Brain tumour clinical trial title
PROMOTE – Patient Reported Outcome Measures Online to Enhance Communication and Quality of Life (Study ID: 32866)
Brain tumour type
Paediatric,
Website
www.southampton.ac.uk/medicine/research/promote-study.page
Description:
Is it feasible to ask children with brain tumours, and their parents, about their health, well-being, and concerns, online and then discuss this information with clinicians during routine appointments in outpatient clinics with the aim of enhancing child-clinician-parent communication, the child's quality of life (QoL), and to improve follow-up treatment plans? The QoL of these children is often impaired and not assessed early. Systematic feedback of patient reports into patient care is beneficial and now easier with computer assistance but the processes linking feedback to patient benefit are complex. This three year study, funded by the Brain Tumour Charity (BTC), 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. In the development phase of the study, we will recruit 18-20 families with children aged 5-17 years treated for a brain tumour and also clinicians from three Children's Cancer Treatment Centres (Nottingham, Great Ormond Street, and Southampton) and using qualitative methods ask them which questions should be included in an assessment of QoL using the online platform KLIK (https://www.youtube.com/watch?v=4A2vF0k2-jM#t=32). We will then develop KLIK and in the feasibility phase of the study, pilot it with another 45 families across the three hospitals to see which aspects of the system work well and what the barriers are to the implementation of the platform in clinical practice. Families and clinicians will work with us in a collaborative way to gradually refine the system to develop a high fidelity feedback intervention that could be scaled up and rolled out across the UK in a subsequent project.
Date added:
12th January 2019
Open/Closed:
Open
Trial ends:
September 2019
Provider
University of Southampton
Contact details