The National Institute for Health and Social Care (NICE) has updated its guidance for the care of people with CKD. There is a lot of detail in the full guidelines but we have selected some points which we think will be of interest to you, as people with or at risk of kidney disease, but our selection is not comprehensive.
As NICE says, CKD does not usually have symptoms at an early stage, but it is detectable, and tests for CKD are simple and easily available. This new guidance gives more specific recommendations to doctors about how to test and when to test, about keeping a good record of when to have repeat tests and taking time to explain it to patients. There is evidence that early treatment can prevent or delay the progression of CKD as well as reducing or preventing the development of complications, such as cardiovascular disease. It can also reduce the risk of death and save the NHS money. However, CKD is often unrecognised or only diagnosed at an advanced stage. Research shows that early identification is highly beneficial and there is clear evidence on the groups that are most at risk and should be targeted in preventative and early identification programmes. Kidney Care UK believes that increased effort to identify and treat people with kidney disease early is vital and people with the condition have the right to clear information and choices about their treatment options.
Kidney Care UK were pleased to see a number of our suggestions incorporated into the new guideline for CKD, particularly around sharing and documenting information with patients. Communication and shared decision making have been identified as problematic areas within the annual Patient Reported Experience of Kidney Care (PREM) in the UK for some years and we hope NICE’s revised recommendations for written information on frequency of monitoring and documented care plans will help to address this. Living with a complex condition like kidney disease can be very challenging and clear communication with patients that helps them to understand the care and support they can expect is vital. The inclusion of our recommendation of better communication about the side effects of phosphate binders is also welcome. Many people with kidney disease have problems with these drugs and it’s important that people are offered an alternative where possible – better information will support people to raise problems with their doctors rather than putting up with unpleasant side effects.
The following areas of the guideline have been updated:
- investigations for CKD
- classification of CKD
- frequency of monitoring for CKD
- blood pressure control for people with CKD
- phosphate binders to manage mineral and bone disorder in CKD
- glomerular filtration rate for diagnosing anaemia associated with CKD
- intravenous iron for treating anaemia associated with CKD
Risk assessment, referral criteria and shared care
The new guidance says that adults with CKD and their family members or carers should be given information about their 5-year risk of needing renal replacement therapy. This should be done using every day language and with time to ask questions and the opportunity for a follow-up discussion. We think that this is a such an important conversation that you might want to take a family member with you, write down your questions in advance and ask for a second appointment to go through it all.
Use of ethnicity to estimate kidney function
Kidney function is tested using a blood and urine sample, which estimates how well the kidneys work, based on the amount of creatinine (a waste product) in your system. This gives the estimated Glomerular Filtration Rate (eGFR) which is roughly equivalent to a person’s kidney function. eGFR is adjusted for your height, weight and gender. Previously, for people of black ethnicity, the kidney function estimate was also based on ethnicity, which may have meant that their kidney function was over-estimated. The adjustment for ethnicity was made because some older clinical trials suggested that people who self-identify as Black/African American can have, on average, higher levels of creatinine in their blood. It was thought this was due to differences in muscle mass, diet, and the way the kidneys eliminate creatinine. However, medical colleagues in the UK have been concerned that making adjustments in eGFR for everyone who is of black ethnicity does not reflect the wide diversity within individuals who are of course all of different sizes. Kidney Care UK believes that this change in recommendations is an important step forward in renal patient care.
Following feedback, including from Kidney Care UK, NICE has removed this old recommendation and instead recommends that everyone’s kidney function estimate, regardless of ethnicity, should be based on the individual and their muscle mass, unless or until further research shows something different. Not all laboratories have been making adjustments based on ethnicity so some of you will see no change. For some of you with CKD this could mean that you need a more accurate test to work out exactly what your kidney function is – your doctor would explain this to you. This second test is more expensive and more detailed and therefore not everyone has or needs it. Kidney Care UK is drawing up an information leaflet to explain this change in more detail.
Access to new medications
There is a new class of drugs emerging, which were developed to treat people with diabetes but are now showing benefit in slowing down CKD for people with diabetes and CKD. Some of them have names ending in ‘…flozin’, such as canagliflozin and dapagliflozin. The new guidance describes how some of these drugs (in line with their current marketing authorisations) will be available for adults with type 2 diabetes and CKD in conjunction with blood pressure medications. There are some restrictions e.g. this is only for those with a high level of proteinuria. There is a further review of the evidence for these drugs which may result in more guidance and increased availability for people with CKD later this year. There are 2 new potassium reducing drugs which will now be made available to people either to treat a life-threatening level of potassium or for people at CKD stage 3-5 with a potassium level of 6.0 or above but not on dialysis.
Due to some serious patient safety incidents NICE has decided to recommend that iron infusions should only be given with medical supervision. This will affect you if you are on home therapies and you’ll need to talk to your kidney team about how you will get iron in future.
Summary of our comments and responses from NICE:
Our comment: We have concerns about the use of the word nephrotoxic without further context and the anxiety this may engender in kidney patients who are prescribed
Response from NICE: Thank you for your comment. The term ‘nephrotoxic’ has been replaced by ‘medicines which can adversely affect kidney function’.
Our comment: We would like to see the addition of a recommendation that the agreed frequency of monitoring is documented and written confirmation is provided to patients, to support patient understanding and involvement of their own care.
Response from NICE: Thank you for your comment. We added a link to the NICE’s guideline on patient experience in adult NHS services and the NICE’s guideline on shared decision making which recommends to give written information to the patient.
Our comment: We suggest that the statement is amended to recommend that the care plan should be documented, the patient’s understanding of it confirmed, and the patient should be provided with a copy.
Response from NICE: Thank you for your comment. The recommendation has been amended to state that the care plan should be documented and dated.
Our comment: We hear from many patients that have problems with phosphate binders and welcome the recommendation to consider switching to the next recommended one. However, there is a risk that patients may not raise these problems with their care team because they are unaware of the side effects are linked to the phosphate binders or may not realise many people cannot tolerate the initial binder prescribed and alternatives are available. Patients may feel they have to tolerate these problems. We would recommend that patients are informed of side effects and when and how to raise problems with the phosphate binder prescribed and that is explained to them that alternatives are available. Thank you for your comment
Response from NICE: Recommendation 1.11.6 has been amended to include your suggestions.
Amjid Ali - Janazah (funeral) prayer announc…
Kidney Care UK Partner, BAME Engagement and Inclusion Lead Amjid Ali passed away at the weekend