Top

Quality of Life Research

Tip

Swipe om te navigeren naar een ander artikel

Gepubliceerd in:

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

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.

vorige artikel An investigation of the effect of smartphone-based pain management application on pain intensity and the quality-of-life dimensions in adolescents with chronic pain: a cluster randomized parallel-controlled trial

volgende artikel Health-related quality of life in children with and without physical–mental multimorbidity

Alleen toegankelijk voor geautoriseerde gebruikers

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_01 CrossRef

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/10.16966/2379-7150.114 CrossRef

Crawley, E. M., Emond, A. M., & Sterne, J. A. C. (2011). Unidentified chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a major cause of school absence: Surveillance outcomes from school-based clinics. British Medical Journal Open. https://doi.org/10.1136/bmjopen-2011-000252 CrossRef

Josev, E. K., Jackson, M. L., & Knight, S. L. (2017). Sleep quality in adolescents with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). Journal of Clinical Sleep Medicine, 13(9), 1057–1066. https://doi.org/10.5664/jcsm.6722 CrossRefPubMedPubMedCentral

Torres-Harding, S. R., Jordan, K., Jason, L. A., & Arias, R. (2006). Psychosocial and physical impact of chronic fatigue in a community-based sample of children and adolescents. Journal of Chronic Fatigue Syndrome, 133(2), 55–74. https://doi.org/10.1300/J092v13n02_03 CrossRef

Walford, G. A., Nelson, W. M., & McCluskey, D. R. (1993). Fatigue, depression, and social adjustment in chronic fatigue syndrome. Archives of Disease in Childhood, 68, 384–388. https://doi.org/10.1136/adc.68.3.384 CrossRefPubMedPubMedCentral

Dowsett, E. G., & Colby, J. (1997). Chronic fatigue syndrome in children: Journal was wrong to criticize study in school children. British Medical Journal, 315(7113), 949. https://doi.org/10.1136/bmj.315.7113.949 CrossRefPubMedPubMedCentral

Frisen, A. (2007). Measuring health-related quality of life in adolescence. Acta Paediatrica, 96, 963–968. https://doi.org/10.1111/j.1651-2227.2007.00333.x CrossRefPubMed

Hvidberg, M. F., Brinth, L. S., Olesen, A. V., Petersen, K. D., & Ehlers, L. (2015). The health-related quality of life for patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). PLoS ONE. https://doi.org/10.1371/journal.pone.013242 CrossRef

10.

Winger, A., Kvarstein, G., Wyller, V. B., Ekstedt, M., Sulheim, D., Fagermoen, E., Småstuen, M. C., & Helseth, S. (2015). Health related quality of life in adolescents with chronic fatigue syndrome: A cross-sectional study. Health and Quality of Life Outcomes. https://doi.org/10.1186/s12955-015-0288-3 CrossRefPubMedPubMedCentral

11.

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 PedsQL ^TM. Fatigue Biomedicine, Health and Behavior, 3(4), 220–234. https://doi.org/10.1080/21641846.2015.1090816 CrossRef

12.

Jason, L. A., Katz, B., Sunnquist, M., Torres, C., Cotler, J., & Bhatia, S. (2020). The prevalence of pediatric myalgic encephalomyelitis/chronic fatigue syndrome in a community-based sample. Child and Youth Care Forum. https://doi.org/10.1007/s10566-019-09543-3 CrossRefPubMed

13.

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.2017.00121 CrossRef

14.

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.12135 CrossRef

15.

Palermo, T. M., Long, A. C., Lewandowski, A. S., Drotar, D., Quittner, A. L., & Walker, L. S. (2008). Evidence-based assessment of health-related quality of life and functional impairment in pediatric psychology. Journal of Pediatric Psychology, 33(9), 983–996. https://doi.org/10.1093/jpepsy/jsn038 CrossRefPubMedPubMedCentral

16.

Varni, J. W., Limbers, C. A., & Burwinkle, T. M. (2007). How young can children reliably and validly self-report their health-related quality of life? An analysis of 8591 children across age subgroups with the PedsQL 4.0 generic core scales. Health and Quality of Life Outcomes. https://doi.org/10.1186/1477-7525-5-1 CrossRefPubMedPubMedCentral

17.

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.

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.

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.

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.

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/M15-0443 CrossRef

22.

Holtzman, C. S., Fox, P. A., & Jason, L. A. (2018). Parent-child discrepancies in children with chronic fatigue syndrome-like symptomatology. DePaul Discoveries, 7(1). Retrieved 1 Feb 2018, from https://via.library.depaul.edu/depaul-disc/vol7/iss1/4

23.

Fukuda, K., Straus, S. E., Hickie, I., Sharpe, M. C., Dobbins, J. G., & Komaroff, A. (1994). The chronic fatigue syndrome: A comprehensive approach to its definition and study. International chronic fatigue syndrome study group. Annals of Internal Medicine, 121(12), 953–959. https://doi.org/10.7326/0003-4819-121-12-199412150-00009 CrossRefPubMed

24.

I.O.M. (Institute of Medicine). (2015). Beyond myalgic encephalomyelitis/chronic fatigue syndrome: Redefining an illness. Washington, DC: The National Academies. https://doi.org/10.1001/jama.2015.1346 CrossRef

25.

Jason, L. A., & Sunnquist, M. (2018). The development of the DePaul symptom questionnaire: Original, expanded, brief, and pediatric versions. Frontiers in Pediatrics. https://doi.org/10.3389/fped.2018.00330 CrossRefPubMedPubMedCentral

26.

Jason, L. A., So, S., Brown, A. A., Sunnquist, M., & Evans, M. (2015). Test-retest reliability of the DePaul symptom questionnaire. Fatigue, 3(1), 16–32. https://doi.org/10.1080/21641846.2014.978110 CrossRefPubMedPubMedCentral

27.

Murdock, K. W., Wang, X. S., Cleeland, C. S., Fagundes, C. P., & Vernon, S. D. (2016). The utility of patient-reported outcome measures among patients with myalgia encephalomyelitis/chronic fatigue syndrome. Quality of Life Research, 26(4), 913–921. https://doi.org/10.1007/s11136-016-1406-3 CrossRefPubMedPubMedCentral

28.

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.

29.

Vargus-Adams, J. (2005). Longitudinal use of the child health questionnaire in childhood cerebral palsy. Developmental Medicine and Child Neurology, 48, 343–347. https://doi.org/10.1017/S0012162206000752 CrossRef

30.

Konijnenberg, A. Y., Uiterwaal, C. S. P. M., Kimpen, J. L. L., van der Hoeven, J., Buitelaar, J. K., & de Graeff-Meeder, E. R. (2005). Children with unexplained chronic pain: Substantial impairment in everyday life. Archives of Disease in Childhood, 90(7), 680–686. https://doi.org/10.1136/adc.2004.056820 CrossRefPubMedPubMedCentral

31.

Asmussen, L., Olson, L. M., Grant, E. N., Landgraf, J. M., Fagan, J., & Weiss, K. B. (2000). Use of the child health questionnaire in a sample of moderate and low-income inner-city children with asthma. American Journal of Respiratory and Critical Care Medicine, 162, 1215–1221. https://doi.org/10.1164/ajrccm.162.4.2001067 CrossRefPubMed

32.

IBM Corp. Released 2017. IBM SPSS Statistics for Windows, Version 25.0. Armonk, NY: IBM Corp.

33.

Upton, P., Lawford, J., & Eiser, C. (2008). Parent-child agreement across child health-related quality of life instruments: A review of the literature. Quality of Life Research, 17, 895–913. https://doi.org/10.1007/s11136-008-9350-5 CrossRefPubMed

34.

McGraw, K. O., & Wong, S. P. (1996). Forming inferences about some intraclass correlation coefficients. Psychological Methods, 1(1), 30–46. https://doi.org/10.1037/1082-989X.1.1.30 CrossRef

35.

Bland, J. M., & Altman, D. G. (1986). Statistical methods for assessing agreement between two methods of clinical measurement. Lancet, 1, 307–310. CrossRef

36.

Eiser, C., & Varni, J. W. (2013). Health-related quality of life and symptom reporting: Similarities and differences between children and their parents. European Journal of Pediatrics, 172(10), 1299–1304. https://doi.org/10.1007/s00431-013-2049-9 CrossRefPubMed

37.

Upton, P., Eiser, C., Cheung, I., Hutchings, H. A., Jenney, M., Maddocks, A., Russell, I. T., & Williams, J. G. (2005). Measurement properties of the UK-English version of the pediatric quality of life inventory ^TM (PedsQL ^TM) 4.0 generic score scales. Health and Quality of Life Outcomes. https://doi.org/10.1186/1477-7525-3-22 CrossRefPubMedPubMedCentral

38.

Waters, E., Stewart-Brown, S., & Fitzpatrick, R. (2003). Agreement between adolescent self-report and parent reports of health and well-being: Results of an epidemiological study. Child Care and Health Development, 29(6), 501–509. https://doi.org/10.1046/j.1365-2214.2003.00370.x CrossRef

39.

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/

40.

Hay, D. F., Pawlby, S., Sharp, D., & Schmücker, G. (1999). Parents’ judgments about young children’s problems: Why mothers and fathers might disagree yet still predict later outcomes. Journal of Child Psychology and Psychiatry, 40, 1249–1258. https://doi.org/10.1111/1469-7610.00541 CrossRefPubMed

41.

Varni, J. W., Seid, M., & Kurtin, P. S. (2001). PedsQLTM 4.0: Reliability and validity of the pediatric quality of life inventory ^TM version 4.0 generic core scales in healthy and patient populations. Medical Care, 39, 800–812. https://doi.org/10.1097/00005650-200108000-00006 CrossRefPubMed

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

Mijn bibliotheek

Shop

Tips voor Mijn BSL

Bohn Stafleu van Loghum

Tip

Swipe om te navigeren naar een ander artikel

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

Abstract

Purpose

Method

Results

Conclusion

Mijn bibliotheek

Shop

Tips voor Mijn BSL

Bohn Stafleu van Loghum

Tip

Swipe om te navigeren naar een ander artikel

Deel dit onderdeel of sectie (kopieer de link)

Abstract

Purpose

Method

Results

Conclusion

Log in om toegang te krijgen

Andere artikelen Uitgave 12/2021

An investigation of the effect of smartphone-based pain management application on pain intensity and the quality-of-life dimensions in adolescents with chronic pain: a cluster randomized parallel-controlled trial

Health-related quality of life predicts length of hospital stay and survival rates for pediatric patients receiving allogeneic hematopoietic cell transplantation

In Sync Working Group response-shift

What should progress in response-shift research look like?

Diabetic foot disease: a systematic literature review of patient-reported outcome measures

Health-related quality of life in children with and without physical–mental multimorbidity