Not yet recruitingNAINTERVENTIONAL

Understanding Physical Activity and Quality of Life in Children and Young People with Chronic Kidney Disease

This study wants to learn more about children and young people aged 6 to 18 living with long-term kidney disease (stages 3-5). Many young people with kidney disease say that being active, school, social activities, and feeling tired are important things they want to improve. Because this is a rare condition, there isn't much research on these topics. This project will look at how active these young people are and how their illness affects their well-being, including their mood and daily life. Participants will do some physical tests, answer online surveys about their health and feelings, and have interviews to share their experiences of living with kidney disease.

At a glance

Status

Not yet recruiting

Phase

Sponsor

Queen Margaret University

Enrolment target

Start

01 Dec 2024

Estimated completion

01 Sep 2026

Chronic Kidney Disease Stages 3-5

What is this study about?

If you're a child or young person aged 6 to 18 living with long-term kidney disease, this study might be of interest to you. It's designed to understand how physical activity, daily life, and emotional well-being are connected in young people like you. We know that many young people with kidney disease want to feel better when it comes to being active, managing tiredness, and enjoying school and social activities. However, because kidney disease in young people is quite rare, there isn't much information out there to help doctors and families understand these issues fully and offer the best support.

This important project aims to fill that gap. Researchers want to find out how physically active young people with kidney disease actually are. They also want to understand how the illness affects their mood, how they feel about life in general (their quality of life), and any difficulties they might face, such as feeling tired or struggling with mental health. By understanding these parts of your life better, the study hopes to provide valuable information that can help improve the support and care available for young people with kidney disease in the future.

The study will involve a few different steps to gather a complete picture. You might be asked to take part in some gentle physical tests, complete online questionnaires about how you feel and what you do, and even have a chat with a researcher about your experiences. Your participation will help researchers learn directly from young people living with kidney disease, making sure future care is based on what truly matters to you.

Key takeaways

A study for young people aged 6-18 with kidney disease.
Aims to understand physical activity, well-being, and daily life.
Involves gentle physical tests, online surveys, and interviews.
Helps improve future support and care for young people with kidney disease.
Participation is voluntary, with no new medicines involved.

Who may be eligible?

This study is looking for children and young people between the ages of 6 and 18. You need to have long-term kidney disease, specifically stages 3 to 5, and be receiving your regular kidney care in Scotland to take part in the full study.

There are also a few other things to consider. You should be well enough to do some gentle physical exercises without any medical concerns. If you are already in another clinical trial where you don't know what treatment you are receiving, or if your doctor thinks you are currently too unwell to take part in physical activity, this study might not be right for you. Also, if you have significant problems with understanding or memory that would prevent you from understanding what’s involved and giving your clear permission, you wouldn't be able to join.

Some parts of this study, like an online survey, might also be open to young people across the wider UK through patient groups, even if you’re not in Scotland. However, the physical tests and interviews are mainly for those in Scotland.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Are you between 6 and 18 years old?
Do you have chronic kidney disease (stages 3, 4, or 5)?
Are you receiving kidney care in Scotland? (If so, you might do all parts)
Are you generally well enough for some gentle physical activity?
Are you not in another 'blinded' clinical trial at the moment?

Answer every question to see your result.

What does participation involve?

If you decide to take part, your involvement will be split into a few stages. If you are recruited in Scotland, you will take part in all three stages; if you join through patient groups in other parts of the UK, you might only do the online survey.

First, there's a visit for some physical activity tests. These are simple exercises like a 'bleep test' (running between two points), sit-ups, and a handgrip test to see how strong you are. You'll also wear a small device called an accelerometer for 7 days, which tracks your movements and how active you are. At this stage, you'll also complete the online survey.

The online survey will ask you questions about your physical activity habits, how your kidney condition affects your daily life and feelings (your quality of life), tiredness, and any strengths or difficulties you might be experiencing with your moods or behaviour. Finally, if you participated in the first stage, you'll have an interview, which can be online or in person. This is a chance to chat more openly about what it's like living with kidney disease and how it affects being active and your overall well-being. The total time you spend on the study will vary depending on which parts you take, but the physical tests and interview are one-off sessions, and the activity tracker is for 7 days. You can complete the survey at your own pace.

Potential risks and benefits

Taking part in this study could offer several benefits. By sharing your experiences, you'll be helping researchers better understand the challenges young people with kidney disease face, which could lead to improved support and care in the future. You might also gain a better understanding of your own physical activity levels and feelings. The risks are very low; the physical tests are gentle and safe, and your privacy and personal information will be protected throughout. You'll be asked to wear a movement tracker, which is harmless, and answer questions that might touch on your feelings, but you can always choose not to answer anything you're uncomfortable with. Remember, your participation is completely voluntary, and you have the right to withdraw from the study at any time, for any reason, without it affecting your usual medical care.

Locations (1)

Some site locations are approximate. We're improving this — please verify with the trial team before travelling.

Glasgow Royal Hospital for Children
Verified postcode
Glasgow, United Kingdom

Common questions

What is 'Chronic Kidney Disease Stages 3-5'?

This refers to a certain level of long-term kidney damage where your kidneys aren't working as well as they should be to clear waste from your body.

What's a 'bleep test'?

It's a common fitness test where you run between two lines, keeping pace with beeps that get faster. It's done to safely check your fitness levels.

Will I have to take any new medicines?

No, this study does not involve taking any new medications. It's about understanding your experiences and activity levels.

How long will I have to be in the study?

The study involves a few separate activities: a one-off visit for physical tests, wearing a tracker for 7 days, completing an online survey, and a one-off interview. The total duration of your active involvement will be relatively short.

Will my doctor know I'm in the study?

Participation is discussed with your medical team, and your privacy is really important. Your personal information will be kept confidential.

How to find out more

Silene ten Seldam

silenetenseldam@yahoo.co.uk +447341596914 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.