QOL-33. THE PROMOTE STUDY: DEVELOPMENT AND TESTING OF KLIK-UK, AN ONLINE PLATFORM, TO ENHANCE OUTPATIENT COMMUNICATION ABOUT HEALTH-RELATED QUALITY OF LIFE (HRQOL) AT THREE UK CHILDREN'S BRAIN TUMOUR TREATMENT CENTRES (CBTTCs). (4th December 2020)

• Record Type: Journal Article
• Authors: Bull, Kim; Stubley, Shelly; Kouzoupi, Natalia; Darlington, Anne-Sophie; Grootenhuis, Martha; Hargrave, Darren; Liossi, Christina; Morris, Christopher; Walker, David; Kennedy, Colin
• Is Part Of: Neuro-oncology. Volume 22(2020)Supplement 3
• Page Start: iii437
• Page End: iii437
• Publication Date: 2020-12-04
• Subjects: Brain Neoplasms -- Periodicals; Brain -- Tumors -- Periodicals; Brain -- Cancer -- Periodicals; Nervous system -- Cancer -- Periodicals; 616.99481
• DOI: 10.1093/neuonc/noaa222.693
• Languages: English
• ISSNs: 1522-8517

Abstract

Abstract: BACKGROUND: The HRQoL of survivors of childhood brain tumour is significantly reduced into adulthood but is not systematically assessed. In the UK, referral for appropriate support is often reactive rather than proactive. We developed KLIK, the online Dutch platform, for use to enable the systematic assessment of HRQoL in the UK NHS using patient-reported outcomes measures (PROMs) which could be fed back to clinicians during outpatient review appointments. 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 UK CBTTCs – UHS, Southampton; GOSH, London; and QMC, Nottingham. PROCEDURE: KLIK-UK was developed throughout the study and barriers and opportunities for its use logged. A. Development phase: relevant PROMs were identified through systematic literature review 1 and families' views regarding choice of PROMs, communication needs within consultations, and KLIK-UK were obtained by interview. B: Feasibility phase: KLIK-UK was tested in outpatient review appointments followed by interviews with the family and clinician. RESULTS: 57 families and 10 clinicians participated. The PedsQL-Core module was preferred by families. Communication needs and barriers were identified. All clinicians reported that they could see the potential value of using KLIK-UK but views differed as to whether they could use it within their current timetable. Analysis of interviews from the feasibility phase will be reported. CONCLUSION: KLIK-UK is ready for use in the UK but will need to be adapted according to local resources, needs, and preferences. 1 Bull et al. 2019 https://doi.org/10.1093/nop/npz064