Burden of treatment in patients requiring kidney replacement therapy

  • Research type

    Research Study

  • Full title

    Exploring burden of treatment, workload-capacity imbalance and workload trajectories in patients with kidney failure requiring replacement therapy

  • IRAS ID

    322865

  • Contact name

    Catrin Jones

  • Contact email

    catrin.jones@nhs.scot

  • Sponsor organisation

    NHS Greater Glasgow and Clyde

  • Duration of Study in the UK

    1 years, 6 months, 0 days

  • Research summary

    Having kidney disease is hard work. You might experience difficult symptoms that reduce your energy levels and quality of life. There is also work that comes with the treatments needed. This can include hospital visits, complex medication routines and changes to your diet. It can involve preparing you to start kidney replacement therapy when your own kidneys no longer work well enough on their own. This is a period of time where a person with kidney disease has many important decisions to make. They need to decide with their clinical team what kind of kidney replacement therapy is the best option for them. To do this they need to understand the different options, weigh up and decide what could work for them and then have the necessary work up to be able to start when needed. The main options for kidney replacement therapy are haemodialysis, peritoneal dialysis or a kidney transplant. Dialysis is a process which removes waste products when the kidneys no longer work well enough to do this on their own. Haemodialysis is when we use a dialysis machine to remove waste products from the blood and is usually done three times a week in hospital. Peritoneal dialysis is when we use fluid inserted through a tube into the abdomen and is usually done every day at home. A kidney transplant is an operation to give you a new kidney. Some people with kidney disease need operations to create and maintain a way of connecting to dialysis machines. Some people with kidney disease also need to prepare for more than one type of kidney replacement therapy. For example, sometimes a person needs to start on dialysis while preparing and waiting for a kidney transplant. None of this happens in isolation: people with kidney disease still have roles and responsibilities to cope with on top of dealing with their kidney disease. They may have families to care for, bills to pay, jobs, friendships, and responsibilities in the community. On top of that, many people with kidney disease also have other medical conditions that come with their own symptoms and treatments to cope with.

    The ability to cope with treatments varies between people and also for one person over time depending on what else is going on in their life. Some people with kidney disease can become overwhelmed by all they have to deal with. This can have a negative effect on their care and their health. We hope to better understand which people are most at risk of becoming overwhelmed by their various treatments and at which points in their treatment journey this is most likely to happen. We are also interested in understanding what things can stop people from becoming overwhelmed. We will do this by interviewing people with kidney disease and their caregivers over the first year of needing kidney replacement therapy. The hope is that by understanding this we will be able to identify people who need extra support and put this in place early.

  • REC name

    North West - Preston Research Ethics Committee

  • REC reference

    23/NW/0267

  • Date of REC Opinion

    6 Oct 2023

  • REC opinion

    Further Information Favourable Opinion