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Gepubliceerd in: Quality of Life Research 12/2021

30-06-2021

Parent-child discrepancies in health-related quality of life of children and adolescents with myalgic encephalomyelitis/chronic fatigue syndrome

Auteurs: Krista M. Ekberg, Chelsea Torres, Leonard A. Jason

Gepubliceerd in: Quality of Life Research | Uitgave 12/2021

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Abstract

Purpose

Few studies have examined parent-child discrepancies on self-report measures of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) symptomatology and health-related quality of life (HRQOL). The aim of this study was to investigate parent-child reporting discrepancies between a pediatric sample of diagnosed patients with ME/CFS and controls to better understand the role of children and adolescent reporting.

Method

Data for this study were drawn from a community-based epidemiological study of pediatric ME/CFS in the Chicagoland area. A total of 147 parent-child dyads (75 pairs with ME/CFS and 72 control pairs) completed measures assessing HRQOL and ME/CFS symptomatology. At the individual level, agreement was assessed using intra-class correlation coefficient (ICC) scores. Agreement was measured at the group level by a comparison of means using paired-sample t-tests.

Results

Intra-class correlations revealed varied agreement in both parent-child pairs of children who met at least one case definition of ME/CFS and in parent-child pairs in the control group.

Conclusion

The current study provides support for the existence of discrepancies between parent-child reports of ME/CFS symptomatology and HRQOL measures. Limitations and future directions are discussed.

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Metagegevens
Titel
Parent-child discrepancies in health-related quality of life of children and adolescents with myalgic encephalomyelitis/chronic fatigue syndrome
Auteurs
Krista M. Ekberg
Chelsea Torres
Leonard A. Jason
Publicatiedatum
30-06-2021
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 12/2021
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-021-02919-w