Skip to main content
Top
Gepubliceerd in: Quality of Life Research 1/2012

01-02-2012 | Brief Communication

Quality of life of adolescents with autism spectrum disorders: concordance among adolescents’ self-reports, parents’ reports, and parents’ proxy reports

Auteurs: R. Christopher Sheldrick, Emily N. Neger, Deborah Shipman, Ellen C. Perrin

Gepubliceerd in: Quality of Life Research | Uitgave 1/2012

Log in om toegang te krijgen
share
DELEN

Deel dit onderdeel of sectie (kopieer de link)

  • Optie A:
    Klik op de rechtermuisknop op de link en selecteer de optie “linkadres kopiëren”
  • Optie B:
    Deel de link per e-mail

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.
Literatuur
1.
go back to reference 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.PubMedCrossRef 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.PubMedCrossRef
2.
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, 347–357.PubMedCrossRef 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.PubMedCrossRef
3.
go back to reference 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.CrossRef 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.CrossRef
4.
go back to reference 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. 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.
5.
go back to reference 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.PubMedCrossRef 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.PubMedCrossRef
6.
go back to reference 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.PubMedCrossRef 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.PubMedCrossRef
7.
go back to reference 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.PubMedCrossRef 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.PubMedCrossRef
8.
go back to reference 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.PubMedCrossRef 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.PubMedCrossRef
9.
go back to reference 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.PubMedCrossRef 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.PubMedCrossRef
10.
go back to reference 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.PubMedCrossRef 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.PubMedCrossRef
11.
go back to reference 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.PubMedCrossRef 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.PubMedCrossRef
Metagegevens
Titel
Quality of life of adolescents with autism spectrum disorders: concordance among adolescents’ self-reports, parents’ reports, and parents’ proxy reports
Auteurs
R. Christopher Sheldrick
Emily N. Neger
Deborah Shipman
Ellen C. Perrin
Publicatiedatum
01-02-2012
Uitgeverij
Springer Netherlands
Gepubliceerd in
Quality of Life Research / Uitgave 1/2012
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-011-9916-5

Andere artikelen Uitgave 1/2012

Quality of Life Research 1/2012 Naar de uitgave