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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)

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...

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Autores principales: Bull, Kim, Stubley, Shelly, Kouzoupi, Natalia, Darlington, Anne-Sophie, Grootenhuis, Martha, Hargrave, Darren, Liossi, Christina, Morris, Christopher, Walker, David, Kennedy, Colin
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Oxford University Press 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7715529/
http://dx.doi.org/10.1093/neuonc/noaa222.693
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author Bull, Kim
Stubley, Shelly
Kouzoupi, Natalia
Darlington, Anne-Sophie
Grootenhuis, Martha
Hargrave, Darren
Liossi, Christina
Morris, Christopher
Walker, David
Kennedy, Colin
author_facet Bull, Kim
Stubley, Shelly
Kouzoupi, Natalia
Darlington, Anne-Sophie
Grootenhuis, Martha
Hargrave, Darren
Liossi, Christina
Morris, Christopher
Walker, David
Kennedy, Colin
author_sort Bull, Kim
collection PubMed
description 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
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spelling pubmed-77155292020-12-09 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, Kim Stubley, Shelly Kouzoupi, Natalia Darlington, Anne-Sophie Grootenhuis, Martha Hargrave, Darren Liossi, Christina Morris, Christopher Walker, David Kennedy, Colin Neuro Oncol Neuropsychology/Quality of Life 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 Oxford University Press 2020-12-04 /pmc/articles/PMC7715529/ http://dx.doi.org/10.1093/neuonc/noaa222.693 Text en © The Author(s) 2020. Published by Oxford University Press on behalf of the Society for Neuro-Oncology. http://creativecommons.org/licenses/by-nc/4.0/ This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/licenses/by-nc/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited. For commercial re-use, please contact journals.permissions@oup.com
spellingShingle Neuropsychology/Quality of Life
Bull, Kim
Stubley, Shelly
Kouzoupi, Natalia
Darlington, Anne-Sophie
Grootenhuis, Martha
Hargrave, Darren
Liossi, Christina
Morris, Christopher
Walker, David
Kennedy, Colin
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)
title 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)
title_full 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)
title_fullStr 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)
title_full_unstemmed 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)
title_short 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)
title_sort 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)
topic Neuropsychology/Quality of Life
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7715529/
http://dx.doi.org/10.1093/neuonc/noaa222.693
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