"I am glad that taking part in a trial might help others on their own cancer journey.”
A study looking at helping children with cancer of the brain or spinal cord cope after treatment
Please note - this trial is no longer recruiting patients. We hope to add results when they are available.
This study is looking at helping children with a cancer of the brain or spinal cord cope with daily living after treatment.
The study is open to children and young people between 2 and 16 years of age. We use the term ‘you’ in this summary, but of course if you are a parent, we are referring to your child.
More about this trial
Doctors treat cancer of the brain or spinal cord with surgery, radiotherapy, chemotherapy or a combination of these. All treatments have side effects that can affect your daily living and
After your diagnosis of cancer (or during your treatment), you may see an
In this study, the Occupational Therapist will use their skills to help you in the first 2 years after your diagnosis or when your treatment is nearly completed and long term follow up begins. The researchers hope that the OT can assist you in hospital, at home and school in a way that is acceptable and helpful.
The main aim of this study is to find out if it is possible for the OT to do the required assessment, come up with a plan of action to help you and find out how well it works. Another aim is to see if it is possible to find a standard way of doing this.
Who can enter
You may be able to join this study if you are going to The Royal Manchester Children’s Hospital or The Royal Liverpool Hospital and you
There are 2 groups in this study.
To join the 1st group you must have been diagnosed recently and are going to have one of the following treatments (or a combination of them)
Surgery Radiotherapy Chemotherapy
To join the 2nd group you must be within 3 months of finishing 1 to 1½ years of chemotherapy.
This is a feasibility study. The researchers need 60 children and young people to join.
The Occupation Therapist (OT) will see everyone and assess them. You fill in a number of questionnaires when you see them and again after 3 months and 6 months. The questionnaires will ask about any side effects, how you are feeling, how you are coping at school and about your health in general. In total it will take about an hour to do.
Between these appointments the OT will phone you or your parents every 4 weeks. They will offer any help they are able to.
The researchers would also like you, your parents and if appropriate your brothers and sisters, to tell them your views about the study. They will invite you all to an interview. This will take about 30 minutes to 45 minutes. They will make an audio recording of the interview.
If you wish, you can also write a diary, do a video diary, send text messages, blog or use facebook, twitter or wiki. Whichever you feel comfortable with.
The researchers would also like to know how you are doing at school. For this they would like to have a talk to one of your teachers. They will ask your permission before approaching your teacher.
All the information that the team gather is confidential and anonymous. No one will be able identify you, your parents or anyone else who has taken part in this study.
You see the Occupational Therapist when you agree to take part in the study. You see them again after 3 months and 6 months. Where possible these visits will be on the same day as your routine clinic appointments.
You may get a bit upset when talking about your cancer and treatment. If this happens, the researchers will offer all the necessary support through your medical team.
How to join a clinical trial
Please note: In order to join a trial you will need to discuss it with your doctor, unless otherwise specified.
Professor Tony Long
NIHR Clinical Research Network: Cancer
NIHR Research for Patient Benefit (RfPB) Programme