This is a plain English summary of an original research article. The views expressed are those of the author(s) and reviewer(s) at the time of publication.
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.
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.
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.
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 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.
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.