Parent-child discrepancies in health-related quality of life of children and adolescents with [ME/CFS], 2021, Ekberg, Torres and Jason

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.

Paywall, https://link.springer.com/article/10.1007/s11136-021-02919-w

 

As a child of parents who had a horror of what they thought was attention-seeking, I was lucky that "normal" childhood diseases (e.g. mumps, measles, rubella, chicken pox, tonsillitis are the ones I remember) in my youth involved swelling or spots or a high temperature that were easily seen or tested with a thermometer. The first time I got a severe health problem that was invisible my parents nearly killed me.

If I had had ME/CFS as a child my parents would have reported that I was attention-seeking and lazy. Although parental attitudes have no doubt changed to some extent in the decades since I was a child, I wonder if these researchers take it for granted that adults are more reliable than children as reporters of health/illness/symptoms/quality of life in a child? I certainly wouldn't believe that.

 

The fulltext is available to read here free:
https://www.researchgate.net/profil...ncephalomyelitis-chronic-fatigue-syndrome.pdf