A systematic review of condition-specific preference-based measures used in young people and their valuation methods

Abstract Background Condition-specific health-related quality-of-life (HRQoL) instruments can be more responsive and sensitive to specific conditions and diseases than generic HRQoL instruments. This systematic review aims to identify the condition-specific preference-based instruments that have bee...

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Main Authors: William King, Lauren Hockley, Tomos Robinson, Angela Bate, Laura Ternent
Format: Article
Language:English
Published: SpringerOpen 2024-12-01
Series:Journal of Patient-Reported Outcomes
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Online Access:https://doi.org/10.1186/s41687-024-00826-5
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author William King
Lauren Hockley
Tomos Robinson
Angela Bate
Laura Ternent
author_facet William King
Lauren Hockley
Tomos Robinson
Angela Bate
Laura Ternent
author_sort William King
collection DOAJ
description Abstract Background Condition-specific health-related quality-of-life (HRQoL) instruments can be more responsive and sensitive to specific conditions and diseases than generic HRQoL instruments. This systematic review aims to identify the condition-specific preference-based instruments that have been used with young people and identify how preference values have been obtained for these instruments. This review will inform future researchers about the methods used to elicit utilities for condition-specific HRQoL instruments. Methods A comprehensive search strategy was used to identify condition-specific HRQoL instruments used in young people and the methods used to value these instruments. Published medical and health economic databases were searched from January 1990–March 2022. Articles were deemed eligible for inclusion if a condition-specific preference-based instrument was used in young people (age < 18). Screening, data extraction and quality assessment were conducted independently by at least two reviewers. Results After deduplication, a total of 4273 articles were eligible for title and abstract screening. Of these, 98 articles were eligible for full-text screening. After full-text screening, 18 articles were included in the review. Valuation studies were the most prevalent study design in the review (44%), followed by mapping studies (38%) and then other designs (18%). Among the valuation studies, the choice of HRQoL instrument, preference elicitation method, anchoring method and perspective varied considerably. Conclusion To our knowledge, this review is the first to explore what condition-specific HRQoL instruments have been used in young people. Findings from this review could inform researchers in their choice of methods for measuring and valuing HRQoL. This review illustrates that to date there does not appear to be clear consensus of how to measure and value HRQoL in young people when using condition-specific instruments. The lack of consensus could be influenced by challenges identified in prior research such as limited guidance, ethical issues, and uncertain normative decisions regarding the choice of preference elicitation method. Ordinal methods such as discrete choice experiment and best-worst scaling appear to be preferable for use in this population.
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spelling doaj-art-7b5aac09dd504e5cb5bf557ff304df182025-08-20T02:39:48ZengSpringerOpenJournal of Patient-Reported Outcomes2509-80202024-12-018111010.1186/s41687-024-00826-5A systematic review of condition-specific preference-based measures used in young people and their valuation methodsWilliam King0Lauren Hockley1Tomos Robinson2Angela Bate3Laura Ternent4Health Economics Group, Newcastle University Population Health Sciences InstituteNewcastle upon Tyne Hospitals NHS Foundation Trust, NHSHealth Economics Group, Newcastle University Population Health Sciences InstituteNorthumbria UniversityHealth Economics Group, Newcastle University Population Health Sciences InstituteAbstract Background Condition-specific health-related quality-of-life (HRQoL) instruments can be more responsive and sensitive to specific conditions and diseases than generic HRQoL instruments. This systematic review aims to identify the condition-specific preference-based instruments that have been used with young people and identify how preference values have been obtained for these instruments. This review will inform future researchers about the methods used to elicit utilities for condition-specific HRQoL instruments. Methods A comprehensive search strategy was used to identify condition-specific HRQoL instruments used in young people and the methods used to value these instruments. Published medical and health economic databases were searched from January 1990–March 2022. Articles were deemed eligible for inclusion if a condition-specific preference-based instrument was used in young people (age < 18). Screening, data extraction and quality assessment were conducted independently by at least two reviewers. Results After deduplication, a total of 4273 articles were eligible for title and abstract screening. Of these, 98 articles were eligible for full-text screening. After full-text screening, 18 articles were included in the review. Valuation studies were the most prevalent study design in the review (44%), followed by mapping studies (38%) and then other designs (18%). Among the valuation studies, the choice of HRQoL instrument, preference elicitation method, anchoring method and perspective varied considerably. Conclusion To our knowledge, this review is the first to explore what condition-specific HRQoL instruments have been used in young people. Findings from this review could inform researchers in their choice of methods for measuring and valuing HRQoL. This review illustrates that to date there does not appear to be clear consensus of how to measure and value HRQoL in young people when using condition-specific instruments. The lack of consensus could be influenced by challenges identified in prior research such as limited guidance, ethical issues, and uncertain normative decisions regarding the choice of preference elicitation method. Ordinal methods such as discrete choice experiment and best-worst scaling appear to be preferable for use in this population.https://doi.org/10.1186/s41687-024-00826-5Systematic reviewHealth-related quality of lifePreference elicitationEconomic evaluation
spellingShingle William King
Lauren Hockley
Tomos Robinson
Angela Bate
Laura Ternent
A systematic review of condition-specific preference-based measures used in young people and their valuation methods
Journal of Patient-Reported Outcomes
Systematic review
Health-related quality of life
Preference elicitation
Economic evaluation
title A systematic review of condition-specific preference-based measures used in young people and their valuation methods
title_full A systematic review of condition-specific preference-based measures used in young people and their valuation methods
title_fullStr A systematic review of condition-specific preference-based measures used in young people and their valuation methods
title_full_unstemmed A systematic review of condition-specific preference-based measures used in young people and their valuation methods
title_short A systematic review of condition-specific preference-based measures used in young people and their valuation methods
title_sort systematic review of condition specific preference based measures used in young people and their valuation methods
topic Systematic review
Health-related quality of life
Preference elicitation
Economic evaluation
url https://doi.org/10.1186/s41687-024-00826-5
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