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

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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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Data availability

Information about the data set associated with this paper can be found by contacting Dr. Leonard A. Jason at ljason@depaul.edu.

Code availability

All analyses were conducted using SPSS 25.

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Funding

Funding was provided by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (Grant No. HD072208).

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Authors and Affiliations

  1. Center for Community Research, DePaul University, 990 W. Fullerton Ave., Suite 3100, Chicago, IL, 60614, USA

    Krista M. Ekberg, Chelsea Torres & Leonard A. Jason

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  1. Krista M. Ekberg
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  2. Chelsea Torres
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  3. Leonard A. Jason
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Contributions

KE, CT, and LAJ all assisted with material preparation, data collection, and analysis. The first draft of the manuscript was written by KE and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Leonard A. Jason.

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Conflict of interest

The authors have no relevant financial or non-financial interests to disclose.

Ethical approval

The questionnaires and methodology for this study were approved by the Institutional Review Board at DePaul University (LJ071012PSY).

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Informed consent was obtained from all individual participants included in the study.

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Participants signed informed consent regarding publishing their data.

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Ekberg, K.M., Torres, C. & Jason, L.A. Parent-child discrepancies in health-related quality of life of children and adolescents with myalgic encephalomyelitis/chronic fatigue syndrome. Qual Life Res 30, 3443–3448 (2021). https://doi.org/10.1007/s11136-021-02919-w

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