People being treated with dialysis after kidney failure should be offered a choice over where and what type of treatment they have, according to new recommendations from the National Institute for Health and Care Excellence (NICE).
The new guidance recommends that patients, in discussion with their clinician, should be able to choose which type of dialysis is right for them and where they can have their treatment.
Around 29,000 people are given dialysis treatment each year to remove waste products and excess fluid from the blood when the kidneys stop working properly. There are three types of dialysis which are offered on the NHS depending on local arrangements and which is right for the patient:
Peritoneal dialysis (PD) takes places at home. It involves pumping dialysis fluid into the space inside your abdomen to draw out waste products from the blood passing through vessels lining the inside of the abdomen.
Haemodialysis (HD) and haemodiafiltration (HDF) can take place at home or in hospital. Both involve diverting blood into an external machine, where it's filtered before being returned to the body.
After deciding which type of dialysis is right for them, the patient in consultation with their clinician, should be able to decide whether their treatment takes place at home or in hospital. This will also depend on local arrangements.
The independent NICE committee agreed clinicians should consider offering haemodiafiltration (HDF) in the first instance to patients who opt for treatment in hospital.
Dr Jan Dudley, consultant paediatric nephrologist at the Bristol Royal Hospital for Children and NICE committee chair, said: “Deciding which type of dialysis to have and in what setting may have quite different effects on a person’s life. It may affect their ability to travel, for example. So we agreed a person should be able to choose the type of dialysis most suitable for them.
“We also said a person should be able to choose where they had their dialysis – either at home or in hospital – because at present there is no evidence to suggest clear differences between either settings.”
Paul Chrisp, director for the centre for guidelines at NICE, said: “It is right patients get to choose what type of dialysis they want and where they want the treatment to take place. The committee agreed what might be right for one patient may not be for another and each individual should make the right choice for them alongside advice from their clinician.
“Dialysis is a time consuming procedure. Allowing a patient to decide where and when they have their treatment will allow them to lead the life they want.”
NICE clinical guidelines are not mandatory but are considered best practice.
Other recommendations in the guideline include offering information, education and support to enable people, and their families and carers, to make informed decisions while offering balanced and accurate information about all treatments available to them and how the treatments may affect their lives.
The committee also agreed that patients with a BMI of more than 30 should not automatically be precluded from being offered a kidney transplant – which continues to happen in some centres.
Approximately 5,500 adults and children are currently on the national renal transplant waiting list according to NHS Blood and Transplant, with about 3,000 kidney transplants performed each year. The median time to transplantation for those on the list is around 1,000 days for adults and 300 days for children.
Director of communications for Kidney Research UK, Peter Storey, said: “We wholeheartedly support the right of patients to make decisions about their care. Kidney failure and the need to have dialysis can be an overwhelming prospect, which is why we recently invested in a study to understand how patients reach treatment decisions and how we could empower them further in this process.
“Our study led to the Dialysis Decision Aid booklet being created by the Yorkshire Dialysis Decision Aid research team in 2015. This is used by renal nurses across the UK who want to help their patients choose the form of dialysis that is most suitable for their needs. The booklet can be downloaded from our website or ordered over the phone.”
In June 2015 NICE approved the updated and revised booklet as part of their ‘endorsed resources’ initiative.
Professor Hilary Bekker, Chair in Medical Decision Making at Leeds University who led the study commented: “The Yorkshire Dialysis Decision Aid research team is delighted that the latest NICE guidance will help kidney staff proactively support patients and their families to make informed decisions between renal replacement therapies and conservative management options. We found patients using the Dialysis Decision Aid booklet had better knowledge about their chronic kidney disease, awareness of the dialysis options, reasoning about which option suited their life and that kidney professionals could use the decision aid within usual pre-dialysis education programmes.
“Using the Dialysis Decision Aid is likely to enable kidney professionals meet these new recommendations more effectively.”
The Dialysis Decision Aid booklet can be downloaded or requested by calling 0300 303 1100.
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