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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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Literatuur
1.
go back to reference Jason, L. A., Jordan, K., Mike, T., Bell, D. S., Lapp, C., Torres-Harding, S., Rowe, K., Gurwitt, A., De Meirleir, K., & Van Hoof, E. L. S. (2006). A pediatric case definition for myalgic encephalomyelitis and chronic fatigue syndrome. Journal of Chronic Fatigue Syndrome, 13(2–3), 1–44. https://doi.org/10.1300/J092v13n02_01CrossRef Jason, L. A., Jordan, K., Mike, T., Bell, D. S., Lapp, C., Torres-Harding, S., Rowe, K., Gurwitt, A., De Meirleir, K., & Van Hoof, E. L. S. (2006). A pediatric case definition for myalgic encephalomyelitis and chronic fatigue syndrome. Journal of Chronic Fatigue Syndrome, 13(2–3), 1–44. https://​doi.​org/​10.​1300/​J092v13n02_​01CrossRef
2.
go back to reference Jason, L. A., Sunnquist, M., Brown, A., Furst, J., Cid, M., Farietta, J., Kot Bloomer, C., Nicholson, L., Williams, Y., Jantke, R., Newton, J. L. B., & Strand, E. (2015). Factor analysis of the DePaul symptom questionnaire: Identifying core domains. Journal of Neurobiology, 1, 1–22. https://doi.org/10.16966/2379-7150.114CrossRef Jason, L. A., Sunnquist, M., Brown, A., Furst, J., Cid, M., Farietta, J., Kot Bloomer, C., Nicholson, L., Williams, Y., Jantke, R., Newton, J. L. B., & Strand, E. (2015). Factor analysis of the DePaul symptom questionnaire: Identifying core domains. Journal of Neurobiology, 1, 1–22. https://​doi.​org/​10.​16966/​2379-7150.​114CrossRef
11.
go back to reference Knight, S. J., Harvey, A., Hennel, S., Lubitz, L., Rowe, K., Reveley, C., Dean, N., Clarke, C., & Scheinberg, A. (2015). Measuring quality of life and fatigue in adolescents with chronic fatigue syndrome: Estimates of feasibility, internal consistency and parent-adolescent agreement of the PedsQLTM. Fatigue Biomedicine, Health and Behavior, 3(4), 220–234. https://doi.org/10.1080/21641846.2015.1090816CrossRef Knight, S. J., Harvey, A., Hennel, S., Lubitz, L., Rowe, K., Reveley, C., Dean, N., Clarke, C., & Scheinberg, A. (2015). Measuring quality of life and fatigue in adolescents with chronic fatigue syndrome: Estimates of feasibility, internal consistency and parent-adolescent agreement of the PedsQLTM. Fatigue Biomedicine, Health and Behavior, 3(4), 220–234. https://​doi.​org/​10.​1080/​21641846.​2015.​1090816CrossRef
13.
go back to reference Rowe, P. C., Underhill, R. A., Friedman, K. J., Gurwitt, A., Medow, M. S., Speight, N., Stewart, J. M., Vallings, R., & Rowe, K. S. (2017). Myalgic encephalomyelitis/chronic fatigue syndrome diagnosis and management in young people: A primer. Frontiers in Pediatrics, 5, 1–44. https://doi.org/10.3389/fped.2017.00121CrossRef Rowe, P. C., Underhill, R. A., Friedman, K. J., Gurwitt, A., Medow, M. S., Speight, N., Stewart, J. M., Vallings, R., & Rowe, K. S. (2017). Myalgic encephalomyelitis/chronic fatigue syndrome diagnosis and management in young people: A primer. Frontiers in Pediatrics, 5, 1–44. https://​doi.​org/​10.​3389/​fped.​2017.​00121CrossRef
14.
go back to reference Haywood, K. L., Collin, S. M., & Crawley, E. (2014). Assessing severity of illness and outcomes of treatment in children with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): A systematic review of patient-reported outcome measures (PROMs). Child Care and Health Development. https://doi.org/10.1111/cch.12135CrossRef Haywood, K. L., Collin, S. M., & Crawley, E. (2014). Assessing severity of illness and outcomes of treatment in children with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): A systematic review of patient-reported outcome measures (PROMs). Child Care and Health Development. https://​doi.​org/​10.​1111/​cch.​12135CrossRef
17.
go back to reference Vetter, T. R., Bridgewater, C. L., & McGwin Jr., G. (2012). An observational study of patient versus parental perceptions of health-related quality of life in children and adolescents with a chronic pain condition: Who should the clinician believe? Health and Quality of Life Outcomes, 10(1), 85–96. Retrieved 26 July 2019, from http://www.hqlo.com/content/10/1/85 Vetter, T. R., Bridgewater, C. L., & McGwin Jr., G. (2012). An observational study of patient versus parental perceptions of health-related quality of life in children and adolescents with a chronic pain condition: Who should the clinician believe? Health and Quality of Life Outcomes, 10(1), 85–96. Retrieved 26 July 2019, from http://​www.​hqlo.​com/​content/​10/​1/​85
18.
go back to reference Le Coq, E. M., Boeke, A. J. P., Bezemer, P. D., Colland, V. T., & Eijk, J. H. M. (2000). Which source should we use to measure quality of life in children with asthma: The children themselves or their parents?. Quality of Life Research, 9(6), 625–636.CrossRef Le Coq, E. M., Boeke, A. J. P., Bezemer, P. D., Colland, V. T., & Eijk, J. H. M. (2000). Which source should we use to measure quality of life in children with asthma: The children themselves or their parents?. Quality of Life Research, 9(6), 625–636.CrossRef
19.
go back to reference Pickard, A. S., & Knight, S. J. (2005). Proxy evaluation of health-related quality of life: A conceptual framework for understanding multiple proxy perspectives. Medical Care, 43(5), 493–499.CrossRef Pickard, A. S., & Knight, S. J. (2005). Proxy evaluation of health-related quality of life: A conceptual framework for understanding multiple proxy perspectives. Medical Care, 43(5), 493–499.CrossRef
20.
go back to reference Eiser, C., & Morse, R. (2001). Can parents rate their child’s health-related quality of life? Results of a systematic review. Quality of Life Research, 10(4), 347–357.CrossRef Eiser, C., & Morse, R. (2001). Can parents rate their child’s health-related quality of life? Results of a systematic review. Quality of Life Research, 10(4), 347–357.CrossRef
21.
go back to reference Haney, E., Beth Smith, M. E., McDonagh, M., Pappas, M., Daeges, M., Wasson, N., & Nelson, H. D. (2015). Diagnostic methods for myalgic encephalomyelitis/chronic fatigue syndrome: A systematic review for a national institutes of health pathways to prevention workshop. Annals of Internal Medicine, 1(62), 834–840. https://doi.org/10.7326/M15-0443CrossRef Haney, E., Beth Smith, M. E., McDonagh, M., Pappas, M., Daeges, M., Wasson, N., & Nelson, H. D. (2015). Diagnostic methods for myalgic encephalomyelitis/chronic fatigue syndrome: A systematic review for a national institutes of health pathways to prevention workshop. Annals of Internal Medicine, 1(62), 834–840. https://​doi.​org/​10.​7326/​M15-0443CrossRef
28.
go back to reference Landgraf, J. M., Abetz, L., & Ware, J. E. (1996). The child health questionnaire (CHQ): A user’s manual. Boston, MA: The Health Institute, New England Medical Center. Landgraf, J. M., Abetz, L., & Ware, J. E. (1996). The child health questionnaire (CHQ): A user’s manual. Boston, MA: The Health Institute, New England Medical Center.
32.
go back to reference IBM Corp. Released 2017. IBM SPSS Statistics for Windows, Version 25.0. Armonk, NY: IBM Corp. IBM Corp. Released 2017. IBM SPSS Statistics for Windows, Version 25.0. Armonk, NY: IBM Corp.
35.
go back to reference Bland, J. M., & Altman, D. G. (1986). Statistical methods for assessing agreement between two methods of clinical measurement. Lancet, 1, 307–310.CrossRef Bland, J. M., & Altman, D. G. (1986). Statistical methods for assessing agreement between two methods of clinical measurement. Lancet, 1, 307–310.CrossRef
39.
go back to reference Rajmil, L., Rodríguez López, A., López-Aguilà, S., & Alonso, J. (2013). Parent-child agreement on health-related quality of life (HRQOL): A longitudinal study. Health and Quality of Life Outcomes, 11(101). Retrieved 16 Aug 2019, from http://www.hqlo.com/content/11/1/ Rajmil, L., Rodríguez López, A., López-Aguilà, S., & Alonso, J. (2013). Parent-child agreement on health-related quality of life (HRQOL): A longitudinal study. Health and Quality of Life Outcomes, 11(101). Retrieved 16 Aug 2019, from http://​www.​hqlo.​com/​content/​11/​1/​
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

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