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Young adults speak out about kidney disease

08 August 2019

A hard-hitting study has revealed the stark reality of being a young UK adult on renal replacement therapy.

It highlights the many challenges faced by young people on dialysis and with a kidney transplant. And its findings have enabled the start of further research to find effective ways to improve physical and mental health and overall quality of life for this group.

The SPEAK study

The Surveying People Experiencing young Adult Kidney failure (SPEAK) study was led by Dr Alex Hamilton, a kidney doctor and lecturer at University of Bristol and Southmead Hospital, Bristol. Alex’s work was supervised by Professor Yoav Ben-Shlomo, Dr Fergus Caskey and Dr Carol Inward.

Through a Kidney Care UK grant, managed by Kidney Research UK, researchers were able to invite young adults from every renal unit in the UK to take part in an online survey.

The survey looked at many aspects of living with kidney disease including education, relationships, jobs, home life, independence, psychological health and mental wellbeing.

A total of 625 people, aged between 16 and 30, responded to the survey. Most people (71%) had received kidney transplants and the rest of the group (29%) were on dialysis.

Their information was checked against other young adult kidney patients’ data from the UK Renal Registry. It was then compared to people of the same age group in the general population, using a range of different sources, including the 2012 Health Survey for England.

Key survey findings

Speak study findings

The results revealed that young adults on renal replacement therapy:

  • Were less likely to be in a relationship and have children
  • Were more likely to live in the family home, receive no income and be unable to work due to health, despite gaining the same levels of education as the general population
  • Had poorer quality of life than young adults in general – and people on dialysis had lower quality of life ratings than those who had received kidney transplants
  • Had worse wellbeing and were twice as likely to experience mental health problems
  • Reported less smoking, alcohol and drug use, gambling and involvement in crime than young adults in general – which, although positive, could suggest that they may not experience the same ‘rites of passage’ when growing up as their friends.
speak study findings

Explaining the findings

Dr Hamilton worked with colleague Dr Pippa Bailey to review existing research into the possible reasons why quality of life might be poor in young adults on renal replacement therapy and found three main themes:

  • Living in limbo – which was described as ‘never knowing what’s around the corner in terms of health and how difficult that is to live with’
  • Having thwarted or moderated dreams or ambitions – which was described as ‘having to completely change your life goals in the face of having a chronic disease’
  • Feeling different and desiring normality – which was described as ‘being aware that you are different and wanting to not experience that’

SPEAK study aims

“We wanted to understand exactly how kidney disease is having an impact on the lives of young adults, because if we know what is happening now we can start to find ways to make things better,” says Dr Hamilton.

If we know what is happening now we can start to find ways to make things better.Dr Alex Hamilton

“One possibility could be to ensure that we routinely assess a person’s mental health as well as their physical health. We have shown that mental health problems can be linked to poor medical outcomes, such as problems with managing medications and transplant failure. But we know that mental health problems are potentially treatable so addressing this issue could lead to better outcomes for patients.

“We also saw worse outcomes for young adults on dialysis so we need to find out if improving access to treatments may help – for example, kidney transplants or different types of dialysis.”

Responses to the study

The SPEAK study has been welcomed by many people who took part in the survey.

One person tweeted: “I’m so pleased you’ve done this survey and that the impact of both dialysis and transplantation in adolescents are going to be taken seriously, and perhaps will lead to a more holistic approach in time.”

While another person, clearly impatient for change, tweeted: “It’s too late now to decide that our mental health should also be considered when being treated with Dialysis!!It also doesn’t help that your postcode determines how well you are cared for!!!!”

Next steps

Dr Hamilton is now researching other treatments and initiatives that have been used to help young adults with other chronic conditions such as Type 1 diabetes and cystic fibrosis to see if these could potentially help kidney patients.

A lot of work still needs to be done but ultimately we hope to find practical and acceptable ways to empower young adults to take ownership of their kidney disease and learn ways to cope and self-manage, rather than the disease owning them. Dr Hamilton.

Speak to someone if you need support

If you’re struggling with any mental health issues don’t wait for your next clinic appointment to speak to somebody about it. Contact your kidney unit or make an appointment to see your GP.

You can also get peer support and information about how to get involved in upcoming research studies by joining the Young Adult Kidney Group on Twitter and Facebook.

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