Long-term health-related quality of life in young childhood cancer survivors and their parents.

Fardell, JE; Wakefield, CE; De Abreu Lourenco, R; Signorelli, C; McCarthy, M; McLoone, J; Osborn, M; Gabriel, M; Anazodo, A; Alvaro, F; Lockwood, L; Walwyn, T; Skeen, J; Tillemans, R; Cohn, RJ; ANZCHOG Survivorship Group,

Long-term health-related quality of life in young childhood cancer survivors and their parents.

Fardell, JE Wakefield, CE De Abreu Lourenco, R

Signorelli, C McCarthy, M McLoone, J Osborn, M Gabriel, M Anazodo, A Alvaro, F Lockwood, L Walwyn, T Skeen, J Tillemans, R Cohn, RJ ANZCHOG Survivorship Group,

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Publisher:: Wiley
Publication Type:: Journal Article
Citation:: Pediatric Blood and Cancer, 2021, 68, (12)
Issue Date:: 2021-10-04

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Field	Value	Language
dc.contributor.author	Fardell, JE
dc.contributor.author	Wakefield, CE
dc.contributor.author	De Abreu Lourenco, R https://orcid.org/0000-0002-5978-8774
dc.contributor.author	Signorelli, C
dc.contributor.author	McCarthy, M
dc.contributor.author	McLoone, J
dc.contributor.author	Osborn, M
dc.contributor.author	Gabriel, M
dc.contributor.author	Anazodo, A
dc.contributor.author	Alvaro, F
dc.contributor.author	Lockwood, L
dc.contributor.author	Walwyn, T
dc.contributor.author	Skeen, J
dc.contributor.author	Tillemans, R
dc.contributor.author	Cohn, RJ
dc.contributor.author	ANZCHOG Survivorship Group,
dc.date.accessioned	2021-11-11T03:46:34Z
dc.date.available	2021-09-11
dc.date.available	2021-11-11T03:46:34Z
dc.date.issued	2021-10-04
dc.identifier.citation	Pediatric Blood and Cancer, 2021, 68, (12)
dc.identifier.issn	1545-5009
dc.identifier.issn	1545-5017
dc.identifier.uri	http://hdl.handle.net/10453/151501
dc.description.abstract	Purpose Few studies have investigated the health-related quality of life (HRQoL) of young childhood cancer survivors and their parents. This study describes parent and child cancer survivor HRQoL compared to population norms and identifies factors influencing child and parent HRQoL. Methods We recruited parents of survivors who were currently <16 years, and >5 years postdiagnosis. Parents reported on their child's HRQoL (Kidscreen-10), and their own HRQoL (EQ-5D-5L). Parents rated their resilience and fear of cancer recurrence and listed their child's cancer-related late effects. Results One hundred eighty-two parents of survivors (mean age = 12.4 years old and 9.7 years postdiagnosis) participated. Parent-reported child HRQoL was significantly lower than population norms (48.4 vs. 50.7, p < .009). Parents most commonly reported that their child experienced sadness and loneliness (18.1%). Experiencing more late effects and receiving treatments other than surgery were associated with worse child HRQoL. Parents’ average HRQoL was high (0.90) and no different to population norms. However 38.5% of parents reported HRQoL that was clinically meaningfully different from perfect health, and parents experienced more problems with anxiety/depression (43.4%) than population norms (24.7%, p < .0001). Worse child HRQoL, lower parent resilience, and higher fear of recurrence was associated with worse parent HRQoL. Conclusions Parents report that young survivors experience small but significant ongoing reductions in HRQoL. While overall mean levels of HRQoL were no different to population norms, a subset of parents reported HRQoL that was clinically meaningfully different from perfect health. Managing young survivors’ late effects and improving parents’ resilience through survivorship may improve HRQoL in long-term survivorship.
dc.format	Print-Electronic
dc.language	eng
dc.publisher	Wiley
dc.relation.ispartof	Pediatric Blood and Cancer
dc.relation.isbasedon	10.1002/pbc.29398
dc.rights	info:eu-repo/semantics/closedAccess
dc.subject	1103 Clinical Sciences, 1112 Oncology and Carcinogenesis, 1114 Paediatrics and Reproductive Medicine
dc.subject.classification	Oncology & Carcinogenesis
dc.title	Long-term health-related quality of life in young childhood cancer survivors and their parents.
dc.type	Journal Article
utslib.citation.volume	68
utslib.location.activity	United States
utslib.for	1103 Clinical Sciences
utslib.for	1112 Oncology and Carcinogenesis
utslib.for	1114 Paediatrics and Reproductive Medicine
pubs.organisational-group	/University of Technology Sydney
pubs.organisational-group	/University of Technology Sydney/Faculty of Health
pubs.organisational-group	/University of Technology Sydney/Strength - CHERE - Centre for Health Economics Research and Evaluation
pubs.organisational-group	/University of Technology Sydney/Strength - CHT - Health Technologies
pubs.organisational-group	/University of Technology Sydney/Centre for Health Technologies (CHT)
utslib.copyright.status	closed_access	*
pubs.consider-herdc	false
dc.date.updated	2021-11-11T03:46:32Z
pubs.issue	12
pubs.publication-status	Published
pubs.volume	68
utslib.citation.issue	12

Abstract:

Purpose Few studies have investigated the health-related quality of life (HRQoL) of young childhood cancer survivors and their parents. This study describes parent and child cancer survivor HRQoL compared to population norms and identifies factors influencing child and parent HRQoL. Methods We recruited parents of survivors who were currently <16 years, and >5 years postdiagnosis. Parents reported on their child's HRQoL (Kidscreen-10), and their own HRQoL (EQ-5D-5L). Parents rated their resilience and fear of cancer recurrence and listed their child's cancer-related late effects. Results One hundred eighty-two parents of survivors (mean age = 12.4 years old and 9.7 years postdiagnosis) participated. Parent-reported child HRQoL was significantly lower than population norms (48.4 vs. 50.7, p < .009). Parents most commonly reported that their child experienced sadness and loneliness (18.1%). Experiencing more late effects and receiving treatments other than surgery were associated with worse child HRQoL. Parents’ average HRQoL was high (0.90) and no different to population norms. However 38.5% of parents reported HRQoL that was clinically meaningfully different from perfect health, and parents experienced more problems with anxiety/depression (43.4%) than population norms (24.7%, p < .0001). Worse child HRQoL, lower parent resilience, and higher fear of recurrence was associated with worse parent HRQoL. Conclusions Parents report that young survivors experience small but significant ongoing reductions in HRQoL. While overall mean levels of HRQoL were no different to population norms, a subset of parents reported HRQoL that was clinically meaningfully different from perfect health. Managing young survivors’ late effects and improving parents’ resilience through survivorship may improve HRQoL in long-term survivorship.

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http://hdl.handle.net/10453/151501