Abstract
Purpose
To compare adolescent self-reports with two types of parent reports regarding the quality of life (QoL) of adolescents with Autism Spectrum Disorders (ASDs): (1) standard parent reports, in which parents give their own perspective on their adolescent child’s QoL and (2) parent proxy reports, in which parents indicate how they believe their adolescent child would answer.
Methods
Thirty-nine adolescents with ASDs and their parents completed the Pediatric Quality of Life Inventory (PedsQL). Parents completed the form twice, once using standard parent report instructions and again using proxy instructions. Concordance among the three reports was evaluated via Pearson correlations. Differences in means were assessed via ANOVAs.
Results
Correlations were higher between parent proxy reports and adolescent self-reports than between standard parent reports and adolescent self-reports. In addition, average scores on the parent proxy reports were closer to adolescents’ self-reports than were average scores on the standard parent reports.
Conclusions
These results demonstrate that parents of adolescents with ASDs have different opinions about their children’s quality of life than their children do, and that they are aware of these differences. If the goal is to reduce discrepancy between the reports of parents and their adolescent children with ASDs, it may be advisable to ask parents to report on their child’s QoL as they believe their children would.
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Abbreviations
- QoL:
-
Quality of life
- ASD:
-
Autism Spectrum Disorders
- PedsQL:
-
Pediatric Quality of Life Inventory, version 4.0
References
Matza, L. S., Swensen, A. R., Flood, E. M., Secnik, K., & Leidy, N. K. (2004). Assessment of health-related quality of life in children: A review of conceptual, methodological, and regulatory issues. Value in Health, 7, 79–92.
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, 347–357.
Volkmar, F. G., Lord, C., Bailey, A., Schultz, R. T., & Klin, A. (2004). Autism and pervasive developmental disorders. Journal of Child Psychology and Psychiatry and Allied Disciplines, 45(1), 135–170.
Shipman, D. L., Sheldrick, R. C., & Perrin, E. C. (2011). Quality of life in adolescents with autism spectrum disorders: Reliability and validity of self-reports. Journal of Developmental Behavioral Pediatrics, 32(2), 85–89.
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.
Bastiaansen, D., Koot, H. M., Ferdinand, R. F., & Veerhuls, F. C. (2004). Quality of life in children with psychiatric disorders: self-, parent, and clinician report. Journal of the American Academy of Child and Adolescent Psychiatry, 43(2), 221–230.
Chang, P. C., & Yeh, C. H. (2005). Agreement between child self-report and parent proxy-report to evaluate quality of life in children with cancer. Psycho-Oncology, 14(2), 125–134.
Varni, J. W., Seid, M., & Rode, C. A. (1999). The PedsQL: Measurement model for the pediatric quality of life inventory. Medical Care, 37, 126–139.
Varni, J. W., Burwinkle, T. M., Seid, M., & Skarr, D. (2003). PedsQL 4.0 as a pediatric population health measure: Feasibility, reliability and validity. Ambulatory Pediatrics, 3, 329–341.
Varni, J. W., Limbers, C. A., & Burwinkle, T. M. (2007). Parent proxy-report of their children’s health-related qualities of life: An analysis of 13,878 parents’ reliability and validity across age subgroups using the PedsQL 4.0 Generic Core Scales. Health and Quality of Life Outcomes, 5, 2.
De Los Reyes, A., & Kazdin, A. E. (2005). Informant discrepancies in the assessment of childhood psychopathology: A critical review, theoretical framework, and recommendations for further study. Psychological Bulletin, 131, 483–509.
Acknowledgments
We are indebted to Maria Mayoral for her careful and persistent work in recruiting families and administering the protocol.
Conflict of interest
The authors have no conflicts of interest to report.
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Sheldrick, R.C., Neger, E.N., Shipman, D. et al. Quality of life of adolescents with autism spectrum disorders: concordance among adolescents’ self-reports, parents’ reports, and parents’ proxy reports. Qual Life Res 21, 53–57 (2012). https://doi.org/10.1007/s11136-011-9916-5
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DOI: https://doi.org/10.1007/s11136-011-9916-5