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Quality of survival in siope brain tumour clinical trials for children aged less than 5 years: development of a clinical trial protocol

Quality of survival in siope brain tumour clinical trials for children aged less than 5 years: development of a clinical trial protocol
Quality of survival in siope brain tumour clinical trials for children aged less than 5 years: development of a clinical trial protocol
There is international recognition of the need to assess quality of survival (QoS) in children treated for brain tumours. Further to the work of the QoS working group of the European Society of Paediatric Oncology (SIOPE) Brain Tumour group and the Core ‘plus’ model of QoS assessment in clinical trials for children aged 5-18 years (Limond et al., 2015), the group has established a consensus for QoS assessment for children aged <5 years. Similar to older children, areas of assessment discussed include core medical domains (e.g. vision, hearing, mobility, endocrine), emotion, behaviour, adaptive behaviour, and cognitive functioning. Issues highlighted for this younger age group include reliability and validity of infant and young child measures, predictive value of early measures, and compatibility of measures across countries and age groups. Nevertheless the QoS group has agreed a hierarchy of neuropsychological assessments to maximise data collection to enable statistical analyses of these data in a larger number of patients than had previously been possible. As with the 5-18 year consensus, a Core ‘plus’ approach is suggested in which core assessments (direct and indirect tests) are recommended for all clinical trials. The core component is a brief screening assessment that, in most countries, is a sub-component of routine clinical provision and therefore achievable even where specific resources for QoS assessment are unavailable. The ‘plus’ component enables the addition of assessments which can be selected for tumour-, age-, and location-specific groups in order to enhance the overview of specific medical, cognitive and other relevant domains.
1522-8517
i164–i165
Limond, Jennifer A.
dd1f37dc-5ea4-48df-83a4-71a43edfb9ab
Thomas, Sophie
6701da9f-4804-4cd4-b3d1-aba420360113
Bull, Kim
751f8b25-29ba-4d4f-96e2-6c339a83a47f
Lemiere, Jurgen
b889059c-b463-48ef-8fc7-04169b15be5c
Traunwieser, Thomas
a35a5ab5-770c-420f-8006-4fb6a6de31be
Spoudeas, Helen
5def0f02-f7ad-4558-ad3e-7a226a1fca4c
Van Santen, Hanneke M.
f8622afc-ecdd-4648-bed2-644d60006fea
Weiler-Wichtl, Liesa
c63234a6-c358-4124-9b5d-2c882907e846
Lüttich, Peggy
76a5d5c9-f6f3-4e9f-8bfe-73747100cf96
Calaminus, Gabriele
3e02be07-7552-48ca-a27a-9a180acf8a2f
Chevignard, Matilde
1400245a-a205-443f-bcfd-0cf79f5a1deb
Limond, Jennifer A.
dd1f37dc-5ea4-48df-83a4-71a43edfb9ab
Thomas, Sophie
6701da9f-4804-4cd4-b3d1-aba420360113
Bull, Kim
751f8b25-29ba-4d4f-96e2-6c339a83a47f
Lemiere, Jurgen
b889059c-b463-48ef-8fc7-04169b15be5c
Traunwieser, Thomas
a35a5ab5-770c-420f-8006-4fb6a6de31be
Spoudeas, Helen
5def0f02-f7ad-4558-ad3e-7a226a1fca4c
Van Santen, Hanneke M.
f8622afc-ecdd-4648-bed2-644d60006fea
Weiler-Wichtl, Liesa
c63234a6-c358-4124-9b5d-2c882907e846
Lüttich, Peggy
76a5d5c9-f6f3-4e9f-8bfe-73747100cf96
Calaminus, Gabriele
3e02be07-7552-48ca-a27a-9a180acf8a2f
Chevignard, Matilde
1400245a-a205-443f-bcfd-0cf79f5a1deb

Limond, Jennifer A., Thomas, Sophie, Bull, Kim, Lemiere, Jurgen, Traunwieser, Thomas, Spoudeas, Helen, Van Santen, Hanneke M., Weiler-Wichtl, Liesa, Lüttich, Peggy, Calaminus, Gabriele and Chevignard, Matilde (2018) Quality of survival in siope brain tumour clinical trials for children aged less than 5 years: development of a clinical trial protocol. Neuro-Oncology, 20 (suppl_2), i164–i165. (doi:10.1093/neuonc/noy059.618).

Record type: Meeting abstract

Abstract

There is international recognition of the need to assess quality of survival (QoS) in children treated for brain tumours. Further to the work of the QoS working group of the European Society of Paediatric Oncology (SIOPE) Brain Tumour group and the Core ‘plus’ model of QoS assessment in clinical trials for children aged 5-18 years (Limond et al., 2015), the group has established a consensus for QoS assessment for children aged <5 years. Similar to older children, areas of assessment discussed include core medical domains (e.g. vision, hearing, mobility, endocrine), emotion, behaviour, adaptive behaviour, and cognitive functioning. Issues highlighted for this younger age group include reliability and validity of infant and young child measures, predictive value of early measures, and compatibility of measures across countries and age groups. Nevertheless the QoS group has agreed a hierarchy of neuropsychological assessments to maximise data collection to enable statistical analyses of these data in a larger number of patients than had previously been possible. As with the 5-18 year consensus, a Core ‘plus’ approach is suggested in which core assessments (direct and indirect tests) are recommended for all clinical trials. The core component is a brief screening assessment that, in most countries, is a sub-component of routine clinical provision and therefore achievable even where specific resources for QoS assessment are unavailable. The ‘plus’ component enables the addition of assessments which can be selected for tumour-, age-, and location-specific groups in order to enhance the overview of specific medical, cognitive and other relevant domains.

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Published date: 22 June 2018

Identifiers

Local EPrints ID: 430525
URI: http://eprints.soton.ac.uk/id/eprint/430525
ISSN: 1522-8517
PURE UUID: 6782b699-c58f-4915-bbbf-ae35fe7fc70d
ORCID for Kim Bull: ORCID iD orcid.org/0000-0002-5541-4556

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Date deposited: 03 May 2019 16:30
Last modified: 16 Mar 2024 03:06

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Contributors

Author: Jennifer A. Limond
Author: Sophie Thomas
Author: Kim Bull ORCID iD
Author: Jurgen Lemiere
Author: Thomas Traunwieser
Author: Helen Spoudeas
Author: Hanneke M. Van Santen
Author: Liesa Weiler-Wichtl
Author: Peggy Lüttich
Author: Gabriele Calaminus
Author: Matilde Chevignard

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