Parent-child discrepancy in the assessment of health- related quality of life using the EQ-5D-Y questionnaire

Sousa, Miguel Á Perez; Sánchez-Toledo, Pedro Rufino Olivares; Gusi, Narcís

doi:10.5546/aap.2017.eng.541

Cited by 13 publications

(16 citation statements)

References 27 publications

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“…In addition, there may be some discrepancies between children’s self-report and proxy reports e.g. by parents [ 11 – 14 ].…”

Section: Introductionmentioning

confidence: 99%

Health-related quality of life by allergy symptoms in elementary school students

Kim

2018

Health Qual Life Outcomes

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BackgroundGlobally, allergic diseases are very common in childhood and may affect children’s quality of life. This study aimed to explore health-related quality of life of elementary school students with allergy symptoms using the EQ-5D-Y and to examine the validity and feasibility of the EQ-5D-Y.MethodsThe study subjects were the students within 50 elementary schools which voluntarily participated in research project. In this sample population, the EQ-5D-Y questionnaire was self-administered by the students, and demographic and health information were collected from the student’s parents. The parents’ information was used to investigate the proportion of students with allergic symptoms (wheezing, runny or blocked nose, and itchy rash) in the past 12 months. In addition, we analyzed the correlation of symptom reporting and EQ-5D-Y including EQ-VAS.ResultsThe overall return was 9117 responses, of which 198 (2.2%) lacked responses on the EQ-5D-Y dimension and 1258 (13.8%) on the VAS score. There were significant differences in symptom reporting in all EQ-5D-Y dimensions between groups with or without allergic symptoms. Particularly, there was a large difference in reporting rates in ‘having pain or discomfort’ and ‘feeling worried, sad or unhappy’ dimensions. As the number of allergic symptoms increased, in all dimensions also the problem reporting rate tended to increase.ConclusionsAs expected, the presence of allergic symptoms is inversely correlated with the quality of life of children. The EQ-5D-Y instrument proved to be useful in terms of feasibility and construct validity in assessing the quality of life of Korean elementary school students.

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“…In addition, there may be some discrepancies between children’s self-report and proxy reports e.g. by parents [ 11 – 14 ].…”

Section: Introductionmentioning

confidence: 99%

Health-related quality of life by allergy symptoms in elementary school students

Kim

2018

Health Qual Life Outcomes

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“…Six studies that reported the ICCs for EQ VAS scores were excluded as there is some debate in the literature about VAS scores and the extent to which they can be interpreted as utilities [46,47,[51][52][53][54]. Kappa statistics for the domainlevel agreement were reported for 10 studies employing HUI2 and 3 (five studies) [34,[36][37][38][39]41] and EQ-5D-Y (five studies) [35,40,46,47,51]. However, since four of five studies using EQ-5D-Y did not report the standard errors of the kappa values or the percentage agreement values, the EQ-5D measure was excluded from the domain-level metaanalysis of agreement.…”

Section: Meta-analysis Resultsmentioning

confidence: 99%

“…The age range for children in the included studies was between 5 and 18 years. Eight studies reported children younger than 8 years of age completing a self-report questionnaire either independently or with some assistance [ 35 – 37 , 40 , 42 – 46 ].…”

Section: Resultsmentioning

confidence: 99%

“…Details of the included studies reporting the domain-level agreement statistics are presented in Table 5 . The domain-level agreement was reported for 17 studies (40 samples), of which 10 studies used Cohen’s kappa [ 34 – 41 , 46 , 47 , 51 ], three studies used ICC [ 42 , 43 , 49 ], and two used Gwet’s AC1 [ 53 , 54 ]. No study reported the domain-level agreement for the CHU9D and QWB measures.…”

Section: Resultsmentioning

confidence: 99%

“…The sample size of the dyad ranged from 11 [45] to 654 [47]. From a total of 26 studies (58 samples), 12 studies reported only the ICCs [34,42,43,[46][47][48][49][50][51][52][53][54], and three studies reported ICCs alongside the correlation coefficients [36,37,55,56]. Six studies reported only Spearman's rho [45,[57][58][59][60][61], whereas four studies reported only Pearson's r [44,[62][63][64].…”

Section: Proxy/child Agreementmentioning

confidence: 99%

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Are We Agreed? Self- Versus Proxy-Reporting of Paediatric Health-Related Quality of Life (HRQoL) Using Generic Preference-Based Measures: A Systematic Review and Meta-Analysis

Khanna

Khadka²,

Lay³

et al. 2022

PharmacoEconomics

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Objective The aim of this study was to examine the level of agreement between self-and proxy-reporting of health-related quality of life (HRQoL) in children (under 18 years of age) using generic preference-based measures. Methods A systematic review of primary studies that reported agreement statistics for self and proxy assessments of overall and/or dimension-level paediatric HRQoL using generic preference-based measures was conducted. Where available, data on intraclass correlation coefficients (ICCs) were extracted to summarise overall agreement levels, and Cohen's kappa was used to describe agreement across domains. A meta-analysis was also performed to synthesise studies and estimate the level of agreement between self-and proxy-reported paediatric overall and domain-level HRQoL. Results Of the 30 studies included, 25 reported inter-rater agreement for overall utilities, while 17 reported domain-specific agreement. Seven generic preference-based measures were identified as having been applied: Health Utilities Index (HUI) Mark 2 and 3, EQ-5D measures, Child Health Utility 9 Dimensions (CHU9D), and the Quality of Well-Being (QWB) scale. A total of 45 dyad samples were included, with a total pooled sample of 3084 children and 3300 proxies. Most of the identified studies reported a poor inter-rater agreement for the overall HRQoL using ICCs. In contrast to more observable HRQoL domains relating to physical health and functioning, the inter-rater agreement was low for psychosocial-related domains, e.g., 'emotion' and 'cognition' attributes of both HUI2 and HUI3, and 'feeling worried, sad, or unhappy' and 'having pain or discomfort' domains of the EQ-5D. Parents demonstrated a higher level of agreement with children relative to health professionals. Child self-and proxy-reports of HRQoL showed lower agreement in cancer-related studies than in non-cancerrelated studies. The overall ICC from the meta-analysis was estimated to be 0.49 (95% confidence interval 0.34-0.61) with poor inter-rater agreement. Conclusion This study provides evidence from a systematic review of studies reporting dyad assessments to demonstrate the discrepancies in inter-rater agreement between child and proxy reporting of overall and domain-level paediatric HRQoL using generic preference-based measures. Further research to drive the inclusion of children in self-reporting their own HRQoL wherever possible and limiting the reliance on proxy reporting of children's HRQoL is warranted.

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Hearing‐related quality of life in children and adolescents in rural Alaska

Hicks

Robler

Simmons

et al. 2022

Laryngoscope Investig Oto

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Objective: This study evaluated the Hearing Environments and Reflection on Quality of Life (HEAR-QL) questionnaire in rural Alaska, including an addendum crafted through community feedback to reflect the local context. The objectives were to assess whether HEAR-QL score was inversely correlated with hearing loss and middle ear disease in an Alaska Native population. Methods:The HEAR-QL questionnaires for children and adolescents were administered as part of a cluster randomized trial in rural Alaska from 2017 to 2019.Enrolled students completed an audiometric evaluation and HEAR-QL questionnaire on the same day. A cross-sectional evaluation of questionnaire data was utilized.Results: A total of 733 children (ages 7-12 years) and 440 adolescents (ages ≥13 years) completed the questionnaire. Median HEAR-QL scores were similar among children with and without hearing loss (Kruskal-Wallis, p = .39); however, adolescent HEAR-QL scores significantly decreased with increasing hearing loss (p < .001). Median HEAR-QL scores were significantly lower in both children (p = .02) and adolescents (p < .001) with middle ear disease compared with those without. In both children and adolescents, the addendum scores were strongly correlated with total HEAR-QL score (ρ Spearman = 0.72 and 0.69, respectively). Conclusions:The expected negative association between hearing loss and HEAR-QL score was observed in adolescents. However, there was significant variability that could not be explained by hearing loss, and further investigation is warranted. The expected negative association was not observed in children.HEAR-QL scores were associated with middle ear disease in both children and adolescents, making it potentially valuable in populations where the prevalence of ear infections is high.

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Parent-child discrepancy in the assessment of health- related quality of life using the EQ-5D-Y questionnaire

Cited by 13 publications

References 27 publications

Health-related quality of life by allergy symptoms in elementary school students

Health-related quality of life by allergy symptoms in elementary school students

Are We Agreed? Self- Versus Proxy-Reporting of Paediatric Health-Related Quality of Life (HRQoL) Using Generic Preference-Based Measures: A Systematic Review and Meta-Analysis

Hearing‐related quality of life in children and adolescents in rural Alaska

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