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Providing joined-up care in chronic kidney disease

Chronic kidney disease can be successfully managed in both primary and secondary healthcare settings but an integrated approach is essential to ensure patients receive the best level of care.

The past few years have seen significant changes in the management of people with chronic kidney disease (CKD) in primary care, including the publication of a National Service Framework for people with kidney disease1and NICE guidance for CKD.2Although many health professionals working in primary care are now familiar with the way in which kidney disease is now monitored (the estimated glomerular filtration rate or eGFR), there are still many issues in CKD management that are causing difficulty. Practitioners still have reservations as to whether CKD is really a disease, have wondered whether the diagnosis of CKD should be based purely on two eGFR readings and have experienced problems in explaining the condition to patients without frightening them.3

Joined-up care has long been advocated as a way of meeting the needs of patients with complex conditions. Evidence from both the United Kingdom and other countries shows the benefits of integrated (joined-up) approaches to service provision, centred on the needs of patients.4Traditionally, the care of people with kidney disease has been undertaken by specialist renal practitioners, although since the introduction of eGFR in 2006, care of people with stages 1-3 CKD is now community-based. However there needs to be Vertical Integration of care,4where primary and secondary care organisations come together at different levels to deliver care for people with CKD. 

This article will explore some of the ways in which joined-up CKD care can be provided, and by doing so can overcome some of the concerns highlighted by practitioners in Crinson's (2010) study, namely identification of people who have the condition and how to explain their diagnosis to them; when to refer to secondary care, and ways in which primary and secondary care teams can work together to deliver patient-centred care.

Identifying people with CKD

The staging of CKD is now recognised internationally and is based on the Kidney Disease Outcome Quality Initiative (KDOQI) study.5 In general terms, stages 1-2 do not require specific interventions; stages 3a and 3b are managed in primary care; people with stage 4 may require referral to renal teams (this is the pre-dialysis phase) and people with stage 5 usually require some form of renal replacement therapy (dialysis or transplantation). 

However there remains a large variation in GP practices recording the prevalence of CKD. Recently published Quality and Outcomes Framework (QOF) data6show that on average 4.3% of the population have been recorded as having CKD. However there is large variation between SHAs (2.6-5.2%) and individual practices (0.6-11.5%) with the majority recording 3-4% prevalence. The actual prevalence is estimated to be around 5.5-7%.7-9

Managing the CKD Register

It is crucial to identify all those who have CKD, as people who have been identified can then be managed more effectively and in time this will reduce the number of people who are late referred to renal teams (within 3 months of needing dialysis).

The QOF data suggest that many practices might require help in identifying people who have the condition. Table 1 shows the steps that can be taken to improve the accuracy of the CKD Register in general practice.

How to explain the diagnosis of CKD

It is unfortunate that age-related decline in eGFR can be common, so it is important to note that an eGFR in the range 45-59, if stable over time and without any other evidence of kidney damage, is unlikely to progress or develop CKD-related complications.

Words used to explain this need to be chosen carefully. For example, it may be helpful to use the terms 'kidney damage' or 'reduced kidney function' rather than CKD, and to explain that kidney damage can be part of the normal ageing process. However it is also important to explain that people with Stage 3 CKD do need to be monitored and this will be carried out through an annual blood (eGFR) and urine (proteinuria) test. People with CKD Stage 3A should have their names placed on the CKD Register and should be informed as such.

Referral to secondary care

All patients with Stage 4 and 5 CKD should be considered for referral. It should be discussed with the patient and their family if they would like active treatment (dialysis or transplantation) should their kidneys fail.

Ideally renal units require one year to prepare patients and their families for dialysis as control of blood pressure, assessment of nutritional intake to ensure that people are well-nourished prior to dialysis, and control of anaemia and renal bone disease are all required in the pre-dialysis phase. The later the person starts dialysis or transplantation, the poorer the outcome in terms of mortality and morbidity rates and quality of life experienced during this period.10

The NICE CKD guideline gives further details on referral to secondary care (see Resources). A summary of indicators for referral is shown in Table 2.

Finally, patient and family wishes should always be taken into account when considering referral. It may not always be appropriate to refer people who are frail and stable in Stage 4 or 5 or thought to be in the last year of life.


Ways in which primary and secondary teams can work together in managing CKD

Email advisory services

A number of renal units now offer advice by email to ensure that referrals from primary care are timely and in the best interests of patients. One example is the service set up in South Tees where a single, memorable e-mail address has been set up that automatically forwards the message received to all consultant nephrologists in South Tees. The renal team receives around 20 enquiries a month and because much of CKD management is about interpreting blood tests and reviewing medication, the renal team can often give advice without needing to see the patient.

The initiative has been very well received by GPs as it means that patients can be managed in primary care, avoids unnecessary referral or admission, as well as allowing patients to be discharged sooner from outpatient follow-up. For the health service as a whole, the ability to offer more timely care, reduce hospital referrals and discharge patients sooner from outpatient follow-up enables a much more efficient use of NHS resources.

The NHS Kidney Care website provides more information on this service (see Resources).

 The ENABLE CKD study

An ongoing quality improvement study, managed by Kidney Research UK and funded by the Health Foundation, is working with 28 GP Practices in England and Wales. The project team, that mostly comprises practitioners from secondary care, has developed an intervention called a care bundle that is being tested in GP practices in North Wales and England. The care bundle is a novel, high-impact, evidence-based intervention that consists of four practical activities that have to be applied when people with CKD attend for clinic. Early findings have been reported.11

The NHS Institute guidance on joined-up care12has highlighted the importance of putting patients at the centre of care and provides some key questions that should be asked about patient involvement when designing a joined-up service. These are shown in Table 3.

A key part of the ENABLE project is the involvement of 'service users' (patient and carers) in an active partnership with researchers, rather than just as the 'subjects' of research. This area is increasingly gaining international recognition as being central to health care research, policy and practice. The ENABLE team has set up a formal 'user' advisory group to encourage true user involvement in the project. The group comprises individuals with kidney disease and other vascular conditions including diabetes and heart disease. The service user group is contributing to all parts of the study process: ensuring that patient experiences at the start of the study are recorded, developing patient stories for primary care practitioners, creating both practitioner (GP and practice nurse) and patient materials, undertaking training of GPs and practice nurses, and devising tools to assist with the evaluation of the study.

By end of project, the goal is to have a new CKD toolkit for use in other practices that includes a CKD Register validation tool and a patient CKD education package to encourage both self-management and collaborative working between health care professionals.


In summary, the case for joined-up care in CKD is convincing. The benefits of integrated care however hinge on collaborative working between primary and secondary care practitioners. In some parts of the UK this is still not happening, with anecdotal evidence suggesting that renal teams are finding it difficult to engage with GPs and practice nurses, whilst at the same time primary care teams report that nephrologists and renal nurses are reluctant to relinquish control of patient care despite the best interests of patients. Renal networks are playing some part in improving collaboration (see Resources for an evaluation report) but more needs to be done. As Ham (2010) suggests, other important ingredients for joined up care include “a collaborative culture that encourages team working... accountability for performance, the use of guidelines to promote best practice and reduce unwarranted variations in care, and the adoption of information technology to facilitate integration...” Whilst we already have NICE guidelines for CKD (2008), we still do not have an integrated IT system that allows patients' records to be scrutinised across the primary/secondary care interface. We can however improve the mechanisms for seamless care - whether a culture of collaboration continues to develop or not is up to us.


1.         Department of Health. National Service Framework for Renal Services:Chronic kidney disease, acute renal failure and end of life care(Part Two). London: HMSO; 2005.

2.         National Institute for Health and Clinical Excellence. Early identification and management of chronic kidney disease in adults in primary and secondary care. NICE clinical guideline 73 2008.

3.         Crinson I, Gallagher H, Thomas N, de Lusignan S. How ready is general practice to improve quality in chronic kidney disease? A diagnostic analysis. British Journal of General Practice. 2010;60:403-409.

4.         Curry N, Ham C. Clinical and service integration: the route to improved outcomes. London: King's Fund; 2010.

5.         Levey A, Coresh J, Greene T, et al. Chronic Kidney Disease Epidemiology Collaboration. Using standardized serum creatinine values in the modification of diet in renal disease study equation for estimating glomerular filtration rate Ann Internal Med. 2006;145(4):247-254.

6.         NHS Information Centre. QOF Prevalence data tables 2010/2011. Available at:

7.         Stevens PE, O'Donoghue DJ, de Lusignan S, et al. Chronic kidney disease management in the United Kingdom: NEOERICA project results. Kidney International. Jul 2007;72(1):92-99.

8.         de Lusignan S, Chan T, Gallagher H, et al. Chronic kidney disease (CKD) management in southeast England: a preliminary crosssectional report from the QICKD - Quality Improvement in Chronic Kidney Disease study. Primary Care Cardiovascular Journal. 2009;2(Special issue CKD):33-39.

9.         de Lusignan S, Tomson C, Harris K, van Vlymen J, Gallagher H. Creatinine Fluctuation Has a Greater Effect than the Formula to Estimate Glomerular Filtration Rate on the Prevalence of Chronic Kidney Disease. Nephron Clinical Practice. 2011;117(3):c213-c224.

10.        Jungers P. Late referral: loss of chance for the patient, loss of money for society. Nephrology Dialysis Transplantation. March 1, 2002 2002;17(3):371-375.

11.        Thomas N. Can care bundles reduce variability in standards in primary care? . British Journal Renal Medicine. 2011;16(1):19-22.

12.        NHS Institute for Innovation and Improvement. Joined-up care delivering seamless care: A practical guide to making change happen: NHS Institute; 2010.



Chronic kidney disease: NICE guideline

NHS Kidney Care

Kidney Research UK - ENABLE CKD