Operating framework – signals for kidney disease?

The Operating Framework sets out the agenda for the NHS and is published in the Autumn to signal the priorities for the next financial year. It is unusual for it to be revised mid-year but these are unusual times. The financial challenges remain but the political landscape has changed. Quality continues to be the watchword with patients at the heart of decision making and a new focus on outcomes. The revised Operating Framework published on 21 June 2010 sets out some important immediate changes and heralds the direction of travel for 2011/12.

Is it just change of rhetoric or a real change in priorities? Is it a response to financial pressures or something more profound? What does this mean for people with kidney disease?

The rhetoric is strong – “reward excellent performance and be tough on poor quality”; the cuts in management costs are substantial - £500M this year and next and £850M by 2013/14 and changes of both clinical emphasis and how the NHS does business are significant. Few specific disease areas are mentioned but all will be affected. Dementia is singled out as a key priority and elsewhere in the revised document the requirement to integrate social and healthcare is emphasised. Many people with advanced kidney disease could benefit if we can achieve closer and better working of our NHS and Local Authority services. The payment system will also change – it is seen as essential to supporting quality and efficiency. Payment for performance must be structured around outcomes, be capable of aggregation along patient pathways, extend across service sectors, be benchmarked for quality and costs; and incentivised for quality. To achieve this we will see the development of tariff pathways. This could drive better pre-dialysis care. Getting things right in the year before renal replacement therapy, sometimes called the golden year, is the key to better experience and improved outcomes in transplantation, dialysis and conservative kidney care.

Making hospitals responsible for a patient’s ongoing care after discharge aims to create joined up working between hospitals and community services and maybe supported by the developments in re-ablement and post discharge support. The goal is to improve quality and performance and shift focus to the outcome for the patient. How do we measure outcomes? Well here, renal services are ahead of the game with our regular clinical audit supported by the Renal Registry but the quality and completeness of our data falls short of what our patients and commissioners need to be confident about the quality of services and what clinicians need to drive further quality improvements. The NHS is not short on data, turning that into transparent information for patients, clinicians and managers is going to get more important. It is the way to understand kidney services and can provide the knowledge needed to secure better health and care for people with kidney disease.

Planning your care

“No decisions about me, without me”
Andrew Lansley, Sec of State 2010

The General Practice patient survey is now in its 4th year and the 2009/10 report makes challenging reading for those interested in care planning. Some of the elements of the patient experience of GP services have not changed since last year but the questions about care planning are new so it’s not possible to see how they compare with the 2008/09 results.

The new Government has made it clear that patients should be at the heart of the NHS, that quality remains its organising principle and that patient empowerment as much as local clinical leadership should be the driver for improvement.

The GP patient survey published last week, comes hard on the heels of Andrew Lansley’s first major speech as Secretary of State for Health and provides a baseline to gauge progress against. Half of the (over 2 million) patients surveyed had one or more long term health problems, disability or infirmity. Of these, 84% say they have had discussions with a doctor or nurse about how best to deal with their health problems. There are big differences in performances between individual GPs with 1% of practices scoring 100%. Only 1 in 10 patients felt those discussions did not help improve how they manage their conditions. Looking at that another way, combining it with the 16% who don’t seem to have been supported in this way – over 25% of people with chronic diseases have not had helpful discussions with healthcare professionals over the last year. Nine in 10 “very satisfied” people have had discussions about their health and care compared with 68% of “very dissatisfied” patients.

Overall, patients are very positive about some aspects of the discussions they have had with the doctor or nurse about how best to deal with their health problem. Nine in 10 patients say the doctor took note of their views about how to deal with their health problem and the doctor or nurse gave them information about things that they might do to deal with their illnesses. A slightly smaller proportion said they agreed with the doctor or nurse about how best to manage their health problem.

In contrast only 1 in 5 patients (19%) said that the doctor or nurse gave them a written document about the discussions they had about managing their health and care. Only 11% say the doctor or nurse told them that they had a “care plan”. When looking at how practices perform on this measure, a quarter has 15% or more of patients saying they were told they had a “care plan”; however the majority (75%) have 14% or less saying this.

Few, if any, randomised trials have looked at care plans themselves (compared with drug treatments) as instruments to improve outcomes of people with kidney disease. Yet we know that many of the risk factors for progressive kidney injury relate to lifestyle - smoking, obesity and hypertension. We also know that traditional models of care fail to achieve the behavioural modifications necessary to adequately control these risk factors. Wouldn’t it be interesting to know how many of the people with chronic kidney disease (CKD) had useful discussions with primary care health professionals; and to know what was discussed, what information was given? Identifying risk without managing it is of little or no value. Indeed, knowing about a silent condition without understanding it and without advice and support to reduce risk may in fact have more negative than positive consequences. This is an area right for further research and development.

Deaths from kidney disease

The South West Public Health Observatory (SWPHO) have produced a report on death from renal disease in England to support implementation of the national end of life care strategy. In the years 2001-2008, there were 175,917 deaths related to kidney disease. This represents approximately 5% of all deaths (3,865,264) recorded in England over the same period.

Chronic kidney disease (CKD) (94,520), acute kidney injury (AKI) (57,978) and renal cancer (25,877) were the most frequently mentioned kidney diseases. CKD and AKI have increased significantly over the period of the study. The report makes the point that if the cause of death is unrelated to the kidney condition eg death from a road traffic accident, then kidney disease isn’t recorded on the death certificate. So the number of recorded deaths related to kidney disease is not the same as the number of people dying with kidney disease. Most people with kidney disease don’t die from a road traffic accident, they mainly die from vascular events and we know from studies in Northern Ireland that even in people with quite advanced CKD (Stages 4 and 5), the kidney disease is often not mentioned in the death certificate. For example, among patients dying while receiving renal replacement therapy, only 17% had a primary cause of death coded for renal disease, 66% as a secondary code and 17% had no renal coding on the death certificate. In patients with a glomerular filtration rate of less than 15 mls min, renal disease was mentioned as the primary cause of death in only 8.5% and as a secondary cause in only a further 35%. So there is significant under recording of kidney disease on death certificates.

Nonetheless the 50% increase in deaths from CKD and the near doubling of AKI deaths should not be any cause for complacency.

We know in the general population that most people prefer to die at home. For people with renal cancer 25% died at home and another 25% died in a hospice or a nursing home. The corresponding figures for CKD are 9% and 6%; 81% of people with CKD died in hospital.

This report is the first of its kind and Julia Verne (Director, SWPHO) and her team are to be congratulated on a clear and thought provoking analysis. The next steps are:
To look in more depth at the influences on place of death for each of the main kidney diseases

• To look at the underlying causes of death where renal diseases are only mentioned as a secondary or non-contributory causes on the death certificate
• To look at the pattern of admissions and type of care received in hospital during the last year of life for those dying in and out of hospital.

Diabetes week – remember the urine and the feet

The National Diabetes Audit Annual Report for Adults and Children was published today as part of Diabetes Week which is promoted by Diabetes UK. The NDA report makes uncomfortable reading, as Douglas Smallwood (CEO at Diabetes UK) said. Only 50% of adults with Type 2 diabetes, 32% of adults with Type 1 diabetes and 5%, that’s 1 in 20, children and young people had all the 9 care processes by the National Institute for Health and Clinical Excellence (NICE) recorded. Care is improving from a low of about 10% of adults receiving all 9 care processes 6 years ago but the testing for proteinuria by measuring urinary albumin creatinine ratio is still the lowest at 68% in Type 2 diabetes and 51% in Type 1 diabetes. By contrast blood pressure measurement remains the most frequently recorded process at 96% and 89% respectively. Dr Rowan Hillson (National Clinical Director for Diabetes) commented “no urine test means no detection of micro albuminurea and missed opportunities to prevent a progressive diabetic kidney injury in turn leading to more people suffering the consequences of chronic kidney disease – premature vascular disease and development of end stage renal disease”. The NDA report says end stage renal failure has increased from 0.78% in 2003-4 to 1.27% in 2008-9; the corresponding figures for Type 2 diabetes are 0.26% and 0.48%. Some of this is likely to be due to better recording and ascertainment now that colleagues in primary care are more involved in kidney management. Looking at the Renal Registry data it looks like there’s been a 16% increased in ESRD due to diabetes over the last decade with a flat incidence rate over the last 3 years at 22 patients pmp.

There’s a real opportunity to get the NDA, which is the world’s largest such audit, and the UK Renal Registry, the only totally electronic and comprehensive ESRD audit in the world, to work together to further increase the power of both these clinical audits. The aims of both are of course to “close the loop” and help drive up improvements in care. The variance in diabetes care at GP, primary care trust and renal unit level are strong pointers that local quality improvement approaches can result in considerable benefit for people with kidney disease as a result of diabetes.

Foot ulceration is another area that recently caught my eye. Andrew Boulton (Professor of Medicine and Diabetes at the Manchester Academic Health Science Centre) with Anand Vardhan and Ashwindbhai Asari (Manchester Royal Infirmary) and other colleagues, have recently reported that dialysis is independently associated with foot ulceration. Those of us that venture onto dialysis units are well aware of the number of people with amputations and the added difficulties that causes to patients and families. The authors note “our findings have important clinical implications as they alert healthcare practitioners that dialysis is an independent risk factor for foot ulceration thus requiring extra vigilance and foot care”. They also point out that “current diabetes guidelines and recommendations fail to recognise the strength of the link between dialysis treatment and foot ulceration. Our findings suggest that in terms of foot ulcer risk, dialysis should be ranked equivalent to a history of previous foot ulceration (ie a risk category 3, [International Working Group on the Diabetic Foot] classification [risk 0 (no risk factors), risk 1 9neuropathy and no other risk factors), risk 2 (PAD with/without neuropathy), risk 3 (current foot ulcer, history of foot ulcer or amputation), and risk 4 (current foot ulcer, history of foot ulcer, or prior amputation)])”.

Diabetic kidney disease was the topic of World Kidney Day 2010 . With the 2 most powerful audits in diabetes and end stage renal failure in the world there is real opportunity for joint working in the community, in hospital and dialysis care and nationally.

Confused doctors and vulnerable patients

I came across this phrase whilst examining a PhD on quality improvement in healthcare. It was used in the context of confusing guidelines and lack of clear responsibilities in the implementation of the well established evidence base for venous thrombo embolism (VTE) prophylaxis in Australia.

The phrase “confused doctors – vulnerable patients” rang true to me for acute kidney injury (AKI) where the terminology is still poorly defined and often confusing. To compound things, many healthcare professionals are a little afraid of the kidney. Chas Newstead (Consultant Renal Physician, St James’ Leeds), recently introduced me to the term “reno phobia” meaning fear of encountering kidney disease. This may be one of the reasons a “slightly” raised serum creatinine isn’t always picked up and acted upon in the acutely unwell. Talk of fractional excretion of sodium, Henderson-Hasselbalch equation or anion gap can induce hypotension tachycardia in many who have been through medical school by surfacing deep seated, disturbing memories of undergraduate renal physiology.

The parallels between AKI and VTE run even deeper. Both are common, harmful and treatable. Both are very frequent in hospitalised patients. Both usually occur as a consequence of another underlying or superimposed illness. Both require a system-wide response focussed on assessing risk, early detection and prompt treatment. It’s just over a year since the NCEPOD report into AKI “adding insult to injury” highlighted the deficiencies in care. Only 50% received good care. In one fifth of those with hospital acquired AKI it was both predictable and avoidable. In the foreword, Tom Treasure (NCEPOD Chairman) recounts a story of a medical student presenting a case “from the hospital IT system, she had downloaded and tabulated the blood results and had devised a colour code for those falling outside the normal range. What caught my eye was a run of 3-4 days of blood results, urea and creatinine, printed in red. “Oh, that’s the weak end” she sagely remarked”.

Tom points out that despite all our technological advances and improvements in treatments and operations we are losing sight of the basics. One of the key things we must do is to demystify AKI, in its early stages it signifies the patient is sicker than might originally have been thought. Early AKI demands good basic medical care - attention to fluid balance, careful consideration of what drugs to continue and which to stop and review of management of the underlying acute problem. Senior review of all acute admissions to hospital within 12 hours should help improve the quality of care for AKI.

Treatment and care towards the end of life

For the first time, the General Medical Council has given doctors in the UK guidance on advanced care planning for patients nearing the end of life, including how to manage advanced requests and the refusals of treatment. It emphasises to doctors the importance of listening to patients and recording an advanced care plan to ensure that everyone involved in treating the patient can understand and follows their wishes.

The new guidance, “treatment and care towards the end of life: good practice in decision making”, has been developed to help clinicians with the shared decision making that can result in improved end of life treatment and provide better care to patients. The guidance stresses the vital importance of good communications between clinicians, patients and their families as well as between members of the whole healthcare team.

Jonathan Hope, a member of the patient and carer steering group and the CEO sponsor group of the modernisation initiative end of life care programme in Lambeth and Southwalk and speaker at the GMC’s End of Life Care Conference said “I have had 25 years of kidney failure and in that journey I have faced death, seen fellow patients die, observed the difference between a good and a bad death and cared for the dying. Much of the care has been exceptional, however, I believe it would be easier for us each to receive the end of life care we would like if, as doctors and patients, we were more open about dying. I welcome this guidance, which I believe will help all patients and their families have a voice in how they want to die”.

Niall Dickson, the GMC’s Chief Executive added “in the UK we have led the world in the care of patients at the end of life but we also know there is more that can be done. Every day at the front line of care doctors are having hard conversations with patients and their families and helping them to make incredibly emotional and difficult decisions. We hope this guidance will support them in providing the best quality of care and support”.

This guidance comes into force on 1 July 2010. It will be the requirement by which individual doctors are judged. It is another significant step in mainstream conservative and end of life care which is such an important aspect of kidney care, not only for all doctors but for the whole multiprofessional team.

One more reason to Quit

Smoking is associated with chronic kidney disease, presumably through its association with general vascular disease but also because smoking transiently increases blood pressure and decreases GFR. So that’s a good reason to quit but a recent article in the American Journal of Kidney Disease by Nogueira and colleagues examined the association between smoking and transplant outcomes in people receiving a living donor transplant. Both transplant and patient survival in smokers was lower than in non-smokers and transplant loss was significantly higher in current smokers. Intriguingly, the risk of acute rejection early after transplant was higher in smokers.

Over the past 25 years since I was a transplant registrar, immunosuppressive regimes have evolved and there’s been a dramatic reduction in acute rejection rates. Unfortunately, long term transplant survival has not improved to the same extent. Many factors contribute to diminished long term transplant outcomes, including chronic allograft nephropathy, recurrence of original disease, hypertension and viral infections: additionally, death with a functioning transplant due to, for instance, smoking related vascular disease should also be considered a poor transplant outcome and remains a major challenge for kidney care.

Some other studies have also found that smoking is a associated with decreased transplant survival and some have shown that in smokers there is increased fibrosis changes in the small arteries of the kidney transplant. It’s not clear how smoking increases acute rejection but that does pose several difficult management questions; for example should we intensify the early immunosuppressive regime in smokers or should we perform management biopsies early to detect sub-clinical rejection? If we intensify immunosuppressive regimes, patients may pay the price later with more infectious complications or even cancers.

There’s some good data to show better outcomes in people who quit smoking prior to transplantation and on the day that it was reported that the smoking ban in the United Kingdom led to a greater than 2% fall in heart attack rates in its first year, these reports on kidney disease and transplantation mean that we should intensify our efforts to counsel people with kidney disease about smoking and provide tangible support and encouragement for patients to enrol in smoking cessation schemes which have considerable success even in long term smokers.

Links to news items:
The BBC
The Guardian

National End of Life Care Intelligence Network (NEoLCIN)

Claire Henry (Director, National End of Life Care Programme) launched the NEoLCIN on 18 May 2010 and it is already full of fascinating data on cause of death by age, gender and different locations. It provides atlases and comparative data and aims to bring together all the available data and intelligence that we have on EoLC.

There are also a series of links to research, education and ongoing projects and this section trails “death from renal diseases in England” which is a short report focussing on the analysis of the Office for National Statistics' mortality data to give an insight into the different numbers, rates and place of death from selected renal diseases.

The NEoLCIN will publish data on when people die and what affects their care, giving commissioners and care providers a firm evidence base for the delivery of services for people at the end of their life, their families and carers.

Aging and the kidney – podocyte biology in the elderly

I had to smile. No mention of the “d” word in the supplement of this title. It also brought to mind one of Sir William Ostler’s aphorisms “the good physician treats the disease; the great physician treats the patient who has the disease”.

Seriously, it is good that basic science researchers are focussing on renal function decline because it becomes more and more important as we start to understand its increasing prevalence with aging and its impact on the global health and physical function of older individuals. We are increasingly learning more about the biology of aging, mechanisms whereby chronic inflammation potentiates kidney aging and the interaction of the various drivers for kidney injury.

The elderly often have a range of comorbidities that makes the management of advanced kidney disease and renal replacement therapy more complex than in the young with single organ dysfunction or failure. We need good science to understand where we can potentially intervene, good medicine that includes patients and their families in shared decision making so necessary for the “right choice” and a model of service delivery that is in line with the wishes and aspirations of our elderly patients with comorbidities.

It is encouraging to read the reports of kidney transplantation and successful dialysis in the elderly. Even very old patients can be treated successfully by these techniques. Multiple comorbidity and cognitive impairment can be overcome by assistance; but we shouldn’t shy away from also exploring the conservative kidney care pathway. Increasingly, many who 10 or 15 years ago, we thought had terminal renal failure will survive often with a quality of life that’s as good or better than on dialysis for one or 2 years on conservative therapy before death from vascular comorbidity. The Royal College of General Practitioners’ “End of Life Care Strategy” that complements NHS Kidney Care’s “End of Life Care in Advanced Kidney Disease – a framework for implementation” adds to our understanding of this aspect of medicine.

Consultants: a chronic problem for acutely ill patients

An editorial “Consultants: a chronic problem for acutely ill patients” in Clinical Medicine, the Journal of the Royal College of Physicians of London (Volume 10, Number 2, April 2010) by Matt Wise and Paul Frost (Consultants in intensive care medicine in Cardiff) highlights the tension between the way consultants work and the quality of care acutely unwell people receive. Matt was a clinical advisor for the National Confidential Enquiry into Patient Outcomes and Deaths report on Acute Kidney Injury: Adding Insult to Injury.

One of the key findings of Adding Insult to Injury was that nearly a quarter of patients didn’t have adequate senior review. These individuals were judged by the expert assessors to have less good care overall. The lack of consultant involvement has been a recurring message from NCEPOD, being implicated in adverse outcomes for cardiac patients, trauma patients, emergency admissions and acutely ill medical patients. Unfortunately this observation is not new. The authors of the editorial cite the latest census of consultant physicians in the UK showing that as few as 56% undertake twice daily ward rounds for acute admissions and that the majority of consultants (78%) have other duties while being responsible for acute admissions. Despite the fact that whole time consultants work in excess of the average contracted 45 hours per week. They point out that it would make no sense to an impartial observer why the sickest patient is seen by the most inexperienced clinicians first and only seen by the most experienced at the end of the admission process.

In the same issue of clinical medicine Josip Stosic (a Specialist Registrar in Acute Medicine) and colleagues from the James Paget hospital, Great Yarmouth, describe the role of the acute physician and the future of acute hospital care in the UK. This is an encouraging development. Acute physicians have been shown to be more efficient, less wasteful and speedier to respond to the needs of patients than other physicians in the hospital environment. Perhaps because they are not rostered to be doing routine activity such as outpatient clinics or endoscopy lists as well as managing the “acute take”.

“Adding insult to injury” found that the overwhelming majority of people who died of AKI were under general medicine or care of the elderly physicians. Less than 2% were initially admitted under renal physicians. Improvement in the recognition of risk for AKI, early detection and prompt management will only occur when the teams managing the acutely unwell have a better understanding of AKI. Shortly after the NCEPOD report came out one medical director said to me that AKI is really the “miner’s canary” for acute physicians. Early AKI flags that the patient is more unwell than we might otherwise believe. Improving the management of AKI will improve the management of all acutely unwell patients. It is not a matter of either improve AKI or improve, for instance, the management of chest pain. The systematic changes that will improve AKI, attention to fluid balance, early treatment of sepsis, structured medicines management and prompt senior medical review will have a beneficial effect for all acutely unwell individuals. It is not possible to improve AKI without changing the way we manage acute admissions and improvements in the management of acutely unwell can’t be delivered without also improving the care and outcomes of the 20% of acute admissions that develop AKI.

Acute physicians know this – which is very encouraging. The Society for Acute Medicine held a symposium on AKI at the start of its recent Spring meeting in Yarm near Middlesborough. Vincent Connolly, Acute Physician, James Cook University Hospital, Middlesborough and local organiser opened the meeting and set the scene using a discourse on the various names that people from the towns and cities of the North East are known by – they are not all Geordies!! The plethora of titles for citizens of this region resonates with a long list of different names we have used for AKI over the years. My title was learning from mistakes – and one of those is that the nomenclature has been a recipe for disaster! The soon to be published AKI Network definition and universal adoption of an easy to use staging system will be a big advance. David Rioch, Consultant Renal Physician of the South Tees Foundation Trust walked through a week on-call taking acute referrals – the patient with a Vancomycin level of 48.2mg/l (reference range 10-15mg/l) being one of the most remarkable. Jonathan Louden, one of Dave’s colleagues, talked about the systematic approach they are taking in detection and prevention – using automatic alerts and staff training. Alistair Douglas, a friend from our days as renal trainees in Edinburgh, although Alistair saw the light and is now an acute physician at Ninewells Hospital in Dundee, spoke about the central role of the acute healthcare team in AKI – the importance of undertaking an AKI assessment in parallel with early warning scoring, the approach, skills and levels of competency of the acute team – not only doctors but also nurses and pharmacists, Phil Dyer, Consultant Acute Physician from the Heart of Birmingham Hospital and President of SAM Chaired the lively discussion and I went away convinced that acute physicians have AKI on their “to do” list. Unfortunately I left so quickly that I missed the posters, several of which were about AKI.