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Quality of Life Research

Erschienen in:

01.05.2014 | Review

Assessment of quality of life in children and youth with autism spectrum disorder: a critical review

verfasst von: Erika Ikeda, Erica Hinckson, Chris Krägeloh

Erschienen in: Quality of Life Research | Ausgabe 4/2014

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Abstract

Purpose

To review the use of quality of life (QOL) measures utilised in children and youth with autism spectrum disorder (ASD).

Methods

Relevant articles were identified through database searches using MEDLINE, CINAHL Plus with Full Text and SPORTDiscus with Full Text via EBSCO Health Database, PsycINFO and ProQuest Health and Medicine (from 2000 to May 2013). Original research articles were included that measured QOL in children and youth with ASD aged 5–20 years. Searches were limited to articles from peer-reviewed journals, in English or German, and those available in full text.

Results

The search identified 1,165 titles and 13 met the inclusion criteria. The review identified a number of QOL measures used in children and youth with ASD, with the most common one being the Pediatric Quality of Life Inventory™ (PedsQL). QOL measures using self-reports were uncommon, and the reliability and validity of QOL measures were not sufficiently reported for this population. Large discrepancies in QOL scores were found between self-reports and proxy-reports. Despite the differences in study design and methodological quality, there was consistency in the results among studies; children and youth with ASD provided lower QOL scores, particularly for social domains, compared to their healthy counterparts.

Conclusions

The PedsQL is likely to be an appropriate QOL measure for use in children and youth with ASD. Future research should focus on examining the appropriateness, reliability and validity of QOL self-reports for use in this population.

Filipek, P., Accardo, P., Baranek, G., Cook, E, Jr, Dawson, G., Gordon, B., et al. (1999). The screening and diagnosis of autistic spectrum disorders. Journal of Autism and Developmental Disorders, 29(6), 439–484. doi:10.1023/a:1021943802493.PubMedCrossRef

Ozonoff, S., Goodlin-Jones, B. L., & Solomon, M. (2005). Evidence-based assessment of autism spectrum disorders in children and adolescents. Journal of Clinical Child and Adolescent Psychology, 34(3), 523–540.PubMedCrossRef

American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders, fourth edition, text revision (DSM-IV-TR) (4th ed.). Washington, DC: American Psychiatric Association.CrossRef

American Psychiatric Association. (2012). DSM-5 proposed criteria for autism spectrum disorder designed to provide more accurate diagnosis and treatment. http://www.dsm5.org.

Kamp-Becker, I., Schröder, J., Muehlan, H., Remschmidt, H., Becker, K., & Bachmann, C. J. (2011). Health-related quality of life in children and adolescents with autism spectrum disorder. Zeitschrift für Kinder-und Jugendpsychiatrie und Psychotherapie, 39(2), 123–131. doi:10.1024/1422-4917/a000098.PubMedCrossRef

Brereton, A. V., Tonge, B. J., & Einfeld, S. L. (2006). Psychopathology in children and adolescents with autism compared to young people with intellectual disability. Journal of Autism and Developmental Disorders, 36(7), 863–870. doi:10.1007/s10803-006-0125-y.PubMedCrossRef

Simonoff, E., Pickles, A., Charman, T., Chandler, S., Loucas, T., & Baird, G. (2008). Psychiatric disorders in children with autism spectrum disorders: Prevalence, comorbidity, and associated factors in a population-derived sample. Journal of the American Academy of Child and Adolescent Psychiatry, 47(8), 921–929. doi:10.1097/CHI.0b013e318179964f.PubMedCrossRef

Eldevik, S., Hastings, R. P., Hughes, J. C., Jahr, E., Eikeseth, S., & Cross, S. (2009). Meta-analysis of early intensive behavioral intervention for children with autism. Journal of Clinical Child and Adolescent Psychology, 38(3), 439–450. doi:10.1080/15374410902851739.PubMedCrossRef

Rao, P., Beidel, D., & Murray, M. (2008). Social skills interventions for children with Asperger's syndrome or high-functioning autism: A review and recommendations. Journal of Autism and Developmental Disorders, 38(2), 353–361. doi:10.1007/s10803-007-0402-4.PubMedCrossRef

10.

Knott, F., Dunlop, A.-W., & Mackay, T. (2006). Living with ASD: How do children and their parents assess their difficulties with social interaction and understanding? Autism, 10(6), 609–617. doi:10.1177/1362361306068510.PubMedCrossRef

11.

WHOQOL Group. (1995). The World Health Organization quality of life assessment (WHOQOL): Position paper from the World Health Organization. Social Science and Medicine, 41(10), 1403–1409. doi:10.1016/0277-9536(95)00112-K.CrossRef

12.

Cummins, R. A. (2005). Moving from the quality of life concept to a theory. Journal of Intellectual Disability Research, 49(10), 699–706. doi:10.1111/j.1365-2788.2005.00738.x.PubMedCrossRef

13.

Schalock, R. L. (2004). The concept of quality of life: What we know and do not know. Journal of Intellectual Disability Research, 48(3), 203–216. doi:10.1111/j.1365-2788.2003.00558.x.PubMedCrossRef

14.

World Health Organization. (1946). Constitution of the World Health Organization. American Journal of Public Health Nations Health, 36(11), 1315–1323.CrossRef

15.

Drotar, D. (2004). Validating measures of pediatric health status, functional status, and health-related quality of life: Key methodological challenges and strategies. Ambulatory Pediatrics, 4(4), 358–364.PubMedCrossRef

16.

Dey, M., Landolt, M., & Mohler-Kuo, M. (2012). Health-related quality of life among children with mental disorders: A systematic review. Quality of Life Research, 21(10), 1797–1814. doi:10.1007/s11136-012-0109-7.PubMedCrossRef

17.

Limbers, C., Heffer, R., & Varni, J. W. (2009). Health-related quality of life and cognitive functioning from the perspective of parents of school-aged children with Asperger's Syndrome utilizing the PedsQL. Journal of Autism and Developmental Disorders, 39(11), 1529–1541. doi:10.1007/s10803-009-0777-5.PubMedCrossRef

18.

Eiser, C., & Morse, R. (2001). Quality-of-life measures in chronic diseases of childhood. Health Technology Assessment, 5(4). doi:10.3310/hta5040.

19.

Coghill, D., Danckaerts, M., Sonuga-Barke, E., Sergeant, J., & The ADHD European Guidelines Group. (2009). Practitioner review: Quality of life in child mental health—conceptual challenges and practical choices. Journal of Child Psychology and Psychiatry, 50(5), 544–561. doi:10.1111/j.1469-7610.2009.02008.x.PubMedCrossRef

20.

Davis, E., Waters, E., Mackinnon, A., Reddihough, D., Graham, H. K., Mehmet-Radji, O., et al. (2006). Paediatric quality of life instruments: A review of the impact of the conceptual framework on outcomes. Developmental Medicine and Child Neurology, 48(4), 311–318. doi:10.1017/s0012162206000673.PubMedCrossRef

21.

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(1), 79–92. doi:10.1111/j.1524-4733.2004.71273.x.PubMedCrossRef

22.

Kuhlthau, K., Orlich, F., Hall, T., Sikora, D., Kovacs, E., Delahaye, J., et al. (2010). Health-related quality of life in children with autism spectrum disorders: Results from the Autism Treatment Network. Journal of Autism and Developmental Disorders, 40(6), 721–729. doi:10.1007/s10803-009-0921-2.PubMedCrossRef

23.

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 and Behavioral Pediatrics, 32(2), 85–89. doi:10.1097/DBP.0b013e318203e558.PubMedCrossRef

24.

Sheldrick, R. C., Neger, E. N., Shipman, D., & Perrin, E. C. (2012). Quality of life of adolescents with autism spectrum disorders: Concordance among adolescents' self-reports, parents' reports, and parents' proxy reports. Quality of Life Research, 21(1), 53–57. doi:10.1007/s11136-011-9916-5.PubMedCrossRef

25.

Varni, J. W., Handen, B. L., Corey-Lisle, P. K., Guo, Z., Manos, G., Ammerman, D. K., et al. (2012). Effect of Aripiprazole 2 to 15 mg/d on health-related quality of life in the treatment of irritability associated with autistic disorder in children: A post hoc analysis of two controlled trials. Clinical Therapeutics, 34(4), 980–992. doi:10.1016/j.clinthera.2012.02.023.PubMedCrossRef

26.

Jennes-Coussens, M., Magill-Evans, J., & Koning, C. (2006). The quality of life of young men with Asperger syndrome: A brief report. Autism, 10(4), 403–414. doi:10.1177/1362361306064432.PubMedCrossRef

27.

Kamp-Becker, I., Schroder, J., Remschmidt, H., & Bachmann, C. J. (2010). Health-related quality of life in adolescents and young adults with high functioning autism-spectrum disorder. GMS Psycho Social Medicine, 7. doi:10.3205/psm000065.

28.

Burgess, S., & Turkstra, L. S. (2010). Quality of communication life in adolescents with high-functioning autism and Asperger syndrome: A feasibility study. Language, Speech and Hearing Services in Schools, 41(4), 474–487.CrossRef

29.

Cottenceau, H., Roux, S., Blanc, R., Lenoir, P., Bonnet-brilhault, F., & Barthélémy, C. (2012). Quality of life of adolescents with autism spectrum disorders: Comparison to adolescents with diabetes. European Child and Adolescent Psychiatry, 21(5), 289–296. doi:10.1007/s00787-012-0263-z.PubMedCrossRef

30.

Tilford, J. M., Payakachat, N., Kovacs, E., Pyne, J. M., Brouwer, W., Nick, T. G., et al. (2012). Preference-based health-related quality-of-life outcomes in children with autism spectrum disorders. PharmacoEconomics, 30(8), 661–679.PubMedCentralPubMedCrossRef

31.

Kuhlthau, K., Kovacs, E., Hall, T., Clemmons, T., Orlich, F., Delahaye, J., et al. (2013). Health-related quality of life for children with ASD: Associations with behavioral characteristics. Research in Autism Spectrum Disorders, 7(9), 1035–1042. doi:10.1016/j.rasd.2013.04.006.CrossRef

32.

Lee, L.-C., Harrington, R., Louie, B., & Newschaffer, C. (2008). Children with autism: Quality of life and parental concerns. Journal of Autism and Developmental Disorders, 38(6), 1147–1160. doi:10.1007/s10803-007-0491-0.PubMedCrossRef

33.

Ravens-Sieberer, U., Erhart, M., Wille, N., Wetzel, R., Nickel, J., & Bullinger, M. (2006). Generic health-related quality-of-life assessment in children and adolescents: Methodological considerations. PharmacoEconomics, 24(12), 1199–1220.PubMedCrossRef

34.

Bell, A. (2007). Designing and testing questionnaires for children. Journal of Research in Nursing, 12(5), 461–469. doi:10.1177/1744987107079616.CrossRef

35.

Varni, J. W., Burwinkle, T. M., Lane, M. M. (2005). Health-related quality of life measurement in pediatric clinical practice: An appraisal and precept for future research and application. Health and Quality of Life Outcomes, 3(34). doi:10.1186/1477-7525-3-34.

36.

Danckaerts, M., Sonuga-Barke, E., Banaschewski, T., Buitelaar, J., Döpfner, M., Hollis, C., et al. (2010). The quality of life of children with attention deficit/hyperactivity disorder: A systematic review. European Child and Adolescent Psychiatry, 19(2), 83–105. doi:10.1007/s00787-009-0046-3.PubMedCentralPubMedCrossRef

37.

Varni, J. W., & Burwinkle, T. M. (2006). The PedsQL as a patient-reported outcome in children and adolescents with attention-deficit/hyperactivity disorder: A population-based study. Health and Quality of Life Outcomes, 4(1), 26. doi:10.1186/1477-7525-4-26.PubMedCentralPubMedCrossRef

38.

World Health Organization. (2012). Programme on mental health: WHOQOL user manual. http://apps.who.int/iris/bitstream/10665/77932/1/WHO_HIS_HSI_Rev.2012.03_eng.pdf.

39.

Murphy, B., Herrman, H., Hawthorne, G., Pinzone, T., & Evert, H. (2000). The World Health Organization Quality of Life (WHOQOL) Study: Australian WHOQOL-100, WHOQOL-BREF and CA-WHOQOL instruments: User's manual and interpretation guide. Melbourne, Australia: Melbourne WHOQOL Field Study Centre.

40.

Sapin, C., Simeoni, M.-C., El Khammar, M., Antoniotti, S., & Auquier, P. (2005). Reliability and validity of the VSP-A, a health-related quality of life instrument for ill and healthy adolescents. Journal of Adolescent Health, 36(4), 327–336. doi:10.1016/j.jadohealth.2004.01.016.PubMedCrossRef

41.

Feeny, D., Furlong, W., Torrance, G. W., Goldsmith, C. H., Zhu, Z., DePauw, S., et al. (2002). Multiattribute and single-attribute utility functions for the Health Utilities Index Mark 3 system. Medical Care, 40(2), 113–128. doi:10.2307/3767552.PubMedCrossRef

42.

Boyle, M. H., Furlong, W., Feeny, D., Torrance, G. W., & Hatcher, J. (1995). Reliability of the Health Utilities Index-Mark III used in the 1991 cycle 6 Canadian General Social Survey Health Questionnaire. Quality of Life Research, 4(3), 249–257. doi:10.2307/4034493.PubMedCrossRef

43.

Seiber, W. J., Groessl, E. J., David, K. M., Ganiats, T. G., Kaplan, R. M. (2008). Quality of Well Being Self-administered (QWB-SA) scale: User's manual. https://hoap.ucsd.edu/qwb-info/QWB-Manual.pdf.

44.

Kaplan, R. M., Sieber, W. J., & Ganiats, T. G. (1997). The quality of well-being scale: Comparison of the interviewer-administered version with a self-administered questionnaire. Psychology and Health, 12(6), 783–791. doi:10.1080/08870449708406739.CrossRef

45.

Riley, A. W., Forrest, C. B., Starfield, B., Rebok, G. W., Robertson, J. A., & Green, B. F. (2004). The parent report form of the CHIP-Child Edition: Reliability and validity. Medical Care, 42(3), 210–220. doi:10.2307/4640730.PubMedCrossRef

46.

United Nations Chidren's Fund. (2005). The convention on the rights of the child: Participation rights.

47.

Cremeens, J., Eiser, C., & Blades, M. (2006). Characteristics of health-related self-report measures for children aged three to eight years: A review of the literature. Quality of Life Research, 15(4), 739–754. doi:10.1007/s11136-005-4184-x.PubMedCrossRef

48.

Ikeda, E. (2013). Quality of life and self-report in children and adolescents with cognitive disability. Thesis, Auckland University of Technology, Auckland, New Zealand.

49.

Bastiaansen, D., Koot, H. M., Bongers, I. L., Varni, J. W., & Verhulst, F. C. (2004). Measuring quality of life in children referred for psychiatric problems: Psychometric properties of the PedsQL™ 4.0 generic core scales. Quality of Life Research, 13(2), 489–495. doi:10.1023/B:QURE.0000018483.01526.ab.PubMedCrossRef

50.

Smith, K. W., Avis, N. E., & Assmann, S. F. (1999). Distinguishing between quality of life and health status in quality of life research: A meta-analysis. Quality of Life Research, 8(5), 447–459. doi:10.1023/a:1008928518577.PubMedCrossRef

51.

Mitchell, P., & O'Keefe, K. (2008). Brief report: Do individuals with autism spectrum disorder think they know their own minds? Journal of Autism and Developmental Disorders, 38(8), 1591–1597. doi:10.1007/s10803-007-0530-x.PubMedCrossRef

52.

Power, M. J., & Green, A. M. (2010). Development of the WHOQOL disabilities module. Quality of Life Research, 19(4), 571–584. doi:10.1007/s11136-010-9616-6.PubMedCrossRef

Titel: Assessment of quality of life in children and youth with autism spectrum disorder: a critical review
verfasst von: Erika Ikeda
Erica Hinckson
Chris Krägeloh
Publikationsdatum: 01.05.2014
Verlag: Springer International Publishing
Erschienen in: Quality of Life Research / Ausgabe 4/2014
Print ISSN: 0962-9343
Elektronische ISSN: 1573-2649
DOI: https://doi.org/10.1007/s11136-013-0591-6

Springer Medizin

Abstract

Purpose

Methods

Results

Conclusions

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