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The level of agreement between child self-reports and parent proxy-reports of health-related quality of life in boys with Duchenne muscular dystrophy

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Abstract

Purpose

To investigate the level of agreement between child self-reports and parent proxy-reports of the health-related quality of life (HRQoL) in boys with Duchenne muscular dystrophy (DMD) using both classical test theory (CTT) and Rasch analysis.

Methods

A total of 63 boys with DMD and their parents completed the pediatric quality of life inventory version 4.0 child self-report and parent proxy-report of HRQoL, respectively. The data were analyzed using both the CTT (scale-score level) and Rasch analysis (item-level).

Results

The intraclass correlation coefficient (ICC, scale-score level) between children and parents showed good to moderate agreement, although parents consistently underestimated their child HRQoL. In Rasch analysis (item-level), 1 out of 8 items was significantly different between children and parents in the physical health scale. Also, 3 out of 15 items were significantly different between those two groups in the psychosocial health scale.

Conclusions

By applying both scale-score and item-level analyses, our study seeks to broaden the understanding of the discrepancy of the ratings between child self-reports and parent proxy-reports. The findings could provide further information about the decision-making process when selecting therapy and care programs.

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References

  1. Emery, A. E. (1991). Population frequencies of inherited neuromuscular diseases: A world survey. Neuromuscular Disorders, 1(1), 19–29.

    Google Scholar 

  2. Mendell, J. R., Shilling, C., Leslie, N. D., Flanigan, K. M., al-Dahhak, R., Gastier-Foster, J., et al. (2012). Evidence-based path to newborn screening for Duchenne muscular dystrophy. Annals of Neurology, 71(3), 304–313. doi:10.1002/Ana.23528.

    Article  CAS  PubMed  Google Scholar 

  3. Cyrulnik, S. E., Fee, R. J., Batchelder, A., Kiefel, J., Goldstein, E., & Hinton, V. J. (2008). Cognitive and adaptive deficits in young children with Duchenne muscular dystrophy (DMD). Journal of the International Neuropsychological Society, 14(5), 853–861. doi:10.1017/S135561770808106X.

    Article  PubMed  Google Scholar 

  4. Chamberlain, J. S., & Rando, T. A. (2006). Duchenne muscular dystrophy: Advances in therapeutics. New York: Taylor & Francis Group.

    Google Scholar 

  5. Nereo, N. E., Fee, R. J., & Hinton, V. J. (2003). Parental stress in mothers of boys with Duchenne muscular dystrophy. Journal of Pediatric Psychology, 28(7), 473–484. doi:10.1093/jpepsy/jsg038.

    Article  PubMed Central  PubMed  Google Scholar 

  6. Bray, P., Bundy, A. C., Ryan, M. M., North, K. N., & Everett, A. (2010). Health-related quality of life in boys with Duchenne muscular dystrophy: Agreement between parents and their sons. Journal of Child Neurology, 25(10), 1188–1194. doi:10.1177/0883073809357624.

    Article  PubMed  Google Scholar 

  7. WHOQOL Group. (1993). Study protocol for the World Health Organization project to develop a quality of life assessment instrument (WHOQOL). Quality of Life Research, 2(2), 153–159.

    Article  Google Scholar 

  8. Kaplan, R. M. (1985). Quality of life measurement. In P. Karoly (Ed.), Measurement strategies in health psychology. New York, NY: Wiley.

  9. 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(6), 895–913. doi:10.1007/s11136-008-9350-5.

    Article  PubMed  Google Scholar 

  10. Sherifali, D., & Pinelli, J. (2007). Parent as proxy reporting: Implications and recommendations for quality of life research. Journal of Family Nursing, 13(1), 83–98. doi:10.1177/1074840706297789.

    Article  PubMed  Google Scholar 

  11. von Essen, L. (2004). Proxy ratings of patient quality of life: Factors related to patient-proxy agreement. Acta Oncologica, 43(3), 229–234. doi:10.1080/02841860410029357.

    Google Scholar 

  12. 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.

    Article  CAS  PubMed  Google Scholar 

  13. Eiser, C., & Morse, R. (2001). Quality-of-life measures in chronic diseases of childhood. Health Technology Assessment, 5(4), 1–157.

    CAS  PubMed  Google Scholar 

  14. De Civita, M., Regier, D., Alamgir, A. H., Anis, A. H., Fitzgerald, M. J., & Marra, C. A. (2005). Evaluating health-related quality-of-life studies in paediatric populations: Some conceptual, methodological and developmental considerations and recent applications. Pharmacoeconomics, 23(7), 659–685.

    Article  PubMed  Google Scholar 

  15. McClellan, C. B., Schatz, J., Sanchez, C., & Roberts, C. W. (2008). Validity of the pediatric quality of life inventory for youth with sickle cell disease. Journal of Pediatric Psychology, 33(10), 1153–1162. doi:10.1093/jpepsy/jsn036.

    Article  PubMed  Google Scholar 

  16. White-Koning, M., Arnaud, C., Dickinson, H. O., Thyen, U., Beckung, E., Fauconnier, J., et al. (2007). Determinants of child–parent agreement in quality-of-life reports: A European study of children with cerebral palsy. Pediatrics, 120(4), E804–E814. doi:10.1542/peds.2006-3272.

    Article  PubMed  Google Scholar 

  17. Portney, L. G., & Watkins, M. P. (2009). Foundations of clinical research: Applications to practice (3rd ed.). New Jersey: Pearson Education.

    Google Scholar 

  18. Bond, T. B., & Fox, C. M. (2007). Applying the Rasch model. New York: Taylor & Francis Group.

    Google Scholar 

  19. Cremeens, J., Eiser, C., & Blades, M. (2006). Factors influencing agreement between child self-report and parent proxy-reports on the pediatric quality of life inventory 4.0 (PedsQL) generic core scales. Health and Quality of Life Outcomes, 4, 58. doi:10.1186/1477-7525-4-58.

    Article  PubMed Central  PubMed  Google Scholar 

  20. Varni, J. W., Seid, M., & Rode, C. A. (1999). The PedsQL (TM): Measurement model for the pediatric quality of life inventory. Medical Care, 37(2), 126–139.

    Article  CAS  PubMed  Google Scholar 

  21. Varni, J. W., Seid, M., & Kurtin, P. S. (2001). PedsQL (TM) 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(8), 800–812.

    Article  CAS  PubMed  Google Scholar 

  22. Sheffler, L. C., Hanley, C., Bagley, A., Molitor, F., & James, M. A. (2009). Comparison of self-reports and parent proxy-reports of function and quality of life of children with below-the-elbow deficiency. Journal of Bone and Joint Surgery-American, 91A(12), 2852–2859. doi:10.2106/Jbjs.H.01108.

    Article  Google Scholar 

  23. Wright, B., Linacre, J., Gustafson, J., & Martin-Löf, P. (1994). Reasonable mean-square fit values. Rasch Measurement Transactions, 8(3), 370.

    Google Scholar 

  24. Linacre, J. M. (2002). Optimizing rating scale category effectiveness (Comparative Study). Journal of Applied Measurement, 3(1), 85–106.

    PubMed  Google Scholar 

  25. Fayers, P. M. (2008). The scales were highly correlated: P = 0.0001. Quality of Life Research, 17(5), 651–652. doi:10.1007/s11136-008-9351-4.

    Article  PubMed  Google Scholar 

  26. Shrout, P. E., & Fleiss, J. L. (1979). Intraclass correlations: Uses in assessing rater reliability. Psychological Bulletin, 86(2), 420–428. doi:10.1037//0033-2909.86.2.420.

  27. van der Linden, F. A., Kragt, J. J., Hobart, J. C., Klein, M., Thompson, A. J., van der Ploeg, H. M., et al. (2006). Proxy measurements in multiple sclerosis: Agreement between patients and their partners on the impact of multiple sclerosis in daily life. Journal of Neurology, Neurosurgery and Psychiatry, 77(10), 1157–1162. doi:10.1136/jnnp.2006.090795.

    Article  PubMed Central  PubMed  Google Scholar 

  28. Chambers, L. (2004). Inclusive education for children with muscular Dystrophy and other neuromuscular conditions: Guidance for primary and secondary schools. http://www.muscular-dystrophy.org/assets/0002/2928/Inclusive_Education.pdf. Accessed April 29 2013.

  29. Sprangers, M. A. (2002). Quality-of-life assessment in oncology: Achievements and challenges. Acta Oncologica, 41(3), 229–237.

    Article  PubMed  Google Scholar 

  30. Davis, E., Nicolas, C., Waters, E., Cook, K., Gibbs, L., Gosch, A., et al. (2007). Parent-proxy and child self-reported health-related quality of life: Using qualitative methods to explain the discordance. Quality of Life Research, 16(5), 863–871. doi:10.1007/s11136-007-9187-3.

    Article  PubMed  Google Scholar 

  31. Linacre, J. M. (1994). Sample size and item calibration stability. Rasch Measurement Transactions, 7(4), 328.

    Google Scholar 

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Acknowledgments

The project described here was supported by Award Number K01HD064778 from the Eunice Kennedy Shriver National Institute of Child Health and Human Development. The content is solely the responsibility of the authors and does not necessarily represent the official views of the Eunice Kennedy Shriver National Institute of Child Health and Human Development or the National Institutes of Health.

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Authors and Affiliations

  1. Department of Occupational Therapy, University of Florida, PO BOX 100164, Gainesville, FL, 32610-0164, USA

    Yoonjeong Lim

  2. Department of Occupational Therapy, Medical University of South Carolina, Charleston, SC, 29425-0700, USA

    Craig Velozo

  3. Department of Occupational Therapy, University of Pittsburgh, Pittsburgh, PA, 15260, USA

    Roxanna M. Bendixen

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  1. Yoonjeong Lim
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  2. Craig Velozo
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  3. Roxanna M. Bendixen
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Correspondence to Yoonjeong Lim.

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Lim, Y., Velozo, C. & Bendixen, R.M. The level of agreement between child self-reports and parent proxy-reports of health-related quality of life in boys with Duchenne muscular dystrophy. Qual Life Res 23, 1945–1952 (2014). https://doi.org/10.1007/s11136-014-0642-7

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