Treatment Burden for Pediatric Eosinophilic Esophagitis: A Cross-Sectional Survey of Carers.

Hannan, N; McMillan, SS; Tiralongo, E; Steel, A

Treatment Burden for Pediatric Eosinophilic Esophagitis: A Cross-Sectional Survey of Carers.

Hannan, N McMillan, SS Tiralongo, E Steel, A

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Publisher:: OXFORD UNIV PRESS INC
Publication Type:: Journal Article
Citation:: J Pediatr Psychol, 2021, 46, (1), pp. 100-111
Issue Date:: 2021-01-20

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Field	Value	Language
dc.contributor.author	Hannan, N
dc.contributor.author	McMillan, SS
dc.contributor.author	Tiralongo, E
dc.contributor.author	Steel, A https://orcid.org/0000-0001-6643-9444
dc.date.accessioned	2022-03-18T02:23:01Z
dc.date.available	2020-09-14
dc.date.available	2022-03-18T02:23:01Z
dc.date.issued	2021-01-20
dc.identifier.citation	J Pediatr Psychol, 2021, 46, (1), pp. 100-111
dc.identifier.issn	0146-8693
dc.identifier.issn	1465-735X
dc.identifier.uri	http://hdl.handle.net/10453/155306
dc.description.abstract	OBJECTIVE: To investigate treatment burden and impact on health-related quality of life (HRQoL) for children with eosinophilic esophagitis (EoE) and their carers. METHODS: An Australian cross-sectional online survey of carers of children aged 18 years and under with EoE between September 2018 to February 2019. RESULTS: Of 181 complete responses, more than half of carers experienced reduced HRQoL since their child's diagnosis. Reported mean out-of-pocket expenditure for healthcare utilization (practitioner visits and treatment) was AUD$3064.3 annually. Backwards stepwise linear regression models showed that reduced ability to manage on income and missing more than one workday in the previous 30 days were significant predictors of lower carer HRQoL. Ability to manage on the current income described as "difficult some of the time," "difficult all of the time," and "impossible" were associated with lower child HRQoL. When compared with EoE diagnosis between 13 and 23 months of age, diagnosis between 2 and 4 years was a significant predictor of lowered child HRQoL. CONCLUSIONS: Pediatric EoE in Australia leads to high treatment burden for carers. Changes in carer employment and income manageability can negatively impact carer psychosocial wellbeing. Carers of children with EoE need to be informed about available financial and social support to reduce treatment-related burden and improve the quality of life of both the carer and child.
dc.format	Print
dc.language	eng
dc.publisher	OXFORD UNIV PRESS INC
dc.relation.ispartof	J Pediatr Psychol
dc.relation.isbasedon	10.1093/jpepsy/jsaa095
dc.rights	info:eu-repo/semantics/closedAccess
dc.subject	1701 Psychology
dc.subject.classification	Developmental & Child Psychology
dc.subject.mesh	Australia
dc.subject.mesh	Caregivers
dc.subject.mesh	Child
dc.subject.mesh	Child, Preschool
dc.subject.mesh	Cross-Sectional Studies
dc.subject.mesh	Eosinophilic Esophagitis
dc.subject.mesh	Humans
dc.subject.mesh	Quality of Life
dc.subject.mesh	Surveys and Questionnaires
dc.subject.mesh	Humans
dc.subject.mesh	Cross-Sectional Studies
dc.subject.mesh	Quality of Life
dc.subject.mesh	Child
dc.subject.mesh	Child, Preschool
dc.subject.mesh	Caregivers
dc.subject.mesh	Australia
dc.subject.mesh	Eosinophilic Esophagitis
dc.subject.mesh	Surveys and Questionnaires
dc.title	Treatment Burden for Pediatric Eosinophilic Esophagitis: A Cross-Sectional Survey of Carers.
dc.type	Journal Article
utslib.citation.volume	46
utslib.location.activity	United States
utslib.for	1701 Psychology
pubs.organisational-group	/University of Technology Sydney
pubs.organisational-group	/University of Technology Sydney/Faculty of Health
utslib.copyright.status	closed_access	*
dc.date.updated	2022-03-18T02:23:00Z
pubs.issue	1
pubs.publication-status	Published
pubs.volume	46
utslib.citation.issue	1

Abstract:

OBJECTIVE: To investigate treatment burden and impact on health-related quality of life (HRQoL) for children with eosinophilic esophagitis (EoE) and their carers. METHODS: An Australian cross-sectional online survey of carers of children aged 18 years and under with EoE between September 2018 to February 2019. RESULTS: Of 181 complete responses, more than half of carers experienced reduced HRQoL since their child's diagnosis. Reported mean out-of-pocket expenditure for healthcare utilization (practitioner visits and treatment) was AUD$3064.3 annually. Backwards stepwise linear regression models showed that reduced ability to manage on income and missing more than one workday in the previous 30 days were significant predictors of lower carer HRQoL. Ability to manage on the current income described as "difficult some of the time," "difficult all of the time," and "impossible" were associated with lower child HRQoL. When compared with EoE diagnosis between 13 and 23 months of age, diagnosis between 2 and 4 years was a significant predictor of lowered child HRQoL. CONCLUSIONS: Pediatric EoE in Australia leads to high treatment burden for carers. Changes in carer employment and income manageability can negatively impact carer psychosocial wellbeing. Carers of children with EoE need to be informed about available financial and social support to reduce treatment-related burden and improve the quality of life of both the carer and child.

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http://hdl.handle.net/10453/155306