Friday, 30 May 2008

National Knowledge week for kidney diseases 9-13 June 2008

The National Library for Health (NLH) Kidney Diseases Specialist Library will hold its first National Knowledge Week from Monday 9 June to Friday 13 June 2008. As a unique resource, this Knowledge Week will provide expert opinion and evidence updates on key topics in chronic kidney disease: Proteinuria and the use of estimated glomerular filtration rate (eGFR). These will include:

● Basic science of urinary protein excretion
● Clinical aspects of proteinuria and eGFR
● Management of proteinuria and reduced GFR

The National Knowledge Week is aimed at all NHS health professionals with an interest in chronic kidney disease, and will include user-friendly summaries written by relevant experts, with links to guidelines, reviews and primary research. All information included has been subject to rigorous selection criteria.

These summaries will be freely available from Monday 9 June 2008 at the home page of the NLH Kidney Diseases Specialist Library,, no login required.

Thursday, 29 May 2008

Q & A: What has improved to see an upturn in number and success rate of transplantation?

Q: In the past, non heart beating transplantation proved less successful than normal ICU cadaver retrieval donor transplantation. What has improved in the retrieval and operation stage to see an upturn in the numbers and success rate of this type of transplantation?
submitted to Kidney Life Magazine by Patient Bob Price

A: Kidney transplants are now categorised as being from either deceased or living donors. The patient receiving the transplant kidney may be eligible for a pre-emptive transplant, which means before the need for dialysis.

A whole range of factors, including immunological and surgical, can affect the outcome of transplantation but increasingly the clinical state of the recipient and the quality of the transplanted organ are the key determinants of successful long term patient and graft survival. As a general rule a pre-emptive kidney transplant from a live donor provides the best outcomes against which to benchmark, or compare other kidney transplants.

Kidneys from potential donors, be they deceased or living, have to be working well and of high quality before they are accepted. The process of donor evaluation provides information about the structure and function of the kidneys before they are judged suitable for transplantation. Matching to the recipient blood group and tissue type is also necessary to avoid acute rejection and to reduce the number and dose of drugs the recipient will need to take long term to dampen down his or her immune system.

When kidneys are donated by living donors or heart-beating deceased donors who have been pronounced brain dead, the kidneys are still being perfused (receiving oxygenated blood and nutrients from the circulation) when the operation to remove the kidney is commenced. In this situation it is possible to cool the kidneys immediately they are removed from the donor’s body. Cooling slows down the metabolism of the kidney greatly which reduces the damage that would otherwise occur between the operation to remove the kidney and re-implantation of the organ into the recipient kidney patient.

In contrast when kidneys are donated by non heart beating deceased donors, the circulation (the heart) is allowed to stop before the operation to remove the organs begins. The kidneys are therefore exposed to ‘warm ischaemia’ (a period of time at body temperature without a working blood supply - which if prolonged can damage the organs). Prior to around the year 2000, most non heart beating donors were uncontrolled; by that I mean they were identified and retrieval of the organs was performed in the accident and emergency department in a great rush. The retrieval team had to get to the casualty department as soon as possible after a cardiac arrest to obtain consent, do the necessary preparation and proceed as quickly as possible, to do the surgery. As a result the amount of time the kidneys were left at 37°C (body temperature), without perfusion and oxygenation was as long as 45mins or 60minutes after the cardiac arrest of the donor.

Nowadays most non heart beating donations occur in a controlled setting from an intensive care unit. Usually the donor is ventilated until treatment is withdrawn. Treatment withdrawal is co-ordinated with the retrieval team such that the operation to remove the kidneys and other organs can occur immediately the heart stops. As a result warm ischaemic times have now been reduced to between 5 and 15 minutes and that makes a great difference to the long term viability of the kidney and consequently the long term outcome for the person receiving the donor organ. In addition we all know more about preservation solutions, the new perfusion machines look very promising and we have better immunosuppression. Nowadays the graft survival of non heart beating donor kidneys, heart beating donor kidneys and live donor kidneys are very similar and all very good.

The latest UK Transplant report provides information on the source (living or deceased donor - and if deceased, non heart beating or heart beating) of donor kidneys. The report is written in clear user-friendly fashion and is available on It shows that in 2007 there were 1440 deceased donor kidney transplants. Of the 765 deceased kidney donors, 609 were heart beating donors and 156 were non heart beating kidney donors. Most deceased donors provide two kidneys for transplantation. The number of heart beating donors has remained steady over the past ten years despite big efforts to increase donations. In contrast, the establishment of non heart beating donor programmes has increased the number of these donors by 28% in last year alone. In 2007 there were 690 living donor kidney transplants. Again we have seen a steady increase in live donor transplants following the introduction of specific live donor co-ordinators and the wider availability of laparoscopic surgery for the donors. The outcome of all three forms of kidney donation is now excellent. It is now clear that 5 year survival figures for non heart beating donor kidneys are as good as cadaveric transplantation from heart beating donors.

For the individual with kidney disease the major factor determining outcome is getting onto the Transplant Waiting List in a timely fashion. Standard 2 of the renal NSF - the one that emphasises the need for time to prepare and make choices for kidney replacement therapy - states that people with advanced kidney disease should be put on the National Transplant list within 6 months of their anticipated dialysis start date, if clinically appropriate - That’s typically when the estimated GFR or % kidney function, falls below 15mls per minute. Unfortunately delays still occur in transplant listing - many people spend months or even years on dialysis before transplant Listing.

IF YOU THINK YOU MIGHT BE SUITABLE FOR A KIDNEY TRANSPLANT YOU SHOULD DISCUSS THAT WITH YOUR CONSULTANT AND NAMED NURSE- You cannot be transplanted if you are not on the Transplant List! Following the publication of “Organs for Transplants” by the Department Of Health earlier this year, we do aim to increase the number of donor organs available by over 50% in the next 5 years We may need to go even further to achieve the goal of every person with advanced kidney disease having an optimal outcome - which for many would be to receive a pre-emptive transplant.

All these factors need to be borne in mind when tailoring treatment to the specific needs of the individual patient and in assessing the overall performance and outcomes of kidney transplant programmes.

Wednesday, 21 May 2008

Proteinuria is confirmed in the QOF

Many people were disappointed that the original chronic kidney disease domain of the Quality and Outcomes Framework, published in early 2006, did not have proteinuria as a key indicator. In particular, the advice that all people with CKD regardless of their level of urinary protein should be treated with ACE inhibitors or angiotensin receptor blockers was at variance with the UK CKD guidelines.

The way the subsection of the QOF domains is arranged - so that each indicator has a number - has also caused a little bit of confusion. The original CKD domain the QOF had four indicators - CKD 1, CKD 2, CKD 3 and CKD 4. They have no relationship to the stages of CKD but, in reality, I think the confusion has been more in secretary care who are less familiar with the QOF than general practitioners and other primary care and community colleagues. The old CKD 4 has now been replaced by CKD 5 : The percentage of patients on the CKD register with hypertension and proteinuria who are treated with an angiotensin converting enzyme inhibitor (ACE) or angiotensin receptor blocker (ARB) (unless a contraindication or side effects are recorded).

But what is proteinuria? Should we be using albumin as the marker for CKD? The draft NICE Guideline on CKD suggested that all people at risk of or with CKD should have a laboratory measured albumin creatinine ratio rather than relay on sticks alone. This has caused a lot of debate and discussion in the kidney community, primary care and laboratory circles. The classic kidney literature is based on proteinuria - often in the old currency of grams of protein per day. Some have questioned how relevant this literature is to the majority of patients we are now picking up with the move to detect asymptomatic kidney disease, often resulting from or linked with vascular injury. Levels of proteinuria are usually considerably less than in those with primary glomerular disease.

Many have also argued that a single standardised measurement in primary care would make sense and albumin creatinine ratios or albumin excretion rates are universally adopted for diabetic kidney disease. However, albumin based assays are more expensive than protein based assays - certainly in terms of re agents. The draft NICE Guidance provides a helpful discussion and an economic analysis.

Where a wide range of opinions are held one often finds the evidence base is lacking and I think this is true when it comes to the proteinuria versus albuminuria debate - so clear need for research, but until the research has been done it will be important to give clear direction and "speak the same language" between primary and secondary care and across the country. The final NICE CKD Guidelines should provide that clarity.

Kidney Care 18 Week Pathways Live

The 18 week pathways are up and running. If you haven't checked them out, have a look at the website for the 18 week pathways.

Rob Lusardi (Assistant Director, West Midlands Specialised Commissioning Group) is now working with Neil Grogan (Deputy Divisional Manager), Mr Andy Reddy (Consultant Clinical Lead for Transplantation), Dr Graham Lipkin (Clinical Lead for Haemodialysis) all at University Hospital Birmingham and Alison Priestley (Renal Service Manager, Salford Royal Hospital) to define the dataset for the regular performance reports we expect to be produced by each Trust.

In general nephrology the definitive "treatment" - the clock stopper, will be provision of a careplan integrated with cardiovascular risk reduction given to the patient. Janet Hegarty (Consultant Renal Physician) from my own unit at Salford Royal Hospital is helping lead a project to help design care plan templates for each stage of the kidney care pathway - but more about that in a later blog. The 18 week pathway should therefore help us acheive Standard ONE of the Renal NSF.

STANDARD ONE - All children, young people and adults with chronic kidney disease are to have access to information that enables them with their carers to make informed decisions and encourages partnership in decision-making, with an agreed care plan that supports them in managing their condition to achieve the best possible quality of life.

It also covers primary care assessment, and management. It identifies the "care bundle" required for early CKD management.

The clocks for vascular access formation, transplant listing and the live donor pathway are additional levers with which we can improve the experience and outcomes of people with more advanced kidney disease.

If you are a clinician reading this why not download a copy of the kidney pathway FAQs - it will help you in clinic when you are completing the form.

Monday, 19 May 2008

Will GPs look after our patients?

On a recent visit to the John Walls Renal Unit in Leicester to speak to the East Midlands Renal Network, Jonathan Barratt (Consultant Renal Physician) took me to task on this question. Jonathan wondered what guarantees were in place that would ensure high quality of care for people with kidney disease when they are discharged back from specialist kidney clinics to local primary care community services. A couple of days later Nancy Tannahill (Conservative Management Nurse Specialist, Liverpool) made the same point and we discussed if the inclusion of chronic kidney disease in the Quality and Outcomes Framework (QOF) in the General Medical Services contract for primary care might provide a way to audit the care of people with CKD.

Inclusion of a CKD domain in the QOF in 2006 transformed the profile of kidney disease in primary care – it’s gone from none existent in awareness to being one of the hottest primary care topics. QOF provides incentives for structured care – registration , recall and review, control of blood pressure and blockade of the rennin angiotensin system. QOF data is reported as practice level information and therefore does not tell us in detail about the quality of care for individuals. However , we do know, from first year data, that there is great variability in the detection and registration of kidney disease between practices - a 50 fold difference at most primary care trusts! Overall only about 35% of the expected number of people with kidney disease were registered in the first year. A cause for concern? Or cause for celebration? Well, neither, but it would be a very “glass half empty” person who didn’t acknowledge that it was achieved from a standing start. So let’s give credit where it’s due. Rather than concern - wringing our hands and sighing – the variability demands action. From whom? Strategic Health Authorities and PCTs have statutory responsibilities for the healthcare provision of their populations. The specialist renal community, that is the providers and our specialised commissioning colleagues, also in my opinion, have responsibilities across the whole pathway. That responsibility is not to provide every aspect of kidney care from our renal units, but rather to work in partnership, and influence the system in which people with or at risk from kidney disease are managed. That pathway extends from public health measures, through risk assessment and management, shared primary/secondary protocols from moderate and advanced kidney disease and effective patient centred care for those approaching renal replacement therapy or electing for supportive and palliative care.

Back to the questions and comments of Nancy and Jonathan – we can’t guarantee that every practice will offer the quality of care we would wish for our relatives or ourselves. As an aside, one can ask what guarantees can be given that every patient under the care of specialist kidney units gets that high level quality of care - people crash land from our own clinics, not everyone starts haemodialysis via an AV fistula and it takes up to 3 years on dialysis for everyone who is going to be transplant listed to be placed on the list. So what are we to do for our patients and the population for which we and our units provide services and are part of the system of care? Well, we have the opportunity to use the visibility of kidney disease to begin a conversation with GPs and practice nurses. Clinical Directors, with PCTs and Commissioners, should be discussing how early and non progressive CKD can be managed and, as required by the NSF, all people with kidney disease should be provided with an individual care plan so that they, their family members and the whole team (primary, secondary and tertiary, social and medical care) know what has been agreed to optimise the individuals’ experience of care and outcome.

Over the next year the kidney care, our quality improvement team, will be working hard to provide tools and local support to primary and specialist kidney care so that people with kidney care requirements can feel more confident that high a quality service is being provided, whatever the care setting in which it is delivered. These tools will support the NICE CKD guideline implementation, include national care plans that can be adopted for local use and applied to the needs of the individual and web based knowledge management support.
I would like to know details of what you might be doing locally and also of local difficulties and ideas for improvement on the important issue of how primary and secondary care can work together as a team in providing better outcomes for those with kidney disease.

Email me at donal.o' with your solutions, caveats and ideas. My job and the role of kidney care is to help individual practitioners and services to provide better kidney care.