Parent-child discrepancies in health-related quality of life of children and adolescents with ME/CFS (Ekberg et al., 2021)

Pyrrhus

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Parent-child discrepancies in health-related quality of life of children and adolescents with ME/CFS (Ekberg et al., 2021)
Krista M. Ekberg, Chelsea Torres & Leonard A. Jason
https://link.springer.com/article/10.1007/s11136-021-02919-w

Excerpt:
Ekberg et al 2021 said:
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.
 

Diwi9

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@Pyrrhus - Were you able to access the full article? I find this study sort of fascinating and would love to read it. If you've read it, do you have any insights?
 

Diwi9

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@Pyrrhus - Well, shucks...just the abstract comes up for me when I click the link. I still need to pay $40 for the full paper. Anyway, I was curious to see where there were reporting discrepancies.