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

QOL-19. The PROMOTE study: Patient reported outcome measures online to enhance communication and quality of life after childhood brain tumour
QOL-19. The PROMOTE study: Patient reported outcome measures online to enhance communication and quality of life after childhood brain tumour
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.
1522-8517
i61
Bull, Kim
751f8b25-29ba-4d4f-96e2-6c339a83a47f
Darlington, Anne-Sophie
472fcfc9-160b-4344-8113-8dd8760ff962
Grootenhuis, Martha A.
a2fbe577-d81b-41d1-86f5-d7c0beab16dd
Hargrave, Darren R.
ffb8f016-db32-44c7-9c66-f05b84431164
Liossi, Christina
fd401ad6-581a-4a31-a60b-f8671ffd3558
Morris, Christopher
a5dc6cdc-49e0-4fbb-92e0-7f57811c5dc4
Walker, David
305b146b-bd74-4aec-9dfc-030439b07105
Kennedy, Colin
7c3aff62-0a86-4b44-b7d7-4bc01f23ec93
Bull, Kim
751f8b25-29ba-4d4f-96e2-6c339a83a47f
Darlington, Anne-Sophie
472fcfc9-160b-4344-8113-8dd8760ff962
Grootenhuis, Martha A.
a2fbe577-d81b-41d1-86f5-d7c0beab16dd
Hargrave, Darren R.
ffb8f016-db32-44c7-9c66-f05b84431164
Liossi, Christina
fd401ad6-581a-4a31-a60b-f8671ffd3558
Morris, Christopher
a5dc6cdc-49e0-4fbb-92e0-7f57811c5dc4
Walker, David
305b146b-bd74-4aec-9dfc-030439b07105
Kennedy, Colin
7c3aff62-0a86-4b44-b7d7-4bc01f23ec93

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).

Record type: Meeting abstract

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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More information

e-pub ahead of print date: 22 June 2018
Published date: June 2018

Identifiers

Local EPrints ID: 430524
URI: http://eprints.soton.ac.uk/id/eprint/430524
ISSN: 1522-8517
PURE UUID: 38417d52-b29f-4660-b6fd-eeaebee3b431
ORCID for Kim Bull: ORCID iD orcid.org/0000-0002-5541-4556
ORCID for Christina Liossi: ORCID iD orcid.org/0000-0003-0627-6377

Catalogue record

Date deposited: 03 May 2019 16:30
Last modified: 27 Jan 2020 13:41

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