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.

Cancer type:

Brain (and spinal cord) tumours
Children's cancers





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 quality of life Open a glossary item. These side effects may affect you in the long term in particular in relation to your health, schooling, friendships and future employment.

After your diagnosis of cancer (or during your treatment), you may see an Occupational Therapist  (OT) Open a glossary item. This is a professional who specialises in helping people to rehabilitate Open a glossary item after having treatment. They will make a plan to help you with everyday activities. This can include self care, gaining life skills, play, leisure and education. They will also help you develop and maintain your self esteem. But there is no standard way for the OT to do this and the resources they have available can be vary between each hospital.

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 Open a glossary item
  • Radiotherapy Open a glossary item
  • Chemotherapy Open a glossary item

To join the 2nd group you must be within 3 months of finishing 1 to 1½ years of chemotherapy.

Trial design

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.

Hospital visits

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.

Side effects

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.

Recruitment start:

Recruitment end:

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.

Please note - unless we state otherwise in the summary, you need to talk to your doctor about joining a trial.

Chief Investigator

Professor Tony Long

Supported by

NIHR Clinical Research Network: Cancer
NIHR Research for Patient Benefit (RfPB) Programme

Questions about cancer? Contact our information nurses

Freephone 0808 800 4040

Last review date

CRUK internal database number:

Oracle 12310

Please note - unless we state otherwise in the summary, you need to talk to your doctor about joining a trial.

Cara took part in a clinical trial

A picture of Cara

"I am glad that taking part in a trial might help others on their own cancer journey.”

Last reviewed:

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