Dialysis for kidney failure: evidence to improve care

“Having a treatment choice if your kidneys fail is a vital part of kidney care and being able to share the decision on where to and how to dialyse helps the person to feel a little more in control of their life.” Fiona Loud, Policy Director, Kidney Care UK

Dialysis at home can improve quality of life and independence, as well as offering good value for the NHS. But in 2022, an average of only 17% (1 in 6) of people in the UK had dialysis at home; this varied between 0%-34% depending on where people were treated.

NICE guidance recommends that people be offered a choice over where and what type of dialysis they have. NHS services aim to reduce the impact of cost on people’s choice. Those having home dialysis may be entitled to help with the costs of running equipment at home. Those treated in hospital or specialist units are offered help with transport costs to and from dialysis sessions.

Recent research explored why people do not choose home dialysis, and what might help. The findings could inform shared decision making between doctors and their patients.

A study involving 1,707 patients in Wales found that barriers to home dialysis include a lack of motivation and confidence in their ability to self-manage treatment, a lack of home support, and unsuitable housing. People who chose home dialysis were younger, had fewer additional conditions, were less frail and had higher quality of life scores.

Only half of those who initially chose home dialysis, went on to receive it. Researchers found this was not associated with deprivation, age, gender, hospitalisation, travel time or other factors. Reasons included that patients had already received a transplant, that they changed their mind, or had a change in family circumstances.

In another study, the same research team worked with people with kidney disease and their families (50 in all), 68 health and social care professionals, dialysis providers and kidney charities in Wales to explore barriers to home dialysis and how to overcome them.

People with kidney disease were concerned about changes to their home, or of their family becoming carers. Hospital dialysis was often presented as ‘the norm’ by healthcare professionals, and some people welcomed the regular social contact at dialysis sessions.

Suggested solutions included peer support from people who were themselves having dialysis and who could explain what home dialysis involves. The researchers say that people with kidney disease need better education materials. Professionals need to be more familiar with home dialysis and ready to discuss the impact of treatment on working, family and social life. Resources such as the Decision Aid Booklet can help people make a decision about which dialysis treatment fits best into their life.

“Whether it is storage space, costs or emotional and mental health challenges, the confidence to carry out a life-maintaining medical treatment at home needs kindness and patience. Information, education, and flexibility can really help.” Fiona Loud, Policy Director, Kidney Care UK

As part of a larger NIHR study (Inter-CEPt), other researchers examined home dialysis services through a staff survey at English kidney centres. They received 180 responses from 50 out of the 51 kidney centres.

The organisation and delivery of services varied between centres. The most supportive clinical environments had a positive organisational culture, leadership and staff attitudes. These environments were most likely to increase uptake of home dialysis, the researchers concluded.

“Kidney patients are some of the most monitored people on the planet. But unfortunately, three weekly sessions do not go evenly into seven days. For many years, specialists have believed the two-day break was a problem for patients. This work confirms that the problem is very real and should inform discussions about how to address it”. James Fotheringham, Consultant Nephrologist, Sheffield Kidney Institute

Kidney specialists have long been concerned about the possible implications of the weekly two-day break from hospital-based haemodialysis. But their concerns have not been reliably tested.

People receiving dialysis have a regular schedule of appointments. They typically receive dialysis either on Mondays/Wednesdays/Fridays, or on Tuesdays/Thursdays/Saturdays, with each session lasting about 4 hours. Even if they attend all their sessions, they have a two-day period without dialysis. Research based on data from 3.8 million sessions of dialysis, from 9,397 patients in 15 European countries, found an increase in hospital admissions and deaths associated with this break in treatment.

If patients miss a scheduled session, the serious health risks increase dramatically. The research found that it is most harmful if patients skip the first session of the weekly cycle. When that happens, they go four days without dialysis.

The stark negative impacts of missing a dialysis session suggest that healthcare professionals need to make the potential harms clear to patients who are not attending all their sessions, the researchers say. It also emphasises the need for research into different ways of delivering dialysis in hospitals. One approach could be overnight dialysis; the NIHR NightLife Study is examining the potential of this compared to standard, daytime care.

“I don’t feel I could just phone them up and say ‘well I’m feeling really down today and feel really bad and had enough and I just want to give up the dialysis for good’. . . They’ve not been trained for counselling and things like that, they’ve been trained for doing the dialysis.” Interviewee receiving dialysis

Kidney failure, and chronic kidney disease more generally, is associated with poor mental wellbeing. Waiting for a transplant is stressful and dialysis can make other medical conditions worse. It also has side effects such as fatigue, which can impact mood. Poor mental wellbeing is associated with worse outcomes for people with kidney disease; NICE guidance therefore recommends support groups or counselling, for example, to address the psychological aspects of coping with kidney disease.

People with kidney failure receiving dialysis are at increased risk of poor psychological outcomes compared to transplant or supportive care. Researchers wanted to understand more about mild to moderate distress in people with kidney failure to find ways to help.

First, they carried out a survey of people who were either receiving dialysis, waiting to start dialysis, or had a kidney transplant at 4 hospital Trusts in the West Midlands. 1,040 people completed the survey. Overall, 1 in 3 (33%) people with kidney failure had mild to moderate distress. This was most likely in patients on dialysis for 2 years or more (36%), and least likely among transplant patients (29%). Being younger, female, or of black and minority ethnic group increased the chance of distress. Over 40% of people reported needing support.

Next, the researchers interviewed 46 people who had taken part in the survey and had mild to moderate distress. Most were on dialysis (24 people) or waiting for dialysis (8 people); 14 had a transplant. People described their distress and how it affected their ability to manage their condition and develop coping strategies. Their experiences point to the support they need.

More education could help people prepare emotionally for their treatment. People showing signs of distress could benefit from sessions with a psychologist. Half of the hospital kidney units had an on-site psychologist, but even in these units, sessions were limited and not routinely offered to people expressing distress. Other staff members could benefit from training to recognise and respond to distress, and to help people manage their treatment.

People felt staff did not have the time to listen to them. Many said it was helpful to have someone on the kidney unit they could talk to about their distress, even when there were no solutions. Staff need to be encouraged to talk about distress as a normal part of the care they provide, the researchers say.

Some of the Trusts that took part in the study have made changes to their kidney units as a result. For example, staff in some units now ask people directly about their emotional state, rather than waiting for them to volunteer the information.

The benefits of exercise on physical and mental health are well known, but staying fit is a challenge for people on dialysis. Two trials looked at the impact of cycling during regular haemodialysis sessions, compared to usual dialysis care. One trial looked at heart health (CYCLE-HD), the other quality of life (PEDAL).

Dialysis can have long-term effects on the heart, which can get worse over time and lead to heart failure. The first trial (CYCLE-HD) looked at whether cycling for 30 minutes during dialysis could reduce these effects. 101 patients completed the trial (51 in the cycling group, 50 in the usual care group).

After 6 months, those in the cycling group showed improvements in heart health compared to those receiving usual care. Their hearts were a more ‘normal’ size and they had less stiffness of major blood vessels. These improvements could reduce people’s risk of dying from heart disease. The intervention was also value for money (cost-effective) for the NHS and should be implemented across the country as a priority, the researchers say.

Dialysis affects people’s quality of life and the second trial (PEDAL) looked at whether cycling for more than 20 minutes during treatment sessions could help. 243 patients completed assessments at the start and end of the trial (127 in the cycling group, 116 in the usual care group).

After 6 months there was no difference in quality of life between those offered cycling and those not. Less than half (47%) of those in the exercise group completed their cycling sessions. Interviews with participants revealed possible reasons, including days with  increased symptoms such as tiredness, and the impact of their other conditions. Further research looking at a more individualised approach to exercise is needed, the researchers say.

The first trial (CYCLE-HD) also examined quality of life. This was not its main outcome measurement but, in line with the findings of PEDAL, found no effect of cycling during dialysis on quality of life. They did, however, find a clear effect on heart health.

Preserved kidney function is associated with better survival and improved quality of life. Most people starting haemodialysis still have some kidney function, and it helps to maintain this for as long as possible.

Clinicians set a target weight for the end of a dialysis session to manage how much fluid is removed during haemodialysis. They need to set the target weight as accurately as possible; if it is set too low, too much fluid is removed and this may accelerate loss of remaining kidney function.

Researchers wanted to find out if bioimpedance spectroscopy, which calculates target weight independently by measuring fluid and body composition (how much water, muscle and fat, for example), could help guide clinicians.

In a recent randomised trial (BISTRO), involving 439 people from 34 dialysis centres, clinicians used a new standardised protocol to set patients’ post-dialysis target weight. For half of the patients, target weight was set by clinical judgement only. For the other half, clinicians additionally had information about target weight from bioimpedance measurements.

Using the new protocol, clinicians were as good at setting the target weight whether or not they had extra information from spectroscopy. The researchers had expected that about 25% of people would lose their kidney function after 1 year. Instead, they found that in both groups, less than 25% had lost their kidney function by 2 years. Use of the standardised protocol to avoid too much fluid loss during haemodialysis was associated with better than expected preservation of kidney function.

The researchers concluded that a standardised protocol needs to be considered the basis of routine care. There is no need to add bioimpedance to improve on clinical judgement, they say.

Haemodialysis requires reliable access to a person’s blood. Joining a vein onto an artery in the arm (an arteriovenous fistula) creates a large, robust blood vessel suitable for regular haemodialysis. However, the veins in these fistulas are prone to narrowing (stenosis).

Narrowed segments are treated with a balloon inserted into the vein, but the benefit can be short-lived. The segments often narrow again and then the fistula may block, be abandoned, or require retreatment. This is a burden for patients and costly for the NHS and has prompted a search for ways to improve treatment.

A randomised trial involving 212 patients investigated whether balloons coated in paclitaxel (a drug used to treat cancer) provided longer-lasting treatment than standard balloons, by reducing the recurrence of narrowing. 

Paclitaxel-coated balloons provided no additional benefit compared to standard balloons. There were no significant differences in any outcome, including adverse events and quality of life. However, other trials have suggested benefits, so uncertainties remain.

“This research encourages me to expand the delivery of peritoneal dialysis as part of future service provision. Solutions are needed to help clinicians and centres to develop expertise in all aspects of home dialysis.” Barny Hole, Kidney doctor in training and NIHR Academic Clinical Lecturer in the Healthcare Needs of Older People

Peritoneal dialysis involves pumping dialysis fluid through a thin tube (catheter) into the space inside a person’s abdomen (the peritoneal cavity). The catheter is inserted in the abdomen and left there permanently.

A catheter can be inserted under general anaesthetic by a surgeon, or without a general anaesthetic by a physician using a needle (medical insertion). Medical insertions have become more common in recent years due to a lack of access to surgeons and theatre space; they also have the advantage of being possible in people who are not well enough to have a general anaesthetic.

A recent study provides reassurance that medical insertions are a safe option. It included data on 769 people, who had a first abdominal catheter insertion. Just over half (58%) had surgical insertions; the others medical insertions. The main outcome was the number of safety events (catheter removal, leak, infection, and further procedures, for instance) 1 year after insertion.

Medical insertions were associated with fewer safety events (55%) than surgical insertions (63%), fewer infections (3%) than surgical infections (11%), but more catheter removals (22%) than surgical insertions (18%).

Hospitals that offered both approaches had the best outcomes. The researchers suggest this could be because it allows clinicians to decide what approach is best for the patient. They say outcomes could be improved if more hospitals were able to offer both approaches.

Clinicians could consider the advantages of each approach when discussing with a patient which is best for them.

Does preparing for dialysis or conservative care lead to better quality of life?
Prepare for Kidney Care: a randomised controlled trial of preparing for responsive management versus preparing for renal dialysis in advanced kidney disease

How do older people choose between dialysis and conservative care?
The UNPACK study: A choice experiment of older patients’ preferences for kidney failure treatments NOW PUBLISHED

Does night-time haemodialysis improve quality of life?
A randomised controlled trial assessing the effectiveness and cost effectiveness of thrice weekly, extended, in-centre nocturnal haemodialysis versus standard care using a mixed methods approach.

Do vitamin D3 supplements improve survival and quality of life in people having dialysis?
Survival Improvement with Cholecalciferol in Patients on Dialysis the SIMPLIFIED registry trial

Do larger volumes of substitution fluid during dialysis improve cardiovascular health?
The High-volume Haemodiafiltration vs High-flux Haemodialysis Registry Trial (H4RT)

Does lowering blood phosphate levels make any difference to the health of people having dialysis?
Pragmatic randomised trial of High Or Standard PHosphAte Targets in End-stage kidney disease – The PHOSPHATE trial

Which type of anaesthesia is better when creating a fistula?
Anaesthesia Choice for Creation of ArtEriovenous FiStulae (ACCESs study) A randomised controlled trial comparing clinical (one-year functional patency rate) and cost-effectiveness of regional versus local anaesthesia for primary arteriovenous fistula form

Can ultrasound help identify early problems with a fistula?
Surveillance of arteriovenous fistulae in haemodialysis