A study looking at a needs assessment tool for adolescents and young adults with a brain or spinal cord tumour (YOU-CAN)
Cancer type:
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This study is looking at using a questionnaire to assess the unmet needs of adolescents and young people who have a brain or spinal cord tumour.
The study is open to people who have a 
of the brain or spinal cord who:
- are going to the Christie Hospital, Manchester and
- have finished treatment at least 6 months ago
More about this trial
At the moment, there is no standard way to assess the needs of adolescents and young adults with a brain or spinal cord tumour. Researchers have developed a questionnaire called YOU-CAN that looks at the needs of this group of people.
YOU-CAN is a short online questionnaire that asks about your needs and . The researchers want to find out how easy it is to use YOU-CAN and how it might change the clinical care.
To do this, they will ask you to use YOU-CAN before an appointment with your doctor. During the appointment your doctor will discuss the issues that you have identified in YOU-CAN.
Sometimes people coming to the clinic do not feel able to complete questionnaires and ask someone else to complete it for them. Because of this, the researchers want to understand if someone else is able to complete the questionnaire on your behalf. To do this, they will ask you to give another copy of the questionnaire to someone close to you such as your parent, partner or friend.
The person close to you is called your proxy in this study. The team will ask your proxy to answer the YOU-CAN questions, as if they are doing this on your behalf. They will then compare their answers to the answers you gave to see how accurately someone else can report the issues that are important to you.
The aims of the study are to find out:
- the experience you, your doctor and someone close to you have when using YOU-CAN
- how accurate someone else can complete YOU-CAN on your behalf
- more about the unmet needs and quality of life of adolescents and young people with a brain or spinal tumour
- why people might choose not to complete YOU-CAN
- what is good about using YOU-CAN and if it improves your clinical care
Who can enter
The following bullet points are a summary of the entry conditions for this study. Talk to your doctor or the study team if you are unsure about any of these. They will be able to advise you.
Who can take part
You may be able to join this study if all of the following apply. You:
- have a primary tumour of the brain or spinal cord that was diagnosed at any age before your 39th birthday. You can also join if your tumour has come back.
- have finished treatment at least 6 months ago
- are able to give
informed consent and complete the questionnaires - are now between 16 and 39 years old
Trial design
The team need about 100 adolescents and young people with a of the brain or spinal cord to take part.
About 7 days before your next appointment a message is sent to your mobile phone. In the message, there is a link to MyChristie-MyHealth. If you have not used MyChristie-MyHealth before you will need to create a password. A reminder will be sent 3 days before your appointment.
There are 2 questionnaires to fill in:
- the YOU-CAN questionnaire
- a quality of life questionnaire
It should take about 10 to 15 minutes to do the questionnaires. You don’t have to complete the questionnaires if you don’t want to.
If you do complete the questionnaires, your doctor will discuss the answers with you at the appointment.
The study team would like to know your opinion about YOU-CAN and why you did or did not complete the YOU-CAN questionnaire. They will do this in 2 ways.
The first is a short paper questionnaire that you fill in after your appointment with the doctor. You can complete it before you go, or you can take it home to complete. The team will give you a pre paid envelope to return it. It will take 5 to 10 minutes to complete the questionnaire.
The second way is an interview. The team will invite 20 people to take part. They will arrange a time to call you that is convenient for you. The interview will take between 30 and 45 minutes. The team will record the interview.
Someone who knows you well
The researchers would also like someone who knows you well to complete the YOU-CAN questionnaire. This can be someone such as your partner, carer, friend or parent (a proxy). They are to complete it on your behalf, as if you were not able to complete it yourself. The team would also like the proxy to complete another questionnaire about their quality of life as a carer. This is called the adult carer quality of life questionnaire. The team will give you a pre paid envelope to give to your proxy, so they can return the questionnaire.
The questionnaire will take about 20 minutes to complete.
The team would also like to interview some of these people and ask for their thoughts on the YOU-CAN questionnaire and whether it is helpful. If they are interested, they can give their contact details when they return the completed questionnaires. The team will contact them to arrange a time that is convenient to call. The interview will take about 20 to 40 minutes and will be recorded.
Hospital visits
There are no extra hospital visits if you take part in the study.
Side effects
YOU-CAN covers a wide range of issues. Answering the questions may make you feel uncomfortable or upset.
You can take your time to complete the questionnaire.
If you take part in the interviews and feel upset during it, you can ask to pause or stop. The interviewer will be aware that people might get upset and will support you if you do. You can have someone else with you during the interview to offer support. The interviewers are very experienced in managing sensitive conversations and your wellbeing is the main priority.
If you would like, the interviewer can arrange with your healthcare team for you to meet a professional who you can talk to about your feelings.
Location
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.
Chief Investigator
Dr Kate Law
Supported by
The Christie NHS Foundation Trust
The Christie Charity
If you have questions about the trial please contact our cancer information nurses
Freephone 0808 800 4040
