BRAIN TUMOURS
The PROMOTE Study: Patient Reported Outcome Measures Online To Enhance Communication and Quality of Life after childhood brain tumour
Aims
To improve the quality of life (QoL) of survivors of childhood brain tumours by asking children about their health, well-being, and concerns, and discussing this information with their doctors during routine appointments in outpatient clinics. Using this information in the consultation will help communication between the doctor and the patient and parents and improve follow-up treatment plans.
Why this research is needed
The QoL of children with brain tumours is often impaired but it is not routinely assessed. Feedback of patient reports about their mental health, well-being, and concerns into patient care is beneficial and now easier with computer assistance. Our team of researchers has extensive experience of using such reports provided by children and their parents, including directly feeding back the information into the child’s care. The processes linking feedback to patient benefit are complex. This study will focus on these processes to strengthen the links, tailor the methods of feedback to the service providing care, and thus maximise the benefits to the QoL of affected children. With the use of feedback the voices of the survivors will be heard.
Relevance to the brain tumour community
Research into ‘the effect of interventions to help carers cope with changes that occur in people with a brain or spinal cord tumour, compared with standard care’ was identified in 2015 as one of the top 10 research priorities in neuro-oncology by The James Lind Alliance, which represents patients and the public. The PROMOTE study plan was strongly supported by parent and clinician representatives in the Children’s Cancer and Leukaemia Group (CCLG.org.uk) and other Clinical Studies Groups of the UK National Cancer Research Network in 2014. It was also supported by parents attending an information day hosted by The Brain Tumour Charity (thebraintumourcharity.org) in 2015, and by The Brain Tumour Charity young ambassadors.
Contact KLIK PROMOTE study
Dr Kim Bull Ph.D. (project manager)
Senior Research Fellow
Clinical and Experimental Sciences
Faculty of Medicine
University of Southampton
MP 803G, G level, Centre Block
Southampton General Hospital, SO16 6YD, UK
Tel: ++44 (0)23 8120 3980
Fax: ++44 (0)23 8120 6420
Professor Colin Kennedy (Principal Investigator)
Professor in Neurology and Peadiatrics
Clinical and Experimental Sciences
Faculty of Medicine
University of Southampton
MP 803G, G level, Centre Block
Southampton General Hospital, SO16 6YD, UK
Tel: ++44 (0)23 8120 6678
Fax: ++44 (0)23 8120 6420