Systematic Review of Conceptual, Age, Measurement and Valuation Considerations for Generic Multidimensional Childhood Patient-Reported Outcome Measures

dc.contributor.authorKwon, Joseph
dc.contributor.authorHuynh, Elisabeth
dc.contributor.authorFreijser, Louise
dc.contributor.authorHowell, Martin
dc.contributor.authorChen, Gang
dc.contributor.authorKhan, Kamran
dc.contributor.authorDaher, Shahd
dc.contributor.authorRoberts, Nia
dc.contributor.authorHarrison, Conrad
dc.contributor.authorLancsar, Emily
dc.date.accessioned2024-04-02T01:33:55Z
dc.date.available2024-04-02T01:33:55Z
dc.date.issued2022
dc.date.updated2022-11-13T07:19:27Z
dc.description.abstractBackground and Aims Patient-reported outcome measures (PROMs) for children (aged ≤ 18 years) present methodological challenges. PROMs can be categorised by their diverse underlying conceptual bases, including functional, disability and health (FDH) status; quality of life (QoL); and health-related quality of life (HRQoL). Some PROMs are designed to be accompanied by preference weights. PROMs should account for childhood developmental differences by incorporating age-appropriate health/QoL domains, guidance on respondent type(s) and design. This systematic review aims to identify generic multidimensional childhood PROMs and synthesise their characteristics by conceptual basis, target age, measurement considerations, and the preference-based value sets that accompany them. Methods The study protocol was registered in the Prospective Register of Systematic Reviews (CRD42021230833), and reporting followed Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. We conducted systematic database searches for generic multidimensional childhood PROMs covering the period 2012–2020, which we combined with published PROMs identified by an earlier systematic review that covered the period 1992–2011. A second systematic database search identified preference-based value sets for generic multidimensional PROMs. The PROMs were categorised by conceptual basis (FDH status, QoL and HRQoL) and by target age (namely infants and pre-schoolers aged < 5 years, pre-adolescents aged 5–11, adolescents aged 12–18 and multi-age group coverage). Descriptive statistics assessed how PROM characteristics (domain coverage, respondent type and design) varied by conceptual basis and age categories. Involvement of children in PROM development and testing was assessed to understand content validity. Characteristics of value sets available for the childhood generic multidimensional PROMs were identified and compared. Results We identified 89 PROMs, including 110 versions: 52 FDH, 29 QoL, 12 HRQoL, nine QoL-FDH and eight HRQoL-FDH measures; 20 targeted infants and pre-schoolers, 29 pre-adolescents, 24 adolescents and 37 for multiple age groups. Domain coverage demonstrated development trajectories from observable FDH aspects in infancy through to personal independence and relationships during adolescence. PROMs targeting younger children relied more on informant report, were shorter and had fewer ordinal scale points. One-third of PROMs were developed following qualitative research or surveys with children or parents for concept elicitation. There were 21 preference-based value sets developed by 19 studies of ten generic multidimensional childhood PROMs: seven were based on adolescents’ stated preferences, seven were from adults from the perspective of or on behalf of the child, and seven were from adults adopting an adult’s perspective. Diverse preference elicitation methods were used to elicit values. Practices with respect to anchoring values on the utility scale also varied considerably. The range and distribution of values reflect these differences, resulting in value sets with notably different properties. Conclusion Identification and categorisation of generic multidimensional childhood PROMs and value sets by this review can aid the development, selection and interpretation of appropriate measures for clinical and population research and cost-effectiveness-based decision-making.en_AU
dc.description.sponsorshipThis research has been funded by the Australian Government’s Medical Research Future Fund under Grants MRF1200816 and MRF1199902. SP receives support as a National Institute for Health Research (NIHR) Senior Investigator (NF-SI-0616-10103) and from the NIHR Applied Research Collaboration Oxford and Thames Valley. CH is funded by an NIHR Doctoral Research Fellowship (NIHR300684). The views expressed are those of the authors and not necessarily those of the Australian Government, the NIHR or the Department of Health and Social Care in England.en_AU
dc.format.mimetypeapplication/pdfen_AU
dc.identifier.issn1170-7690en_AU
dc.identifier.urihttp://hdl.handle.net/1885/316428
dc.language.isoen_AUen_AU
dc.provenanceThis article is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License, which permits any non-commercial use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by-nc/4.0/.en_AU
dc.publisherAdis International Ltd.en_AU
dc.rights© 2022 The authorsen_AU
dc.rights.licenseCreative Commons Attribution licenceen_AU
dc.rights.urihttp://creativecommons.org/licenses/by/4.0/en_AU
dc.sourcePharmacoEconomicsen_AU
dc.titleSystematic Review of Conceptual, Age, Measurement and Valuation Considerations for Generic Multidimensional Childhood Patient-Reported Outcome Measuresen_AU
dc.typeJournal articleen_AU
dcterms.accessRightsOpen Accessen_AU
local.bibliographicCitation.lastpage431en_AU
local.bibliographicCitation.startpage379en_AU
local.contributor.affiliationKwon, Joseph, Warwick Medical schoolen_AU
local.contributor.affiliationHuynh, Elisabeth, College of Health and Medicine, ANUen_AU
local.contributor.affiliationFreijser, Louise, Centre for Health Policy, University of Melbourneen_AU
local.contributor.affiliationHowell, Martin, University of Sydneyen_AU
local.contributor.affiliationChen, Gang, Monash Universityen_AU
local.contributor.affiliationKhan, Kamran, Centre for Health Economics at Warwick, University of Warwicken_AU
local.contributor.affiliationDaher, Shahd, Nufeld Department of Primary Care Health Sciences, University of Oxforden_AU
local.contributor.affiliationRoberts, Nia, Bodleian Health Care Libraries, University of Oxforden_AU
local.contributor.affiliationHarrison, Conrad, Nufeld Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxforden_AU
local.contributor.affiliationLancsar, Emily, College of Health and Medicine, ANUen_AU
local.contributor.authoremailrepository.admin@anu.edu.auen_AU
local.contributor.authoruidHuynh, Elisabeth, u1068004en_AU
local.contributor.authoruidLancsar, Emily, u3594049en_AU
local.description.notesImported from ARIESen_AU
local.identifier.absfor380108 - Health economicsen_AU
local.identifier.ariespublicationu6084937xPUB17en_AU
local.identifier.citationvolume40en_AU
local.identifier.doi10.1007/s40273-021-01128-0en_AU
local.identifier.uidSubmittedByu6084937en_AU
local.publisher.urlhttps://link.springer.com/en_AU
local.type.statusPublished Versionen_AU

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