Peer-reviewed article
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)
Bull K, Stubley S, Kouzoupi N, Darlington A, Grootenhuis M et al. ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This study developed and tested KLIK-UK, an online platform to systematically measure health-related quality of life in children receiving outpatient care for brain tumours at three UK hospitals. Researchers worked with 57 families and 10 clinicians to identify appropriate questionnaires and understand communication needs during hospital visits. While clinicians saw value in the tool, concerns were raised about fitting it into busy clinic schedules. The platform is ready for use but will need to be adapted to local hospital resources and preferences.
Key points
- Children with childhood brain tumours have significantly reduced quality of life into adulthood but this is not routinely measured in UK hospitals
- The PedsQL-Core questionnaire module was the preferred patient-reported outcome measure chosen by families
- All clinicians recognised potential value of KLIK-UK but raised concerns about whether they could use it within current appointment time constraints
- The study identified specific communication barriers and opportunities that need addressing for the platform to work in practice
- KLIK-UK requires adaptation based on local resources, needs and preferences before wider implementation
Limitations
The document provides limited detail on the interview analysis findings from the feasibility phase, which are noted as 'to be reported' elsewhere. The study does not report on actual outcomes achieved when using the platform during consultations or whether systematic assessment of quality of life led to changes in clinical care.
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 review1 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. 1Bull et al. 2019 https://doi.org/10.1093/nop/npz064
Findings the Hub has extracted
Each claim below is labelled by its type of design and links back to this report.
- Intervention
- KLIK-UK: an online platform adapted from the Dutch KLIK system that enables systematic collection of patient-reported outcome measures (PROMs) about health-related quality of life, with results displayed to clinicians during outpatient appointments
- Population
- Children aged 5–17.9 years receiving outpatient care at least 6-monthly for brain tumours diagnosed within the preceding 5 years, their parents, and clinicians at three UK children's brain tumour treatment centres
Key finding
57 families and 10 clinicians participated across three UK hospitals