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Quality of survival assessment in European childhood brain tumour trials, for children children below the age of 5 years

Quality of survival assessment in European childhood brain tumour trials, for children children below the age of 5 years
Quality of survival assessment in European childhood brain tumour trials, for children children below the age of 5 years
The highest incidence rate of childhood brain tumours is in children below the age of five years, who are particularly vulnerable to the effects of treatments. The assessment of quality of survival (QoS) in multiple domains is essential to compare the outcomes for different tumour types and treatment regimens.
The aim of this position statement is to present the domains of health and functioning to be assessed in children from birth to five years, to advance the collection of a common QoS data set in European brain tumour trials.
The QoS group of the European Society of Paediatric Oncology (SIOP-E) Brain Tumour group conducted consensus discussions over a period of six years to establish domains of QoS that should be prioritised in clinical trials involving children under 5 years.
The domains of health and functioning that were agreed to affect QoS included: medical outcomes (e.g. vision, hearing, mobility, endocrine), emotion, behaviour, adaptive behaviour, and cognitive functioning.
As for children aged five years and older, a ‘core plus’ approach is suggested in which core assessments are recommended for all clinical trials. The core component for children from birth to three years includes indirect assessment which, in this age-group, requires proxy assessment by a parent, of cognitive, emotional and behaviour variables and both direct and indirect endocrine measures. For children from four years of age direct cognitive assessment is also recommended as ‘core’. The ‘plus’ components enable the addition of assessments which can be selected by individual countries and/or by, age-, treatment-, tumour type- and tumour location- specific trials.
assessment, quality of survival, brain tumour, children, late effects
1351-5101
Limond, J.
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Thomas, S.
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Bull, K.S.
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Calaminus, G.
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Lemiere, J.
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Traunwieser, T.
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Van Santen, H.M.
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Weiler, L.
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Spoudeas, H.A.
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Chevignard, M.
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Limond, J.
dd1f37dc-5ea4-48df-83a4-71a43edfb9ab
Thomas, S.
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Bull, K.S.
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Calaminus, G.
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Lemiere, J.
b889059c-b463-48ef-8fc7-04169b15be5c
Traunwieser, T.
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Van Santen, H.M.
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Weiler, L.
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Spoudeas, H.A.
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Chevignard, M.
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Limond, J., Thomas, S., Bull, K.S., Calaminus, G., Lemiere, J., Traunwieser, T., Van Santen, H.M., Weiler, L., Spoudeas, H.A. and Chevignard, M. (2019) Quality of survival assessment in European childhood brain tumour trials, for children children below the age of 5 years. European Journal of Neurology. (doi:10.1016/j.ejpn.2019.10.002).

Record type: Article

Abstract

The highest incidence rate of childhood brain tumours is in children below the age of five years, who are particularly vulnerable to the effects of treatments. The assessment of quality of survival (QoS) in multiple domains is essential to compare the outcomes for different tumour types and treatment regimens.
The aim of this position statement is to present the domains of health and functioning to be assessed in children from birth to five years, to advance the collection of a common QoS data set in European brain tumour trials.
The QoS group of the European Society of Paediatric Oncology (SIOP-E) Brain Tumour group conducted consensus discussions over a period of six years to establish domains of QoS that should be prioritised in clinical trials involving children under 5 years.
The domains of health and functioning that were agreed to affect QoS included: medical outcomes (e.g. vision, hearing, mobility, endocrine), emotion, behaviour, adaptive behaviour, and cognitive functioning.
As for children aged five years and older, a ‘core plus’ approach is suggested in which core assessments are recommended for all clinical trials. The core component for children from birth to three years includes indirect assessment which, in this age-group, requires proxy assessment by a parent, of cognitive, emotional and behaviour variables and both direct and indirect endocrine measures. For children from four years of age direct cognitive assessment is also recommended as ‘core’. The ‘plus’ components enable the addition of assessments which can be selected by individual countries and/or by, age-, treatment-, tumour type- and tumour location- specific trials.

Text
QOS under 5 years version for resubmission 021019 - Accepted Manuscript
Restricted to Repository staff only until 25 October 2020.
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More information

Accepted/In Press date: 14 October 2019
e-pub ahead of print date: 25 October 2019
Keywords: assessment, quality of survival, brain tumour, children, late effects

Identifiers

Local EPrints ID: 435172
URI: https://eprints.soton.ac.uk/id/eprint/435172
ISSN: 1351-5101
PURE UUID: 72f3f3c2-67bf-40c0-93b2-abff6b8a1e04
ORCID for K.S. Bull: ORCID iD orcid.org/0000-0002-5541-4556

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Date deposited: 25 Oct 2019 16:30
Last modified: 06 Dec 2019 01:37

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Contributors

Author: J. Limond
Author: S. Thomas
Author: K.S. Bull ORCID iD
Author: G. Calaminus
Author: J. Lemiere
Author: T. Traunwieser
Author: H.M. Van Santen
Author: L. Weiler
Author: H.A. Spoudeas
Author: M. Chevignard

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