A study looking at a service to help people with a brain tumour prepare for discussions with their doctor

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





This study is looking at a way of helping patients discuss their concerns with their doctor. It is for people who have just had brain tumour surgery.

After surgery, you have an appointment (a consultation) with your specialist to discuss the results of surgery and plans for any further treatment.

We know from research that in certain situations, people can find it helpful to plan in advance for this type of consultation. In this study, the researchers want to see if it would help people who have a brain tumour.

If you agree to take part, you will see a ‘Patient Information Navigator’. This is someone who can discuss your concerns with you. They can help you to think about what you want to know and prepare questions that you can ask your doctor.

The aims of the study are to find out if preparing for a consultation in this way helps people to

  • Feel more involved in decision making
  • Have a better understanding of the information their doctor gives them

The researchers also want to see if people find it helpful to have a summary of their consultation.

Who can enter

You may be asked to join this study if you

  • Have just had brain tumour surgery
  • Are at least 18 years old and speak English

Trial design

The study will recruit about 25 people in Edinburgh. After surgery, you see a member of the team called a Patient Information Navigator before your next consultation with your specialist. They help you to prepare a list of questions that you want to ask.

With your permission, your Navigator will go to the consultation with you. They will note down the answers to your questions, as well as any other important information the doctor gives you. They will put this into a written summary which they give to you after the consultation. They also put a copy of the summary in your medical notes and ask your permission to send a copy to your GP.

The Navigator will ask your permission to make an audio recording of the consultation which they will give to you.

Your Navigator will be able to help with planning and summarising 2 more consultations over the next few months. If you would like a relative or carer to be involved, they can be. They will have to sign a consent form Open a glossary item.

The researchers will ask you to take part in 3 interviews over 6 months. During the interviews, they will ask about your experience of the consultations. They will also ask you to fill in a questionnaire asking what you think of the Patient Information Navigation Service.

Hospital visits

Planning for a consultation will take about an hour each time. The interviews will take about half an hour. Both the planning and the interviews can take place at hospital or by phone.

Side effects

There are no side effects from taking part in this study.

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

Dr Belinda Hacking
Sarah Shepherd

Supported by

Coventry University
Macmillan Cancer Support
NHS Lothian
NIHR Clinical Research Network: Cancer

Questions about cancer? Contact our information nurses

Freephone 0808 800 4040

Last review date

CRUK internal database number:

Oracle 7995

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

Rhys was only four years old when he was diagnosed with a brain tumour

A picture of Rhys

"He went through six operations and was placed on a clinical trial so he could try new treatments.”

Last reviewed:

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