A study looking at quality of life for people who had treatment for a medulloblastoma as a child or young person

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

Status:

Closed

Phase:

Other

This is a study to learn more about the experiences of people who had radiotherapy treatment for a type of brain tumour called a medulloblastoma. Medulloblastoma is a type of brain tumour called a primitive neuroectodermal tumour (PNET).

The researchers are asking children and young people who had radiotherapy treatment when they were between 1 and 25 years of age to take part. If a child is very young their parents may also be asked to join and answer questions on their behalf. We use the term 'you' in this summary, but of course if you are a parent of a child with cancer, we are referring to your child.

Doctors usually treat medulloblastoma in children and young adults with a combination of surgery, chemotherapy and radiotherapy. These treatments can have long term side effects. For example the treatment may affect how a child or young person remembers or understands things. This can have an impact on everyday life.

This study aims to find out more about the effects of a particular type of radiotherapy treatment for medulloblastoma called photon therapy. You will not have any direct benefit from taking part in this study. But if doctors can gain a better understanding of the impact of treatment, they may be able to find ways of reducing side effects in the future and improving the quality of life Open a glossary item of children and young adults in this situation.

Who can enter

Your consultant or specialist nurse may ask you to take part in this study if all the following apply

You were between 1 and 25 years old when you had photon therapy (a type of radiotherapy treatment) for a medulloblastoma at the Royal Marsden Hospital
You had treatment in the last 10 years (you will not be able to take part if you have only finished treatment in the last 3 months)
You are able and willing to fill in a questionnaire

You cannot join this study if any of these apply

Your medulloblastoma has come back, or is continuing to grow and is getting worse
You have any other serious medical condition or mental health problem that the study team think could affect you taking part

Trial design

The researchers need about 50 people to join this study. A specialist nurse will ask everyone to fill in a questionnaire.

Depending on your age and level of understanding, you may fill in the questionnaire on your own, or with the help of your parent or guardian. If a child is under 6 years old, the parents will fill in the questionnaire on behalf of their child.

The questionnaire will ask you about treatment side effects and how these affect you physically, emotionally and socially. It will ask you various questions about your life at home, school or work. You are asked to tick a box to show how you think you are doing in different areas of your life.

The researchers will also look at your medical records to get information about any side effects or problems you may have. For example, if you have problems with your hearing or sight.

The researchers will treat everything you tell them confidentiality Open a glossary item , so no one will be able to link the results to you.

Hospital visits

Where possible, you fill in the questionnaire while attending a routine follow up appointment. If you no longer have regular follow up appointments at the Royal Marsden Hospital, you may receive the questionnaire in the post.

The questionnaire takes about 10 to 15 minutes to fill in. Once this is complete, your involvement in this study has finished. If you are interested, your specialist nurse or doctor can provide you with a copy of the results when they are available.

Side effects

This study does not involve a treatment and so there are no side effects. Filling in the questionnaire may be upsetting. Your doctor will do all they can to support you, they can arrange counselling services if you would like this.