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Questionnaire-based reports of Quality of Survival and direct assessments of cognitive performance in children treated for medulloblastoma in the PNET 4 randomized controlled trial

Questionnaire-based reports of Quality of Survival and direct assessments of cognitive performance in children treated for medulloblastoma in the PNET 4 randomized controlled trial
Questionnaire-based reports of Quality of Survival and direct assessments of cognitive performance in children treated for medulloblastoma in the PNET 4 randomized controlled trial
Background: The relationship between direct assessments of cognitive performance and questionnaires assessing quality of survival (QoS) is reported to be weak-to-nonexistent. Conversely, the associations between questionnaires evaluating distinct domains of QoS tend to be strong. This pattern remains understudied.

Methods: In the HIT-SIOP PNET4 randomized controlled trial, cognitive assessments, including Full Scale, Verbal and Performance IQ, Working Memory, and Processing Speed, were undertaken in 137 survivors of standard-risk medulloblastoma from 4 European countries. QoS questionnaires, including self-reports and/or parent reports of the Behavior Rating Inventory of Executive Function (BRIEF), the Health Utilities Index, the Strengths and Difficulties Questionnaire, and the Pediatric Quality of Life Inventory, were completed for 151 survivors. Correlations among direct cognitive assessments, QoS questionnaires, and clinical data were examined in participants with both assessments available (n = 86).

Results: Correlations between direct measures of cognitive performance and QoS questionnaires were weak, except for moderate correlations between the BRIEF Metacognition Index (parent report) and working memory (r = .32) and between health status (self-report) and cognitive outcomes (r = .35–.44). Correlations among QoS questionnaires were moderate to strong both for parent and self-report (r = .39–.76). Principal Component Analysis demonstrated that questionnaires and cognitive assessments loaded on 2 separate factors.

Conclusions: We hypothesize that the strong correlations among QoS questionnaires is partially attributable to the positive/negative polarity of all questions on the questionnaires, coupled with the relative absence of disease-specific questions. These factors may be influenced by respondents’ personality and emotional characteristics, unlike direct assessments of cognitive functioning, and should be taken into account in clinical trials.
2054-2577
Câmara-Costa, Hugo
65b5e0c2-f6bb-4bb5-aed2-aad428619544
Kennedy, Colin
7c3aff62-0a86-4b44-b7d7-4bc01f23ec93
Bull, Kim
751f8b25-29ba-4d4f-96e2-6c339a83a47f
Wiener, Andreas
d9ec4371-d7b2-47f2-8cc7-a5a9a911819d
Calaminus, Gabriele
5f85276d-ee2b-4336-8b0b-a94c7b69c7b2
Resch, Anika
2072eba5-f70c-488a-9a8d-94ab55ec422a
Kieffer, Virginie
040f3c1b-ab18-49bd-b25d-134c2bf55cf8
Lalande, Clémence
10392d88-06ab-4dd0-a879-00f51a0487e7
Poggi, Geraldina
b3f8f70b-6458-4682-a874-09c811539229
von Hoff, Katja
1a7f04de-7bb8-452b-9761-4957ee9121d0
Grill, Jacques
27893adb-54ef-4eea-98dc-d94092ff1539
Doz, François
e481a57d-379f-4fda-adae-c37581e839f7
Rutkowski, Stefan
d77a8428-40b1-468a-9cfa-c85ad1b84ee3
Massimino, Maura
4fe9b9c6-1c49-43d0-b447-4ec24488d4d4
Kortmann, Rolf-Dieter
4feab9e1-94fd-4e7e-8304-aad3dbf473c5
Lannering, Brigitta
6d402d2b-2e04-4abc-b165-2e5ed51a1184
Dellatolas, Georges
b6783dfd-3f84-4cc0-8588-4e55338f48e9
Chevignard, Mathilde
4bc19521-5c91-44cd-a4ca-20197d744e7a
[error in script]
Câmara-Costa, Hugo
65b5e0c2-f6bb-4bb5-aed2-aad428619544
Kennedy, Colin
7c3aff62-0a86-4b44-b7d7-4bc01f23ec93
Bull, Kim
751f8b25-29ba-4d4f-96e2-6c339a83a47f
Wiener, Andreas
d9ec4371-d7b2-47f2-8cc7-a5a9a911819d
Calaminus, Gabriele
5f85276d-ee2b-4336-8b0b-a94c7b69c7b2
Resch, Anika
2072eba5-f70c-488a-9a8d-94ab55ec422a
Kieffer, Virginie
040f3c1b-ab18-49bd-b25d-134c2bf55cf8
Lalande, Clémence
10392d88-06ab-4dd0-a879-00f51a0487e7
Poggi, Geraldina
b3f8f70b-6458-4682-a874-09c811539229
von Hoff, Katja
1a7f04de-7bb8-452b-9761-4957ee9121d0
Grill, Jacques
27893adb-54ef-4eea-98dc-d94092ff1539
Doz, François
e481a57d-379f-4fda-adae-c37581e839f7
Rutkowski, Stefan
d77a8428-40b1-468a-9cfa-c85ad1b84ee3
Massimino, Maura
4fe9b9c6-1c49-43d0-b447-4ec24488d4d4
Kortmann, Rolf-Dieter
4feab9e1-94fd-4e7e-8304-aad3dbf473c5
Lannering, Brigitta
6d402d2b-2e04-4abc-b165-2e5ed51a1184
Dellatolas, Georges
b6783dfd-3f84-4cc0-8588-4e55338f48e9
Chevignard, Mathilde
4bc19521-5c91-44cd-a4ca-20197d744e7a

Câmara-Costa, Hugo, Kennedy, Colin, Bull, Kim, Wiener, Andreas, Calaminus, Gabriele, Resch, Anika, Kieffer, Virginie, Lalande, Clémence, Poggi, Geraldina, von Hoff, Katja, Grill, Jacques, Doz, François, Rutkowski, Stefan, Massimino, Maura, Kortmann, Rolf-Dieter, Lannering, Brigitta, Dellatolas, Georges and Chevignard, Mathilde Quality of Survival working group of the Brain Tumour Group of SIOP-Europe (2017) Questionnaire-based reports of Quality of Survival and direct assessments of cognitive performance in children treated for medulloblastoma in the PNET 4 randomized controlled trial Neuro-Oncology Practice (doi:10.1093/nop/npw028).

Record type: Article

Abstract

Background: The relationship between direct assessments of cognitive performance and questionnaires assessing quality of survival (QoS) is reported to be weak-to-nonexistent. Conversely, the associations between questionnaires evaluating distinct domains of QoS tend to be strong. This pattern remains understudied.

Methods: In the HIT-SIOP PNET4 randomized controlled trial, cognitive assessments, including Full Scale, Verbal and Performance IQ, Working Memory, and Processing Speed, were undertaken in 137 survivors of standard-risk medulloblastoma from 4 European countries. QoS questionnaires, including self-reports and/or parent reports of the Behavior Rating Inventory of Executive Function (BRIEF), the Health Utilities Index, the Strengths and Difficulties Questionnaire, and the Pediatric Quality of Life Inventory, were completed for 151 survivors. Correlations among direct cognitive assessments, QoS questionnaires, and clinical data were examined in participants with both assessments available (n = 86).

Results: Correlations between direct measures of cognitive performance and QoS questionnaires were weak, except for moderate correlations between the BRIEF Metacognition Index (parent report) and working memory (r = .32) and between health status (self-report) and cognitive outcomes (r = .35–.44). Correlations among QoS questionnaires were moderate to strong both for parent and self-report (r = .39–.76). Principal Component Analysis demonstrated that questionnaires and cognitive assessments loaded on 2 separate factors.

Conclusions: We hypothesize that the strong correlations among QoS questionnaires is partially attributable to the positive/negative polarity of all questions on the questionnaires, coupled with the relative absence of disease-specific questions. These factors may be influenced by respondents’ personality and emotional characteristics, unlike direct assessments of cognitive functioning, and should be taken into account in clinical trials.

PDF Camara-Costa et al 2017 Accepted manuscript - Accepted Manuscript
Restricted to Repository staff only until 10 February 2018.

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Accepted/In Press date: 13 October 2016
e-pub ahead of print date: 10 February 2017
Organisations: Clinical & Experimental Sciences

Identifiers

Local EPrints ID: 406151
URI: http://eprints.soton.ac.uk/id/eprint/406151
ISSN: 2054-2577
PURE UUID: f2e9dcf6-8e00-4db1-bcec-96f94fda165d
ORCID for Kim Bull: ORCID iD orcid.org/0000-0002-5541-4556

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Date deposited: 10 Mar 2017 10:40
Last modified: 17 Jul 2017 14:00

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Contributors

Author: Hugo Câmara-Costa
Author: Colin Kennedy
Author: Kim Bull ORCID iD
Author: Andreas Wiener
Author: Gabriele Calaminus
Author: Anika Resch
Author: Virginie Kieffer
Author: Clémence Lalande
Author: Geraldina Poggi
Author: Katja von Hoff
Author: Jacques Grill
Author: François Doz
Author: Stefan Rutkowski
Author: Maura Massimino
Author: Rolf-Dieter Kortmann
Author: Brigitta Lannering
Author: Georges Dellatolas
Author: Mathilde Chevignard

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