15Information needs

Publication Details

15.1. Information, education and support for people with CKD and their carers

15.1.1. Clinical introduction

People accessing NHS services need to be provided with education to allow them to understand their condition and treatment and to be involved in decisions about their care. Current NHS policy recognises the need to develop patient-led services345 and that education is of benefit to those with long term conditions, giving them skills and knowledge and ensuring they can be actively involved in planning their own care.346

This idea has been actively promoted within renal services, with the Renal National Service Framework Standard 1 stating that people with CKD should ‘have access to information that enables them and their carers to make informed decisions and encourages partnership in decision-making’.347

This policy reflects the desire of people with CKD themselves to have information and education. A study by Ormandy et al.348 concluded that people with CKD have identifiable information needs which change at different times as their condition progresses.

Information has typically been provided in the form of verbal information received face to face from health professionals in a clinical setting, or by way of written information such as leaflets provided at clinical appointments. Other ways of providing information include audio-visual methods such as CDs, videos and DVDs. Coulter et al.349 have identified that ‘where information leaflets are to be used in support of patients’ involvement in treatment decisions, they must contain relevant, research-based data in a form that is acceptable and useful to patients’. In addition, such information should be based on the needs of those who will use the information and they should be involved in developing and testing the information.

However, although information is necessary to achieve informed decision-making, it is not always sufficient on its own, even where it is of good quality. Studies show that the context in which the information is given and providing support for the decision-making process are also important.350 Therefore education programmes are being developed to ensure that people with CKD can not only access appropriate information but learn how to use it to make decisions about their own care.

What information, education, and support are needed for CKD patients and their carers to understand and cope with the diagnosis, treatment and outcome of CKD?

15.1.2. Methodology

There were no studies that examined the impact of education, information, or support on people with early (stage 1–3) CKD. There were no studies that investigated support systems for carers of people with CKD. Most educational intervention studies were conducted in people with advanced stage CKD prior to initiation of dialysis. The outcomes of interest were quality of life, compliance with medication, and preparation for ESRD therapy (timely creation for access for dialysis, hepatitis vaccinations, emotional issues surrounding initiation of dialysis, and choice of dialysis modality).

One open label RCT assessed the intent to start home-care dialysis in people with eGFR <30 ml/min/1.73 m2 randomised to standard education (N=35, education on kidney disease, dietary instruction, and different dialysis modalities) or to a 2 phase education + standard care intervention (N=35, booklets and videos discussing advantages/disadvantages of self-care dialysis, followed by a group discussion of self-care dialysis with a nephrologist and predialysis nurse).351

One retrospective Japanese cohort study assessed planned initiation of renal replacement therapy (RRT) and choice of dialysis modality in people initiating dialysis who had received predialysis education (N=70: lectures on chronic renal failure, treatment, daily-life instructions, explanations of different dialysis modalities and dietary therapy) compared with people who did not receive predialysis education (N=106: standard dialysis information was provided by the attending physician if requested by the patient).352

An American retrospective cohort study assessed timing of vascular access in people exposed to the Healthy Start Clinic education program (N=61: consisting of lectures, handbooks, and slide presentations on chronic renal failure, treatment, explanations of dialysis modalities and dietary therapy) compared with patients who did not receive the Healthy Start Clinic education program (N=86: conventional care with dialysis modality information, CKD video, meeting with a social worker in hospital).353

A Canadian cohort study examined dialysis modality choice and urgent dialysis initiation in people taking a predialysis clinic education program (N=37), compared with people receiving standard care (N=39). The clinic education program consisted of discussions with a nurse educator, physician, social worker, and nutritionist about renal function, blood pressure, bone disease, and diet therapy over multiple visits.354

A potential source of bias in all the cohort studies may be the voluntary participation in the education group, such that these participants may have already been more concerned about their health, acted to enhance their health, and thus be better prepared for dialysis initiation compared with participants who did not receive education.

The effect of predialysis education in adults with CKD is summarised in Table 15.1 at the end of the evidence statements.

Table 15.1. Effect of predialysis education in adults with CKD.

Table 15.1

Effect of predialysis education in adults with CKD.

15.1.3. Health economics methodology

There were no health economics papers found to review.

15.1.4. Evidence statements

Planned initiation of dialysis

Two cohort studies showed that significantly more people in the predialysis education group had a planned initiation of RRT compared with those who did not receive education.352,354 (Level 2+)

Choice of dialysis modality

In an RCT, significantly more people in the education + standard care group intended to start self-care dialysis compared with the standard care group.351 (Level 1+)

One cohort study showed NS differences between education and standard care groups for choice of haemodialysis.352 (Level 2+)

Two cohort studies showed NS differences between education versus standard care for choice of peritoneal dialysis.352,354 (Level 2+)

Use of catheter for dialysis

One cohort study showed that significantly fewer people in the predialysis education group used a double-lumen catheter for haemodialysis compared with those who did not receive education.352 (Level 2+)

Another cohort study showed that significantly fewer people in the predialysis education program initiated dialysis with a temporary catheter compared with people who did not participate in the education program.353 (Level 2+)

Permanent vascular access before initiation of dialysis

Significantly more people in the predialysis education program had arteriovenous fistulas placed before initiation of dialysis compared with people who did not participate in the education program.353 (Level 2+)

Permanent vascular access used for dialysis initiation

Significantly more people in the education program initiated dialysis with an arteriovenous fistula compared with people who did not participate in the program. Significantly fewer people in the predialysis education program initiated dialysis with a graft compared with people who did not participate in the education program.353 (Level 2+)

15.1.5. From evidence to recommendations

Most studies had been carried out in people with stage 5 CKD around the time they were starting renal replacement therapy; however, they were asked what information they needed at an early stage of their disease. The evidence suggested topics that should be covered but the detailed content of education packages would vary depending on the individual.

People at different stages of CKD required different information, and, for example, people with stable stage 3A or 3B CKD did not need detailed information about dialysis. However, it was agreed that it was important that people were given information about their prognosis and that they should be aware of options for dialysis access prior to having to make a decision about this.

The GDG agreed that it was not sufficient for people simply to be given information about CKD and its treatment. This information had to form part of a programme that educated them about the disease. It was agreed that it was important that after the education programme, people’s understanding should be assessed. It was also agreed that programmes should be run by clinicians who have sufficient knowledge to be able to answer people’s questions.

Older people do not always learn easily from information given on paper and some people may need psychological support to help them cope with the consequences of the information that they have been given.

A summary of research findings by Ormandy et al.348 identified key information needs of people in renal units in the UK. The GDG used these to guide making recommendations.

We have not found evidence of cost-effectiveness. We do not believe this recommendation will have a big cost impact for the NHS since this is part of the existing National Service Framework and such programmes are already widespread.



Offer people with CKD education and information tailored to the stage and cause of CKD, the associated complications and the risk of progression.


When developing information or education programmes, involve people with CKD in their development from the outset. The following topics are suggested:

  • What is CKD and how does it affect people?
  • What questions should people ask about their kidneys when they attend clinic?
  • What treatments are available for CKD, what are their advantages and disadvantages and what complications or side effects may occur as a result of treatment/medication?
  • What can people do to manage and influence their own condition?
  • In what ways could CKD and its treatment affect people’s daily life, social activities, work opportunities and financial situation, including benefits and allowances available?
  • How can people cope with and adjust to CKD and what sources of psychological support are available.
  • When appropriate, offer information about renal replacement therapy (such as the frequency and length of time of dialysis treatment sessions or exchanges and pre-emptive transplantation), and the preparation required (such as having a fistula or peritoneal catheter).
  • Conservative management may be considered where appropriate.

Offer people with CKD high quality information or education programmes at appropriate stages of their condition to allow time for them to fully understand and make informed choices about their treatment


Healthcare professionals providing information and education programmes should ensure they have specialist knowledge about CKD and the necessary skills to facilitate learning.


Healthcare professionals working with people with CKD should take account of the psychological aspects of coping with the condition and offer access to appropriate support (for example, support groups, counselling or a specialist nurse).

15.2. Available tools to aid identification and maximise effectiveness of treatment and management of CKD

15.2.1. Clinical introduction

CKD is common, usually asymptomatic, often unrecognised and as a result subject to deficiencies in appropriate management and late referral of people with advanced disease to specialist services. A number of tools have recently been introduced to help identify people with CKD and aid early intervention and appropriate management to reduce/prevent complications and progression of CKD.

In March 2006 guidelines for the identification, management and referral of adult patients with chronic kidney disease were published by the Royal College of Physicians of London on behalf of a number of collaborating agencies.15

In April 2006 a Department of Health initiative led to the automatic reporting of an isotope dilution mass spectrometry (IDMS) traceable estimated GFR using the Modification of Diet in Renal Disease Study Equation (MDRD) whenever a serum creatinine is requested through any clinical chemistry laboratory.16

In April 2004 the new General Services (GMS) contract was introduced in the UK, and part of this change included the national Quality and Outcomes Framework (QOF). Participation by practices in the QOF is voluntary, but participation rates are high possibly because there is a financial incentive to do this. In March 2006, four renal domains were included for the first time in the QOF. These indicators focused on creating a register of people with chronic kidney disease with an eGFR <60 ml/min/1.73 m2 (stage 3–5 CKD), measuring blood pressure, achieving a target blood pressure and prescription of drugs blocking the renin–angiotensin system (ACE inhibitors or ARBs).

These national tools have increased referral of people with CKD to their local specialist and in turn have resulted in a number of local initiatives aimed at providing a structured delivery of care for people with kidney disease in partnership with primary care. This section was aimed at identifying whether any of these tools had yet improved the identification and management of adults with CKD.

15.2.2. Methodology

The literature was reviewed to assess the utility of computerised tools (decision support systems and information technologies) to aid primary care workers in identifying people with CKD and in offering the most appropriate and timely treatments. Outcomes of interest were appropriate investigations and follow-up, referral, medicines management, and achieving clinical targets.

The New Opportunities for Early Renal Intervention by Computerised Assessment (NEOERICA) project used computer searching to extract a retrospective dataset of all patients with a valid serum creatinine measurement from 17 primary care practices in the UK (N=38,262 with valid serum creatinine measures).19 The aim of this study was to ascertain if computerised medical records contain sufficient information to estimate the prevalence of CKD, its comorbidities, as well as medication usage and BP targets achieved. Manual searching of medical records from 1 practice (N=492 with stages 3–5 CKD identified by computer searching) was used to test the validity of computer searching to estimate the prevalence of CKD.355 In both of these retrospective observational studies, ethnicity was unreliably reported, and the CKD prevalence estimation was limited to only stages 3 to 5 due to poor recording of proteinuria and haematuria in the medical records. Serum creatinine measurements were calibrated to the original MDRD study in Stevens et al., but not in Anandarajah et al.

Two publications from the Optimal Renal Care UK (ORC UK) study assessed the utility of a disease management programme (DMP) that was guideline- and algorithm-based to identify, manage, and appropriately refer people with CKD.356,357

In a case series study, a clinical tool to identify people at risk of rapid progression of kidney disease (≥25% decline in mean eGFR over 2 years) was developed in adults ≥66 years (mean age 76.1 years, N=6789) and validated in a second cohort of older adults (N=3395). Medications dispensed prior to the index creatinine measurements were used to determine disease categories, which were considered in a stepwise logistic regression analysis. Risk scores were calculated for each subject and then categorised into risk classes (I to V).358 Albuminuria was not included in the model and disease categories assigned based on medication may misclassify and underestimate true prevalence of a certain disease.

Another study investigated the ability of the Framingham prediction equation to predict 5 year and 10 year risk of cardiac events (myocardial infarction and fatal coronary heart disease) in people with CKD from the pooled ARIC and CHS studies (N=934).359

15.2.3. Health economics methodology

There were no health economics papers found to review.

15.2.4. Evidence statements

Computer searching of medical records

Identifying people with CKD

In the NEOERICA validation study, computer searching of medical records from one UK practice identified 492 people with stage 3–5 CKD (adjusted prevalence of stage 3–5 CKD was 5.1%). Only 36/492 (7.3%) of people identified as having CKD were known to renal services or had a renal diagnosis on their records. Manual checking of medical records identified only 4 additional cases of CKD missed by the computer search.355 (Level 3)

In the large NEOERICA study (N=38,262 with valid serum creatinine measures, 17 UK practices), computer searching identified 11,731 (30.7%) people with an eGFR <60 ml/min/1.73 m2. Only 242 (2.1%) of these were coded as a renal diagnosis in the records. The recording of a renal diagnosis improved as renal function declined.19 (Level 3)

Achieving clinical targets

The NEOERICA study showed that blood pressure targets were not achieved in most instances: only 63/461 (13.7%) of people with hypertension and eGFR <30 ml/min/1.73 m2 achieved BP <130/80 mmHg. Only 571/6235 (9.2%) people with hypertension and eGFR 45–59 ml/min/1.73 m2 achieved BP <130/80 mmHg. Only 270/1313 (20%) of people with diabetes, hypertension, and eGFR <60 ml/min/1.73 m2 achieved target BP <130/80 mmHg.19 (Level 3)

Disease management programes

Achieving clinical targets

The percentage of total cholesterol measurements in target range increased significantly after 9 months of the DMP (64.5% in target at baseline to 75% in target after 9 months, p=0.001). In people with stage 3–5 CKD without diabetes and a PCR <100, the percentage of systolic blood pressure measurements in target range increased significantly after 9 months of the DMP (37.1% in target at baseline to 53.2% in target after 9 months, p=0.001).357 (Level 3)

There were NS improvements in HDL cholesterol, LDL cholesterol, or triglyceride levels after 9 months on the DMP. In people with stage 3–5 CKD, with diabetes or a PCR >100, there were NS differences in blood pressure measurements in target range at baseline compared to after 9 months on the DMP.357 (Level 3)

Preservation of renal function

The median fall in eGFR was significantly less after 12 months on the DMP (≥0.32 ml/min/1.73 m2) compared with 9 months preceding the DMP (≥3.69 ml/min/1.73 m2, p <0.001). This was also true for people with eGFR fall ≥5 ml/min/1.73 m2 (≥9.90 ml/min/1.73 m2 prior to DMP versus ≥1.70 ml/min/1.73 m2 after the DMP, p<0.001).357 (Level 3)

Impact of eGFR reporting on nephrology referrals

Following initiation of a disease management programme (DMP), the number of referrals rose 2.7 times compared to the number of referrals prior to DMP commencement. After introduction of a referral assessment service, the referral rate decreased rapidly and by 6 months, an average of five new CKD stage 4 or 5 patients were being referred (0.16% incidence). This referral rate was within the capacity of local nephrology services.356 (Level 3)

Risk tool for predicting rapid progression of kidney dysfunction (≥25% decline in mean eGFR between the two study periods)

Multivariate analysis showed that age >75 years old, cardiac disease, diabetes, gout, and anti-emetic drug use were significantly associated with rapid progression of kidney dysfunction. In both the derivation (N=6789) and validation cohorts (N=3395), people in the Class V risk index had triple the risk of rapid renal disease progression compared with people in the Class I risk index. The c-statistic for the model was 0.59, indicating a modest ability to discriminate between people with and without risk of rapid renal disease progression.358 (Level 3)

Utility of the Framingham equation to predict cardiac events in people with CKD

The Framingham prediction equation had poor discrimination (the ability to separate those who had cardiac events from those who did not) in the CKD cohort. The Framingham equation correctly identified men with CKD who would develop a cardiac event within 10 years only 60% of the time, compared with 69% of the time in the non-CKD male cohort and 73% in the original Framingham cohort. In women with CKD, discrimination was 73% for 10-year cardiac events compared with 76% in the original Framingham cohort.359 (Level 3)

The Framingham equation under-predicted cardiac events when men with CKD were stratified into quintiles of Framingham Risk. The 5-year calibration for men was poor (chi-square 33.4, p<0.001) and the 10-year calibration was also poor (chi-square 71.3, p<0.001). The Framingham equation under-predicted cardiac events in women with CKD and had poor 5- and 10-year calibration. Recalibrated models performed better, although prediction remained poor in men with CKD. In women with CKD, re-calibration showed NS difference in predicted and observed cardiac events in 5- and 10-year probability models.359 (Level 3)

15.2.5. From evidence to recommendations

The GDG noted that the NEOERICA study had been carried out prior to the introduction of GFR reporting and prior to the inclusion of renal outcomes in the QOF. It was also prior to the introduction of appropriate Read Codes and the renal NSF. All of these factors may have subsequently improved the identification of CKD in primary care populations. Nevertheless the GDG agreed that it was still possible that people with an abnormal GFR or proteinuria were not classified as having CKD. As this information is usually recorded on practice computer databases it appears that it would be quite simple to devise programmes to identify these people.

The introduction of a disease management programme tailored to people with CKD resulted in significant improvements in blood pressure and lipid control. A significant reduction in progression of CKD also followed the introduction of the disease management programme.

The GDG were surprised that the tool for predicting rapid decline in kidney function did not include known factors such as hypertension and proteinuria in the score whilst anti-emetic use was. It was agreed that the anti-emetic use was probably a marker of the presence of an acute illness which may have affected GFR.

The GDG agreed that separate tools for the identification of people with CKD and the identification of people with CKD at risk of progressing would be useful.


There are no recommendations.