Collecting Paediatric Health-Related Quality of Life Data: Assessing the Feasibility and Acceptability of the Australian Paediatric Multi-Instrument Comparison (P-MIC) Study

Jones, R; O’Loughlin, R; Xiong, X; Bahrampour, M; McGregor, K; Yip, S; Devlin, N; Hiscock, H; Mulhern, B; Dalziel, K

Collecting Paediatric Health-Related Quality of Life Data: Assessing the Feasibility and Acceptability of the Australian Paediatric Multi-Instrument Comparison (P-MIC) Study

Jones, R O’Loughlin, R Xiong, X Bahrampour, M

McGregor, K Yip, S Devlin, N Hiscock, H Mulhern, B Dalziel, K

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Publisher:: MDPI
Publication Type:: Journal Article
Citation:: Children, 10, (10), pp. 1604

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Field	Value	Language
dc.contributor.author	Jones, R
dc.contributor.author	O’Loughlin, R
dc.contributor.author	Xiong, X
dc.contributor.author	Bahrampour, M https://orcid.org/0000-0002-6915-1865
dc.contributor.author	McGregor, K
dc.contributor.author	Yip, S
dc.contributor.author	Devlin, N
dc.contributor.author	Hiscock, H
dc.contributor.author	Mulhern, B
dc.contributor.author	Dalziel, K
dc.date.accessioned	2023-10-18T01:04:18Z
dc.date.available	2023-10-18T01:04:18Z
dc.identifier.citation	Children, 10, (10), pp. 1604
dc.identifier.issn	2227-9067
dc.identifier.issn	2227-9067
dc.identifier.uri	http://hdl.handle.net/10453/172771
dc.description.abstract	<jats:p>Background: Collecting data using paediatric health-related quality of life (HRQoL) instruments is complex, and there is a paucity of evidence regarding the comparative performance of paediatric HRQoL instruments. The Australian Paediatric Multi-Instrument Comparison (P-MIC) study was conducted to address this paucity of evidence. This study aims to understand the (1) feasibility of collecting data using paediatric HRQoL instruments in a research setting and (2) acceptability and feasibility for children and their caregivers to complete common paediatric HRQoL instruments using data from the Australian P-MIC study. Methods: Data were from children aged 5–18 years from the Australian P-MIC study. Demographics, cost and time for data collection, dropout rates, and inconsistent responses were used to assess Aim 1. Participant-reported difficulty and completion time were used to assess Aim 2. Subgroup analyses included child age, report type (self/proxy), sample recruitment pathway (hospital/online), and online panel sample type (general population/condition groups). Results: Overall, 5945 P-MIC participants aged 5–18 years completed an initial survey, of these, 2346 also completed the follow-up survey (39.5% response rate). Compared with online panel recruitment, hospital recruitment was more costly and time-consuming and had higher follow-up completion (33.5% versus 80.4%) (Aim 1). Data were of similar good quality (based on inconsistent responses) for both recruitment pathways (Aim 1). Participants completed each instrument in <3 min, on average, and >70% reported each instrument as easy to complete (Aim 2). Conclusions: The Australian P-MIC study was able to collect good-quality data using both online panel and hospital recruitment pathways. All instruments were acceptable and feasible to children and their caregivers.</jats:p>
dc.language	en
dc.publisher	MDPI
dc.relation.ispartof	Children
dc.relation.isbasedon	10.3390/children10101604
dc.rights	info:eu-repo/semantics/openAccess
dc.subject.classification	3213 Paediatrics
dc.subject.classification	4206 Public health
dc.title	Collecting Paediatric Health-Related Quality of Life Data: Assessing the Feasibility and Acceptability of the Australian Paediatric Multi-Instrument Comparison (P-MIC) Study
dc.type	Journal Article
utslib.citation.volume	10
pubs.organisational-group	/University of Technology Sydney
pubs.organisational-group	/University of Technology Sydney/Faculty of Health
pubs.organisational-group	/University of Technology Sydney/Faculty of Health/Centre for Health Economics Research and Evaluation
utslib.copyright.status	open_access	*
dc.date.updated	2023-10-18T01:04:16Z
pubs.issue	10
pubs.publication-status	Published online
pubs.volume	10
utslib.citation.issue	10

Abstract:

Background: Collecting data using paediatric health-related quality of life (HRQoL) instruments is complex, and there is a paucity of evidence regarding the comparative performance of paediatric HRQoL instruments. The Australian Paediatric Multi-Instrument Comparison (P-MIC) study was conducted to address this paucity of evidence. This study aims to understand the (1) feasibility of collecting data using paediatric HRQoL instruments in a research setting and (2) acceptability and feasibility for children and their caregivers to complete common paediatric HRQoL instruments using data from the Australian P-MIC study. Methods: Data were from children aged 5–18 years from the Australian P-MIC study. Demographics, cost and time for data collection, dropout rates, and inconsistent responses were used to assess Aim 1. Participant-reported difficulty and completion time were used to assess Aim 2. Subgroup analyses included child age, report type (self/proxy), sample recruitment pathway (hospital/online), and online panel sample type (general population/condition groups). Results: Overall, 5945 P-MIC participants aged 5–18 years completed an initial survey, of these, 2346 also completed the follow-up survey (39.5% response rate). Compared with online panel recruitment, hospital recruitment was more costly and time-consuming and had higher follow-up completion (33.5% versus 80.4%) (Aim 1). Data were of similar good quality (based on inconsistent responses) for both recruitment pathways (Aim 1). Participants completed each instrument in <3 min, on average, and >70% reported each instrument as easy to complete (Aim 2). Conclusions: The Australian P-MIC study was able to collect good-quality data using both online panel and hospital recruitment pathways. All instruments were acceptable and feasible to children and their caregivers.

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http://hdl.handle.net/10453/172771