Systematic Review of Conceptual, Age, Measurement and Valuation Considerations for Generic Multidimensional Childhood Patient-Reported Outcome Measures
dc.contributor.author | Kwon, Joseph | |
dc.contributor.author | Huynh, Elisabeth | |
dc.contributor.author | Freijser, Louise | |
dc.contributor.author | Howell, Martin | |
dc.contributor.author | Chen, Gang | |
dc.contributor.author | Khan, Kamran | |
dc.contributor.author | Daher, Shahd | |
dc.contributor.author | Roberts, Nia | |
dc.contributor.author | Harrison, Conrad | |
dc.contributor.author | Lancsar, Emily | |
dc.date.accessioned | 2024-04-02T01:33:55Z | |
dc.date.available | 2024-04-02T01:33:55Z | |
dc.date.issued | 2022 | |
dc.date.updated | 2022-11-13T07:19:27Z | |
dc.description.abstract | Background 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.sponsorship | This 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.mimetype | application/pdf | en_AU |
dc.identifier.issn | 1170-7690 | en_AU |
dc.identifier.uri | http://hdl.handle.net/1885/316428 | |
dc.language.iso | en_AU | en_AU |
dc.provenance | This 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.publisher | Adis International Ltd. | en_AU |
dc.rights | © 2022 The authors | en_AU |
dc.rights.license | Creative Commons Attribution licence | en_AU |
dc.rights.uri | http://creativecommons.org/licenses/by/4.0/ | en_AU |
dc.source | PharmacoEconomics | en_AU |
dc.title | Systematic Review of Conceptual, Age, Measurement and Valuation Considerations for Generic Multidimensional Childhood Patient-Reported Outcome Measures | en_AU |
dc.type | Journal article | en_AU |
dcterms.accessRights | Open Access | en_AU |
local.bibliographicCitation.lastpage | 431 | en_AU |
local.bibliographicCitation.startpage | 379 | en_AU |
local.contributor.affiliation | Kwon, Joseph, Warwick Medical school | en_AU |
local.contributor.affiliation | Huynh, Elisabeth, College of Health and Medicine, ANU | en_AU |
local.contributor.affiliation | Freijser, Louise, Centre for Health Policy, University of Melbourne | en_AU |
local.contributor.affiliation | Howell, Martin, University of Sydney | en_AU |
local.contributor.affiliation | Chen, Gang, Monash University | en_AU |
local.contributor.affiliation | Khan, Kamran, Centre for Health Economics at Warwick, University of Warwick | en_AU |
local.contributor.affiliation | Daher, Shahd, Nufeld Department of Primary Care Health Sciences, University of Oxford | en_AU |
local.contributor.affiliation | Roberts, Nia, Bodleian Health Care Libraries, University of Oxford | en_AU |
local.contributor.affiliation | Harrison, Conrad, Nufeld Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford | en_AU |
local.contributor.affiliation | Lancsar, Emily, College of Health and Medicine, ANU | en_AU |
local.contributor.authoremail | repository.admin@anu.edu.au | en_AU |
local.contributor.authoruid | Huynh, Elisabeth, u1068004 | en_AU |
local.contributor.authoruid | Lancsar, Emily, u3594049 | en_AU |
local.description.notes | Imported from ARIES | en_AU |
local.identifier.absfor | 380108 - Health economics | en_AU |
local.identifier.ariespublication | u6084937xPUB17 | en_AU |
local.identifier.citationvolume | 40 | en_AU |
local.identifier.doi | 10.1007/s40273-021-01128-0 | en_AU |
local.identifier.uidSubmittedBy | u6084937 | en_AU |
local.publisher.url | https://link.springer.com/ | en_AU |
local.type.status | Published Version | en_AU |
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