The PROMOTE Study

Quality of life in children treated for brain tumours can be significantly impaired but there is no systematic screening for problems. Referral to appropriate services is reactive rather than proactive. If problems are identified early and interventions well-timed, quality of life may improve.  We therefore aimed, in the UK, to develop and adapt an available online Dutch method (KLIK) to systematically assess health, well-being, and concerns using patient-reported outcome measures (PROMs) relevant to children treated for brain tumours and their families and feedback the information to clinicians at routine outpatient clinics.

The PROMOTE (Patient reported outcome measures to enhance communication and quality of life) study, funded by The Brain Tumour Charity  aims to achieve this goal. It is a qualitative study in three centres: Southampton General Hospital, Great Ormond Street Hospital, and Queen’s Medical Centre in Nottingham. Our informants are children 8-17.9 years in whom a brain tumour has been diagnosed within the previous 5 years, off treatment and under outpatient review more than 6 monthly, their parents (and also parents of some patients aged 5 to 7 years), and the clinicians providing their clinical care. In the first phase of the study, we have identified relevant PROMs through systematic review and interview. Six families in each centre have advised us on the acceptability and relevance of these PROMs which will be uploaded onto KLIK.  These families and clinicians have also provided feedback about the KLIK platform and method of feedback which we are refining in an iterative cyclical process of development. 

We are also currently adapting the Dutch training for clinicians in how to use KLIK and assessing the three centres for facilitators or barriers to the implementation of KLIK.  In the second half of the study, we will move on to testing the feasibility of using this refined method in outpatient clinics at the three hospitals.

Key inclusion criteria

Families fluent in the English language with children aged 5-17 years diagnosed with a brain tumour within the previous five years, off treatment but receiving outpatient care > 6 monthly and also clinicians from three Children's Cancer Treatment Centres, Queen’s Medical Centre in Nottingham, Great Ormond Street Hospital, and Southampton General Hospital.

Duration

This is a three year study with families participating either in the development phase or the feasibility phase.

Key facts

Study status: Open

Study contact: k.s.bull@southampton.ac.uk

Chief investigator: Professor Colin Kennedy

Project manager: Dr Kim Bull

Co-investigators: Dr Kim Bull, Dr Anne-Sophie Darlington, Professor Martha Grootenhuis, Dr Darren Hargrave, Professor Christina Liossi, Dr Christopher Morris, and Professor David Walker

Collaborators: Dr Hazel Everitt, Dr Anthony Michalski, Dr Ramya Ramanujachar, Dr Sophie Wilne, Mr Andy Newman

Sponsors: The Brain Tumour Charity

Did you know

• Childhood tumours mostly develop in the brain compared with other parts of the body
• Brain tumours can develop at any age
• Around 400 children develop brain tumours each year in the UK
• Slightly fewer girls develop brain tumours than boys
• About 60% of childhood brain tumours develop at the back of the brain in the area called the posterior fossa
• The main types of brain tumour are astrocytoma, ependymoma, and medulloblastoma, but there are many other types that are less common
• Brain tumours can be either non-cancerous (benign) or cancerous (malignant)
• Most children survive a brain tumour

Please visit The Children's Cancer and Leukaemia Group to find out more.