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Quality of survival assessment in European childhood brain tumour trials, for children aged 5 years and over

Quality of survival assessment in European childhood brain tumour trials, for children aged 5 years and over
Quality of survival assessment in European childhood brain tumour trials, for children aged 5 years and over
Introduction

There is increasing recognition of the long-term sequelae of brain tumours treated in childhood. Five year survival rates now exceed 75% and assessing the quality of survival (QoS) in multiple domains is essential to any comparison of the benefits and harms of treatment regimens.

Aim

The aim of this position statement is to rationalise assessments and facilitate collection of a common data set across Europe. Sufficient numbers of observations can then be made to enable reliable comparisons between outcomes following different tumour types and treatments.

Methods

This paper represents the consensus view of the QoS working group of the Brain Tumour group of the European Society of Paediatric Oncology regarding domains of QoS to prioritise for assessment in clinical trials. This consensus between clinicians and researchers across Europe has been arrived at by discussion and collaboration over the last eight years.

Results

Areas of assessment discussed include core medical domains (e.g. vision, hearing, mobility, endocrine), emotion, behaviour, adaptive behaviour and cognitive functioning.

Conclusions

A ‘core plus’ approach is suggested in which core assessments (both direct and indirect tests) are recommended for all clinical trials. The core component is a relatively brief screening assessment that, in most countries, is a sub-component of routine clinical provision. The ‘plus’ components enable the addition of assessments which can be selected by individual countries and/or tumour-, age-, and location-specific groups. The implementation of a QoS protocol common to all European clinical studies of childhood brain tumours is also discussed
assessment, quality of survival, brain tumour, children, late effects
1090-3798
202-210
Limond, Jennifer A.
dd1f37dc-5ea4-48df-83a4-71a43edfb9ab
Bull, Kim S.
751f8b25-29ba-4d4f-96e2-6c339a83a47f
Calaminus, Gabriele
5f85276d-ee2b-4336-8b0b-a94c7b69c7b2
Kennedy, Colin R.
7c3aff62-0a86-4b44-b7d7-4bc01f23ec93
Spoudeas, Helen
14125f12-6f5e-4592-8437-528ce7cc92db
Chevignard, Mathilde
4bc19521-5c91-44cd-a4ca-20197d744e7a
on behalf of the Brain Tumour Quality of Survival Group, International Society of Paediatric Oncology (Europe) (SIOP-E)
Limond, Jennifer A.
dd1f37dc-5ea4-48df-83a4-71a43edfb9ab
Bull, Kim S.
751f8b25-29ba-4d4f-96e2-6c339a83a47f
Calaminus, Gabriele
5f85276d-ee2b-4336-8b0b-a94c7b69c7b2
Kennedy, Colin R.
7c3aff62-0a86-4b44-b7d7-4bc01f23ec93
Spoudeas, Helen
14125f12-6f5e-4592-8437-528ce7cc92db
Chevignard, Mathilde
4bc19521-5c91-44cd-a4ca-20197d744e7a

Limond, Jennifer A., Bull, Kim S., Calaminus, Gabriele, Kennedy, Colin R., Spoudeas, Helen and Chevignard, Mathilde , on behalf of the Brain Tumour Quality of Survival Group, International Society of Paediatric Oncology (Europe) (SIOP-E) (2015) Quality of survival assessment in European childhood brain tumour trials, for children aged 5 years and over. European Journal of Paediatric Neurology, 19 (2), 202-210. (doi:10.1016/j.ejpn.2014.12.003). (PMID:25617909)

Record type: Article

Abstract

Introduction

There is increasing recognition of the long-term sequelae of brain tumours treated in childhood. Five year survival rates now exceed 75% and assessing the quality of survival (QoS) in multiple domains is essential to any comparison of the benefits and harms of treatment regimens.

Aim

The aim of this position statement is to rationalise assessments and facilitate collection of a common data set across Europe. Sufficient numbers of observations can then be made to enable reliable comparisons between outcomes following different tumour types and treatments.

Methods

This paper represents the consensus view of the QoS working group of the Brain Tumour group of the European Society of Paediatric Oncology regarding domains of QoS to prioritise for assessment in clinical trials. This consensus between clinicians and researchers across Europe has been arrived at by discussion and collaboration over the last eight years.

Results

Areas of assessment discussed include core medical domains (e.g. vision, hearing, mobility, endocrine), emotion, behaviour, adaptive behaviour and cognitive functioning.

Conclusions

A ‘core plus’ approach is suggested in which core assessments (both direct and indirect tests) are recommended for all clinical trials. The core component is a relatively brief screening assessment that, in most countries, is a sub-component of routine clinical provision. The ‘plus’ components enable the addition of assessments which can be selected by individual countries and/or tumour-, age-, and location-specific groups. The implementation of a QoS protocol common to all European clinical studies of childhood brain tumours is also discussed

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More information

Accepted/In Press date: 9 December 2014
e-pub ahead of print date: 17 December 2014
Published date: March 2015
Keywords: assessment, quality of survival, brain tumour, children, late effects
Organisations: Clinical & Experimental Sciences

Identifiers

Local EPrints ID: 376608
URI: https://eprints.soton.ac.uk/id/eprint/376608
ISSN: 1090-3798
PURE UUID: c067bc5d-aec0-4b24-998e-0d03633077bb
ORCID for Kim S. Bull: ORCID iD orcid.org/0000-0002-5541-4556

Catalogue record

Date deposited: 29 Apr 2015 15:55
Last modified: 06 Jun 2018 12:54

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