their data to be included in the Registry.
• Security and privacy - The Renal Registry does not release individual patient data to any external body. Transmission of data to the Registry from the renal unit, is protected by the latest secure encryption technology (1024 bit encryption).

Contacting the Registry

If you want to ask the Registry any questions, mail through the website. The Registry will not tell you the code number of your unit, or any analysis of data beyond that which is already on the website.

NKF Controlled Document No. 181, How is Your Renal Unit doing?, written 20 August 2002.

The National Kidney Federation cannot accept responsibility for information provided. The above is for guidance only. Patients are advised to seek further information from their own doctor.

The National Kidney Federation is registered in England and Wales as a Company limited by guarantee (Company No 5272349) and awarded charitable status (Charity Number 1106735). Give as You Earn contributions No. CAF GY511. Registered Office:- The Point Coach Road Shireoaks Worksop Notts S81 8BW	Tel: Fax: Helpline: E-mail:	(01909) 544999 (01909) 481723 (0845) 601 02 09

Page created: 20 August 2002

Last updated: 16 August 2007

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