New results show Kidney BEAM physical activity digital health programme improves mental health and self-management in people living with polycystic kidney disease
The results of a sub-study of the Kidney BEAM trial led by lead researcher Juliet Briggs, and supported by Kidney Research UK and The PKD Charity, looking at the use of a polycystic kidney disease (PKD) specific education and physical activity digital health intervention, have been published in Clinical Kidney Journal.
What is PKD?
Autosomal dominant polycystic kidney disease (ADPKD) is the most common inherited type of kidney disease, affecting approximately 12.5 million people worldwide. PKD has significant unmet needs and limited treatment options. For individuals living with PKD, low levels of physical activity contribute to poor health-related quality of life (HRQoL).
About Kidney Beam
Kidney Beam is an exercise and lifestyle management app designed for kidney patients; it offers a way to improve physical activity levels from home. Registered individuals can choose from a selection of live movement or on-demand classes, including yoga, pilates, high intensity training (HIIT) and other online sessions.
The programme was developed by NHS health professionals, other qualified instructors, and people with lived experience of PKD. The classes designed are suitable for all abilities, any kidney condition, and at any stage of kidney disease.
About the PKD research
The research helps tackle a lack of evidence on what types of physical activity are safe and appropriate for people living with PKD, a topic that the late Tess Harris, previously CEO of The PKD Charity until she passed away in 2024, was a particular champion of. In line with Tess’s wishes, an integrated approach was taken, in order to combine both physical activity and condition-specific education in a supported manner.
In this study, 60 adults with PKD, from 11 UK kidney centres, were randomly assigned to either the Kidney BEAM PKD-specific educational and physical activity digital health intervention or a control group receiving usual care. After 12 weeks, researchers compared changes in measures of mental HRQoL and found important improvements in patients in the intervention group. This included better emotional wellbeing and increased energy.
Although physical function did not improve for all patients, there was an important improvement in self-management behaviour. Six of the patients involved in the study also completed interviews, reporting positive outcomes for self-management, building on new skills and knowledge and peer support.
Overall, these results show that a PKD-specific digital health intervention has the potential to support the well-being of those living with PKD.
Supporting people living with PKD
Professor Sharlene Greenwood, Co-founder and chief medical officer of Kidney BEAM, said: “Despite its benefits, there has been limited support for people living with PKD to engage in physical activity. To make sure Kidney BEAM is accessible for all UK kidney patients, we have designed a PKD-specific digital health intervention and are pleased to see initial improvements in health-related quality of life for people with this inherited condition.
"We hope to see this intervention offered to all PKD patients as part of their routine kidney care, and want to dedicate the achievement to Tess Harris, who was integral in championing and organising the study.”
The Kidney Beam trial was initially supported by a Kidney Research UK grant and currently operates in partnership with Kidney Research UK, the National Kidney Federation, the UK Kidney Association, the Irish Kidney Association and several NHS England Renal Clinical Networks.
Dr Aisling McMahon, executive director of research at Kidney Research UK said: “There is an urgent need to support the wellbeing of people living with PKD. We know that this condition affects psychological wellbeing and health-related quality of life and are delighted to see significant benefits the Kidney BEAM platform can provide. Kidney BEAM is widely available for people living with CKD in the UK and has now been proven to be of real benefit for people living with PKD too.”
Alison Taylor, CEO of PKD Charity, said: "We were delighted to support and co-fund this important study, which highlights the value of a PKD-specific exercise programme. For people living with PKD, movement can be challenging due to excessively large cystic kidneys, pain, and breathlessness. Traditional exercise advice may not always be suitable, leading to fear of kidney trauma and, ultimately, a lack of motivation.
"The Kidney BEAM PKD digital programme provides safe, tailored support, helping individuals manage their health with confidence. It’s encouraging to see early evidence that this approach can improve quality of life for those with this inherited condition, which typically impacts multiple family members across generations."
Have you been diagnosed with kidney disease?
Request your free Kidney Kit today.
You'll find tips and support from kidney patients, delicious recipes, simple exercise plans and more.
Why not make a donation now?
(Every £ counts)