Pain and sensory function in childhood cancer survivors
This study focuses on understanding pain in young people aged 14-18 who have had leukaemia or lymphoma as children. Even after successful treatment, some survivors experience ongoing pain for years. We want to learn more about the different kinds of pain they have, where it is, what it feels like, and how it impacts their daily life, including their mood, sleep, and activities. By gathering this information through questionnaires and special tests for touch and temperature, we hope to find better ways to identify pain problems early and guide young people towards the most effective treatments to improve their overall health and well-being.
At a glance
What is this study about?
When children get cancer, new treatments have made a huge difference, meaning many more now survive. But it's really important to look at how these past treatments affect their health and well-being as they grow up. We know that feeling pain can really impact how someone feels and lives their life. Some young people who had cancer as children still experience pain years later.
At Great Ormond Street Hospital, young people who finished treatment for blood cancers like leukaemia or lymphoma have regular health checks. In an earlier study, we found that many of them had pain. Now, we want to look much closer at this. We want to understand exactly what kind of pain they have, where it is, what makes it better or worse, and how it affects their everyday life – things like their mood, sleep, and what activities they can do. This study aims to gather detailed information to help us better understand these pain experiences.
By learning more about the pain young cancer survivors experience and how it affects them, we hope to find better ways to spot these problems early on. Our goal is to identify which tests and questions work best for this, so they can become a regular part of care for all young people who have survived cancer. Ultimately, this will help doctors and nurses guide young people to the right treatments to ease their pain and improve their overall quality of life.
Key takeaways
- This study aims to understand pain in young cancer survivors.
- It involves one visit for surveys and gentle tests.
- Participation will help improve care for future patients.
- Your regular care will not be affected regardless of participation.
- The study is run from Great Ormond Street Hospital and is funded by the Medical Research Foundation.
Who may be eligible?
This study is looking for young people aged between 14 and 18 years old. To take part, you must have been diagnosed and treated for a type of blood cancer (like leukaemia or lymphoma) when you were a child.
You also need to be attending the special 'Late Effects Clinic' at Great Ormond Street Hospital, which provides ongoing support and check-ups for young people who have had cancer.
Unfortunately, you wouldn't be able to join if you have significant difficulty understanding spoken instructions or if English language skills would make it hard to complete the tests. Also, if you have a condition called chronic Graft vs. Host Disease (GVHD), this study might not be right for you, as it could make understanding your pain more complicated for this study.
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 14 and 18 years old?
- Did you have leukaemia or lymphoma as a child?
- Do you attend the Great Ormond Street Hospital Late Effects Clinic?
- Can you understand and speak English well enough for instructions and questionnaires?
- Do you NOT have a condition called chronic Graft vs. Host Disease (GVHD)?
- Do you NOT have significant difficulty understanding things that would make school-level tasks hard?
What does participation involve?
If you decide to take part, your family will receive some written information about the study before your scheduled clinic appointment. You can then choose whether to talk to the research team or not. If you are interested, you'll meet with the researchers to learn more and ask any questions.
If you agree to participate, you'll have one visit that will take about 1 hour and 30 minutes to 2 hours. This visit will be arranged at a time that suits you. During this visit, you'll be asked to describe your pain (where it is, how strong, what it feels like). You'll also fill out some questionnaires about your pain, how you're feeling, your sleep, and your activities. There will also be some gentle tests to measure how sensitive you are to touch, temperature, and pressure on your hands, feet, and any other painful areas. Finally, you'll complete some fun thinking games on an iPad to see how well your brain is working. There are no medications involved in this study.
Potential risks and benefits
Locations (2)
- Great Ormond Street Hospital for ChildrenApproximateLondon, United Kingdom
- UCL Great Ormond Street Institute of Child HealthCity onlyLondon, United Kingdom
Common questions
What is the main goal of this study?
To understand pain in young people who had childhood cancer, so we can improve their care and well-being in the future.
Who can take part?
Young people aged 14 to 18 who were treated for blood cancer as children and attend the Late Effects Clinic at Great Ormond Street Hospital.
What will I have to do if I join?
You'll have one visit (90-120 minutes) where you'll answer questions about your pain, fill out questionnaires, have gentle touch tests, and do some iPad games.
Will I get any medicine?
No, this study does not involve any medication.
How long will the study run for?
The study will be recruiting participants starting in April 2025 and will run for 3 years.
How to find out more
Natasa Ganea
Always speak to your GP or specialist before deciding to take part in a study.
Discussion
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