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People with kidney disease described why they are reluctant to have home dialysis, in new research. Some 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.

In this study, researchers worked in partnership with people with kidney disease and their families, health and social care professionals, kidney charities and dialysis providers. Together, the team suggested ways to overcome barriers to home dialysis. Solutions included peer support from people who were themselves having dialysis and who could explain what home dialysis involves. Additional social support would sometimes be necessary.

People with advanced kidney disease may need either a kidney transplant or regular dialysis to take over the kidneys’ function (and filter waste products and excess fluid from the blood). People having dialysis in hospital need to attend 3 sessions per week, each lasting several hours. This can impact their working and social life, restrict their lifestyle and prevent travel.

Home dialysis can be more convenient, as it allows people to schedule sessions around other commitments. A separate study by the same research team found that it also provides better value in the long-term for the NHS.

However, most people choose to have hospital dialysis. Researchers wanted to explore their reasons.

Further information about chronic kidney disease and dialysis is available on the NHS website.

What’s the issue?

Healthy kidneys filter waste products and excess fluid from the blood. When kidneys fail, people need either a kidney transplant or regular dialysis to take over the kidney’s function. Dialysis can be delivered in hospital, which requires people to visit a kidney unit 3 times per week for 4-hour sessions. The alternative is to have dialysis at home.

Despite the drive within the NHS to provide services at home wherever possible, most people opt for hospital dialysis. The NHS recommends that everyone who could have home dialysis is offered it; and says that at least 20% of people on dialysis in every renal centre, should have this treatment at home. This target is not being met in many parts of the country.

Researchers wanted to understand why people choose hospital dialysis.

What’s new?

The researchers worked with people with kidney disease and their families (50 in all), plus NHS staff working in kidney units (including doctors, nurses, social workers and psychologists), representatives from independent dialysis providers, and kidney charities in Wales.

Together, the whole team discussed barriers to home dialysis. They found that people may choose to have hospital dialysis because:

  • it is often presented as the norm, and those who had delayed planning for dialysis (due to the unpredictable nature of kidney disease or not wanting to think about the future) were more likely to opt for hospital treatment; people who started on hospital dialysis were unlikely to change to home dialysis later
  • social contact during hospital dialysis was welcome
  • adaptations to their home caused concern, as did families becoming carers.

Staff may suggest hospital dialysis because of:

  • bias; they may want to monitor people more closely, and check they are following their treatment plan, or they may feel uncomfortable having difficult conversations such as advance care planning
  • lack of awareness and availability; staff may not consider service costs or the potential wider benefits of home dialysis, and they may not be fully trained in home dialysis; some regions of England may have limited capacity for home dialysis
  • perceived difficulties in setting up home dialysis, in mobilising services, and training people and their families in a timely way.

The team developed ideas about what a good kidney service would look like.

They agreed that:

  • people with kidney disease should be supported to make informed decisions, based on personalised information; discussions should happen at least 1 year before dialysis is needed and should involve peers with personal experience of home dialysis to help alleviate fears
  • social care needs could be addressed by social services; these needs include social contact, home care support and help with welfare benefits
  • training is needed for professionals and people with kidney disease; people with lived experience of home dialysis could inform programmes for both groups; people with the disease should have access to video, online and peer-to-peer materials
  • kidney charities could help join up different parts of the service (independent dialysis providers, the NHS, staff members) to ensure that dialysis at home is considered first; those with lived experience could help design more integrated health and social services.

In a separate study, the same research team also looked at the costs of home and hospital dialysis. They found that home dialysis costs the NHS between £16,000 and £23,000 per person per year. Hospital dialysis is more expensive, and costs between £20,000 and £24,000 per person per year. With ambulance transport, it costs between £29,000 and £33,000 per year. This suggests that a move to home dialysis could save money for the NHS.

Why is this important?

People who are already having home dialysis are a valuable resource. They could work with those who are about to start dialysis, and help them think through the impact of different options on their everyday life. Kidney charities, and NHS teams that already consider home dialysis first, could share their experiences to encourage others to take this approach.

People with lived experience of kidney disease could also help to design dialysis services. This study demonstrated how, as part of a team, they helped identify resources that are available, and where additional investment may be needed.

The researchers say that people with kidney disease need better education materials. Professionals need to be more familiar with home dialysis and be ready to discuss the impact of treatment on working, family and social life.

People with more complex needs may need extra support to engage with shared decision-making. This may be because they lack confidence, live alone, are older, or live in an area of deprivation. Again, peer-to-peer support could help. Social services could help address unmet social needs, make clear what financial help is available and ensure that home dialysis does not bring an additional cost.  

What’s next?

This early study makes suggestions that could improve services. Further research is needed to explore how the NHS could implement the proposed changes. In addition, the Welsh population in this study is primarily White, and so more work is needed to explore barriers faced by people from other ethnic groups.

A move to home dialysis could save the NHS money, the cost analysis suggested. In Wales, a single clinical network is responsible for all kidney services and home dialysis is widely available. In England, services are regional, and people’s options may differ.   

Working in partnership with people with kidney disease and key stakeholders, the research team produced a new service plan. Called ‘Pathways to home’ the plan outlines the steps necessary for home dialysis to become the norm in Wales. The researchers also worked with people living with kidney disease to create a video sharing their experiences of choosing and starting home dialysis. 

The researchers say that this approach to co-production could help address service problems in other healthcare areas.

You may be interested to read

This Alert is based on: McLaughlin L, and others. Assessing the efficacy of coproduction to better understand the barriers to achieving sustainability in NHS chronic kidney services and create alternate pathways. Health Expectations 2022;25:579–606

An analysis of the costs of different kinds of dialysis: Roberts G, and others. Current costs of dialysis modalities: A comprehensive analysis within the United Kingdom. Peritoneal Dialysis International 2022: doi: 10.1177/08968608211061126

Shared decision-making in dialysis: Noyes J, and others. Understanding the low take-up of home-based dialysis through a shared decision-making lens: a qualitative study. BMJ Open 2021;11:e053937

Information from medical charities: Popham Kidney Support, Kidney Wales and Kidney Care UK

Information about how co-production can work in sustainability research: Norström AV, and others. Principles for knowledge co-production in sustainability research. Nature Sustainability 2020;3:182-190

Increasing the impact of health research through co-production of knowledge: a collection of articles proposed by the WHO Alliance for Health Policy and Systems Research and commissioned by the BMJ.

NHS England and Coalition for Personalised Care co-production model.

Further information on home haemodialysis and shared haemodialysis care (where patients participate in parts of their dialysis) from Kidney Care UK, a kidney patient support charity.

Funding:  This study is funded by the Health and Care Research Wales Research for Patient and Public Benefit Scheme.

Conflicts of Interest: The study authors declare no conflicts of interest.

Disclaimer: NIHR Alerts are not a substitute for professional medical advice. They provide information about research which is funded or supported by the NIHR. Please note that views expressed in NIHR Alerts are those of the author(s) and reviewer(s) at the time of publication. They do not necessarily reflect the views of the NHS, the NIHR or the Department of Health and Social Care.


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Comments

Study author

Previous coproduction studies have argued that they deliver better research outcomes. They help everyone involved to better understand each other. Coproduction is not just about having a chat with different people; it takes detailed planning and skilled facilitation.

Earlier interventions are needed so the systems can cope – this means early education about good health and flagging early warning signs that kidneys might not be working as well as they could. Kidney failure can be delayed, or even prevented.

Leah McLaughlin, Healthcare Scientist, School of Medical and Health Sciences, Bangor University

Patient Charity – Kidney Care UK

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. The variation in access to home dialysis therapies in different parts of the country is not good enough and we encourage all healthcare professionals to work together to improve this. Patients have told us that the cost of living pressures, especially energy costs, are currently playing a strong part in their dialysis decisions. Clearer messaging and action on the rapid and fair repayment of extra costs is needed (as does happen in Wales but not elsewhere).

A shared care approach can be a further step towards home therapies.

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

Kidney doctor

I look after a number of people who are on dialysis. Under the current model, most people receive dialysis care at hospital or satellite centres, with sessions that are largely fixed and very inflexible. This model is also unsustainable from a capacity perspective; increasing capacity usually involves building costly new units. This research will help us build a sustainable model for the future.

There is a real chance that the infrastructure needed to support shared decision-making (home training teams, community renal teams, pharmacy services, and so on) will be prioritised for funding. Ultimately this will increase the confidence of people with advanced kidney disease and help them to take on the challenge of a home therapy. This could relieve pressure on hospital-based services, as well as increasing patient autonomy and satisfaction.

James Burton, Consultant in Renal Medicine, University of Leicester

Member of the Public

I used to work as a nurse on a urological ward. This study will make not just patients, but anyone connected with people with kidney problems, more aware of how difficult it is to have dialysis, what is involved and the difficulties of having dialysis at home. It’s always good when research is co-produced.

Home dialysis is convenient. But in today’s climate, the cost of electricity has to be considered. I understand that patients using healthcare machines at home can claim a certain amount from the NHS. But I also expect that the amount will not be enough. People using dialysis machines at home may therefore prefer to have hospital dialysis.

Joyce Thackwray, Public Contributor, Bradford

Lived Experience

I have diabetes and my kidneys are monitored closely. My mother refused to go on dialysis and passed away with kidney failure. My father-in-law was diagnosed with kidney disease and was on dialysis but passed away. It is very close to my heart. People from ethnic minority communities may struggle with English, which prevents them engaging fully in decisions. They also might not have help at home which could be why they rarely consider having dialysis at home.

This research will encourage more citizens with kidney disease to understand the options available to them. If they have support, they could have dialysis at home. The findings will help more patients engage with the process when they are diagnosed.

It is great to see co-production threaded throughout the research project. This project shows clearly how patients and carers bring in lived experience which has a great impact on the findings.

Ruby Bhatti OBE, Public Contributor, Bradford

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