How do children understand and respond to the EQ-5D-Y-3L? A mixed methods study in a community-based sample of 6–12-year-olds

Abstract Background The EQ-5D-Y-3L is widely used for measuring and valuing HRQoL in paediatric populations. This mixed methods study used the EQ-5D-Y-3L measure and applied a retrospective think-aloud approach to examine the self-report validity in children of varying chronological age. Methods A m...

Full description

Saved in:
Bibliographic Details
Main Authors: Diana Khanna, Kiri Lay, Jyoti Khadka, Christine Mpundu-Kaambwa, Julie Ratcliffe, in collaboration with the Quality of Life in Kids: Key evidence to strengthen decisions in Australia (QUOKKA) project team
Format: Article
Language:English
Published: BMC 2024-12-01
Series:Health and Quality of Life Outcomes
Subjects:
Online Access:https://doi.org/10.1186/s12955-024-02320-4
Tags: Add Tag
No Tags, Be the first to tag this record!
_version_ 1850137318956990464
author Diana Khanna
Kiri Lay
Jyoti Khadka
Christine Mpundu-Kaambwa
Julie Ratcliffe
in collaboration with the Quality of Life in Kids: Key evidence to strengthen decisions in Australia (QUOKKA) project team
author_facet Diana Khanna
Kiri Lay
Jyoti Khadka
Christine Mpundu-Kaambwa
Julie Ratcliffe
in collaboration with the Quality of Life in Kids: Key evidence to strengthen decisions in Australia (QUOKKA) project team
author_sort Diana Khanna
collection DOAJ
description Abstract Background The EQ-5D-Y-3L is widely used for measuring and valuing HRQoL in paediatric populations. This mixed methods study used the EQ-5D-Y-3L measure and applied a retrospective think-aloud approach to examine the self-report validity in children of varying chronological age. Methods A mixed methods study was conducted in a community-based sample of 39 children aged 6–12 years. In a semi-structured interview, children self-completed the EQ-5D-Y-3L and then engaged in retrospective think-aloud. Conversations were audio-recorded and transcribed for analysis in NVivo using the Tourangeau four-stage response model framework to assess comprehension, judgment, recall, and response mapping issues. Fisher’s exact test was used to assess the differences between child-self reported HRQoL across subgroups. The inter-rater agreement between child-parent dyads was assessed with CCC for overall HRQoL and Gwet’s AC1 for dimension level HRQoL. Results Overall, response issues were detected in n = 18 (46%) children. Comprehension issues were apparent in the “having pain or discomfort” dimension where children found it challenging to understand ‘discomfort’. Recall-related issues were observed where children’s responses were influenced by their typical tendencies (e.g., being usually worried) or past incidences (e.g., feeling pain sometimes). Judgement-related issues were the most common, particularly in the “doing usual activities” dimension, where children tended to respond based on their self-perceived ability to engage in activities rather than health-related limitations. None of the participants were found to have problems with response mapping. A healthy lifestyle that included diet and exercise was a notable consideration in EQ VAS ratings. The younger age groups had a higher proportion of response issues (6–7 years: 64%, 8–10 years: 62%), compared to older children (11–12 years: 20%). Moreover, children with response issues demonstrated significantly lower EQ-5D-Y-3L scores (mean = 0.78, se = 0.04) as compared to those without (mean = 0.95, se = 0.02) (p-value < 0.001). The overall inter-rater agreement was higher for those without any response issues (CCC = 0.33) than those with (CCC = 0.14). Additionally, higher agreement was noted across all the five dimensions in the subgroup with no response issues relative to those with. Conclusions Children in the general community may have different perceptions of HRQoL when responding to the EQ-5D-Y-3L possibly due to their limited experience with health-related challenges. The retrospective think-aloud approach adopted highlighted the relatively higher prevalence of response issues in the younger children (ages < 11 years), indicating the need for careful interpretation of self-reported HRQoL using the current version of the EQ-5D-Y-3L in this population.
format Article
id doaj-art-86751f1776334dcb96eed0963d7329d7
institution OA Journals
issn 1477-7525
language English
publishDate 2024-12-01
publisher BMC
record_format Article
series Health and Quality of Life Outcomes
spelling doaj-art-86751f1776334dcb96eed0963d7329d72025-08-20T02:30:54ZengBMCHealth and Quality of Life Outcomes1477-75252024-12-0122111110.1186/s12955-024-02320-4How do children understand and respond to the EQ-5D-Y-3L? A mixed methods study in a community-based sample of 6–12-year-oldsDiana Khanna0Kiri Lay1Jyoti Khadka2Christine Mpundu-Kaambwa3Julie Ratcliffe4in collaboration with the Quality of Life in Kids: Key evidence to strengthen decisions in Australia (QUOKKA) project teamHealth and Social Care Economics Group, Caring Futures Institute, College of Nursing and Health Sciences, Flinders UniversityHealth and Social Care Economics Group, Caring Futures Institute, College of Nursing and Health Sciences, Flinders UniversityHealth and Social Care Economics Group, Caring Futures Institute, College of Nursing and Health Sciences, Flinders UniversityMelbourne School of Population and Global Health, University of MelbourneHealth and Social Care Economics Group, Caring Futures Institute, College of Nursing and Health Sciences, Flinders UniversityAbstract Background The EQ-5D-Y-3L is widely used for measuring and valuing HRQoL in paediatric populations. This mixed methods study used the EQ-5D-Y-3L measure and applied a retrospective think-aloud approach to examine the self-report validity in children of varying chronological age. Methods A mixed methods study was conducted in a community-based sample of 39 children aged 6–12 years. In a semi-structured interview, children self-completed the EQ-5D-Y-3L and then engaged in retrospective think-aloud. Conversations were audio-recorded and transcribed for analysis in NVivo using the Tourangeau four-stage response model framework to assess comprehension, judgment, recall, and response mapping issues. Fisher’s exact test was used to assess the differences between child-self reported HRQoL across subgroups. The inter-rater agreement between child-parent dyads was assessed with CCC for overall HRQoL and Gwet’s AC1 for dimension level HRQoL. Results Overall, response issues were detected in n = 18 (46%) children. Comprehension issues were apparent in the “having pain or discomfort” dimension where children found it challenging to understand ‘discomfort’. Recall-related issues were observed where children’s responses were influenced by their typical tendencies (e.g., being usually worried) or past incidences (e.g., feeling pain sometimes). Judgement-related issues were the most common, particularly in the “doing usual activities” dimension, where children tended to respond based on their self-perceived ability to engage in activities rather than health-related limitations. None of the participants were found to have problems with response mapping. A healthy lifestyle that included diet and exercise was a notable consideration in EQ VAS ratings. The younger age groups had a higher proportion of response issues (6–7 years: 64%, 8–10 years: 62%), compared to older children (11–12 years: 20%). Moreover, children with response issues demonstrated significantly lower EQ-5D-Y-3L scores (mean = 0.78, se = 0.04) as compared to those without (mean = 0.95, se = 0.02) (p-value < 0.001). The overall inter-rater agreement was higher for those without any response issues (CCC = 0.33) than those with (CCC = 0.14). Additionally, higher agreement was noted across all the five dimensions in the subgroup with no response issues relative to those with. Conclusions Children in the general community may have different perceptions of HRQoL when responding to the EQ-5D-Y-3L possibly due to their limited experience with health-related challenges. The retrospective think-aloud approach adopted highlighted the relatively higher prevalence of response issues in the younger children (ages < 11 years), indicating the need for careful interpretation of self-reported HRQoL using the current version of the EQ-5D-Y-3L in this population.https://doi.org/10.1186/s12955-024-02320-4Child self-report validityPreference-based HRQoL measureRetrospective think-aloud approachMixed methods studyParent–child agreement
spellingShingle Diana Khanna
Kiri Lay
Jyoti Khadka
Christine Mpundu-Kaambwa
Julie Ratcliffe
in collaboration with the Quality of Life in Kids: Key evidence to strengthen decisions in Australia (QUOKKA) project team
How do children understand and respond to the EQ-5D-Y-3L? A mixed methods study in a community-based sample of 6–12-year-olds
Health and Quality of Life Outcomes
Child self-report validity
Preference-based HRQoL measure
Retrospective think-aloud approach
Mixed methods study
Parent–child agreement
title How do children understand and respond to the EQ-5D-Y-3L? A mixed methods study in a community-based sample of 6–12-year-olds
title_full How do children understand and respond to the EQ-5D-Y-3L? A mixed methods study in a community-based sample of 6–12-year-olds
title_fullStr How do children understand and respond to the EQ-5D-Y-3L? A mixed methods study in a community-based sample of 6–12-year-olds
title_full_unstemmed How do children understand and respond to the EQ-5D-Y-3L? A mixed methods study in a community-based sample of 6–12-year-olds
title_short How do children understand and respond to the EQ-5D-Y-3L? A mixed methods study in a community-based sample of 6–12-year-olds
title_sort how do children understand and respond to the eq 5d y 3l a mixed methods study in a community based sample of 6 12 year olds
topic Child self-report validity
Preference-based HRQoL measure
Retrospective think-aloud approach
Mixed methods study
Parent–child agreement
url https://doi.org/10.1186/s12955-024-02320-4
work_keys_str_mv AT dianakhanna howdochildrenunderstandandrespondtotheeq5dy3lamixedmethodsstudyinacommunitybasedsampleof612yearolds
AT kirilay howdochildrenunderstandandrespondtotheeq5dy3lamixedmethodsstudyinacommunitybasedsampleof612yearolds
AT jyotikhadka howdochildrenunderstandandrespondtotheeq5dy3lamixedmethodsstudyinacommunitybasedsampleof612yearolds
AT christinempundukaambwa howdochildrenunderstandandrespondtotheeq5dy3lamixedmethodsstudyinacommunitybasedsampleof612yearolds
AT julieratcliffe howdochildrenunderstandandrespondtotheeq5dy3lamixedmethodsstudyinacommunitybasedsampleof612yearolds
AT incollaborationwiththequalityoflifeinkidskeyevidencetostrengthendecisionsinaustraliaquokkaprojectteam howdochildrenunderstandandrespondtotheeq5dy3lamixedmethodsstudyinacommunitybasedsampleof612yearolds