QOL-19. The PROMOTE study: Patient reported outcome measures online to enhance communication and quality of life after childhood brain tumour

Bull, Kim, Darlington, Anne-Sophie, Grootenhuis, Martha A., Hargrave, Darren R., Liossi, Christina, Morris, Christopher, Walker, David and Kennedy, Colin (2018) QOL-19. The PROMOTE study: Patient reported outcome measures online to enhance communication and quality of life after childhood brain tumour. Neuro-Oncology, 20 (suppl 2), i61. (doi:10.1093/neuonc/noy059.601).

Abstract

BACKGROUND: The quality of life (QoL) of children and adolescents treated for brain tumours is significantly impaired into adulthood but is not systematically screened by methods appropriate to these patients. In the UK, referral of them for appropriate support is often reactive rather than proactive. We are developing and testing KLIK, an online platform to systematically monitor QoL and psychosocial functioning using patient-reported outcome measures (PROMs) that are meaningful to affected families. This information will then be fed back to/shared with clinicians on-line during follow-up outpatient clinics. There are two phases to this study: the development phase, and the feasibility phase.
METHODS/PARTICIPANTS: Children aged 5-17.9 years, receiving outpatient care >6 monthly for a brain tumour diagnosed within preceding 5 years and their parents and clinicians.
SETTING: Three Children’s Brain Tumour Treatment Centres in the UK (SGH, Southampton, GOSH, London, and QMC, Nottingham).
PROCEDURE: (Development phase) Systematic literature review to identify relevant PROMs with promising psychometric properties; translation of KLIK into UK English; views of families on choice of PROMs and development of KLIK.
RESULTS: The PedsQL-Core module identified as the most relevant PROM; KLIK translated into English and currently undergoing development with the views of users in an iterative process. The feasibility of using the KLIK feedback process at paediatric neuro-oncology clinics in the three centres will be tested in 2018-19.
CONCLUSION: The PROMOTE study will enable the viability of a future scaled-up trial of the benefit of this feedback process across the UK to be assessed.

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Contributors

Author: Kim Bull

Author: Christina Liossi

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