Finding out what matters: Validity of quality of life measurement in young people with ASD

Child: Care, Health and Development

Volumn 39, Issue 4, 2013, Pages 592-601

  Tavernor, L ^a   Barron, E ^a   Rodgers, J ^a   Mcconachie, H ^a  

^a NEWCASTLE UNIVERSITY   (United Kingdom)

Author keywords

ASD; Asperger's syndrome; Autism spectrum disorder; Outcome measures; Quality of life; Validity

Indexed keywords

ARTICLE; ASPERGER SYNDROME; AUTISM; CHILD; FEMALE; HUMAN; MALE; OUTCOME ASSESSMENT; PILOT STUDY; PSYCHOLOGICAL ASPECT; QUALITY OF LIFE; QUESTIONNAIRE; REPRODUCIBILITY; STANDARD; VALIDATION STUDY; PSYCHOLOGY; STANDARDS;

ASPERGER SYNDROME; CHILD; CHILD DEVELOPMENT DISORDERS, PERVASIVE; FEMALE; HUMANS; MALE; OUTCOME ASSESSMENT (HEALTH CARE); PILOT PROJECTS; QUALITY OF LIFE; QUESTIONNAIRES; REPRODUCIBILITY OF RESULTS;

EID: 84879153728     PISSN: 03051862     EISSN: 13652214     Source Type: Journal    
DOI: 10.1111/j.1365-2214.2012.01377.x     Document Type: Article

References (42)

1. Attwood, T. (2007) The Complete Guide to Asperger's Syndrome. Jessica Kingsley Publishers, London, UK.
2. Bastiaansen, D., Koot, H. M., Bongers, J. W., 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, 489-495.
3. Beadle-Brown, J., Murphy, G. & DiTerlizzi, M. (2009) Quality of Life for the Camberwell Cohort. Journal of Applied Research in Intellectual Disabilities, 22, 380-390.
4. Billstedt, E., Gillberg, I. C. & Gillberg, C. (2011) Aspects of quality of life in adults diagnosed with autism in childhood. Autism, 15, 7-20.
5. Burgess, A. F. & Gutstein, S. E. (2007) Quality of life for people with autism: raising the standard for evaluating successful outcomes. Child and Adolescent Mental Health, 12, 80-86.
6. Burgess, S. & Turkstra, L. (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, 474-487.
7. Claes, C., Van Hove, G., van Loon, J., Vandevelde, S. & Schalock, R. L. (2009) Quality of life measurement in the field of intellectual disabilities: eight principles for assessing quality of life-related personal outcomes. Social Indicators Research, 98, 61-72.
8. Clark, E. E., Carlisle, S. S., Giard, S. S., Turner, A. & Winston, M. (2007) Speaking your mind: measuring the subjective quality of life of children with mental illnesses. Issues in Mental Health Nursing, 28, 1277-1291.
9. Eiser, C. & Morse, R. (2001) A review of measures of quality of life for children with chronic illness. Archives of Disease in Childhood, 84, 205-211.
10. Felce, D. & Perry, J. (1995) Quality of life: its definition and measurement. Research in Developmental Disabilities, 16, 51-74.
11. García-Villamisar, D. A. & Dattilo, J. (2010) Effects of a leisure programme on quality of life and stress of individuals with ASD. Journal of Intellectual Disability Research, 54, 611-619.
12. Jennes-Coussens, M., MacGill-Evans, J. & Konig, C. (2006) The quality of life of young men with Asperger syndrome: a brief report. Autism, 10, 403-414.
13. 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, 123-131.
14. Kuhlthau, K., Orlich, F., Hall, T. A., Sikora, D., Kovacs, E. A., Delahaye, J. & Clemons, T. E. (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, 721-729.
15. Landgraf, J. M., Abetz, L. & Ware, J. E. (1996) Child Health Questionnaire (CHQ): A User's Manual. The Health Institute, New England Medical Center, Boston, MA, USA.
16. Limbers, C., Heffer, R. & Varni, J. (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, 1529-1541.
17. MacNeil, B. M., Lopes, V. A. & Minnes, P. M. (2009) Anxiety in children and adolescents with Autism Spectrum Disorders. Research in Autism Spectrum Disorders, 3, 1-21.
18. McConachie, H., Barry, R., Spencer, A., Parker, L., Le Couteur, A. & Colver, A. (2009) Daslne: the challenge of developing a regional database for autism spectrum disorder. Archives of Disease in Childhood, 94, 38-41.
19. McDonagh, J. E. & Bateman, B. (2011) 'Nothing about us without us': considerations for research involving young people. Archives of Disease in Childhood - Education & Practice Edition, epub adc.2010.197947.
20. Mugno, D., Ruta, L., Genitori D'Arrigo, E. & Mazzone, L. (2007) Impairment of quality of life in parents of children and adolescents with pervasive developmental disorder. Health and Quality of Life Outcomes, 5, 22.
21. Petry, K., Maes, B. & Vlaskamp, C. (2005) Domains of quality of life of people with Profound Multiple Disabilities: the perspective of parents and direct support staff. Journal of Applied Research in Intellectual Disabilities, 18, 35-46.
22. Plimley, L. A. (2007) A review of quality of life issues and people with autism spectrum disorders. British Journal of Learning Disabilities, 35, 205-213.
23. Ravens-Sieberer, U., Gosch, A., Rajmil, L., Erhart, M., Bruil, J., Wolfgang, D., Auquier, P., Power, M., Abel, T., Czemy, L., Mazur, J., Czimbalmos, A., Tountas, Y., Hagquist, C., Kilroe, J. & European KIDSCREEN Group. (2005) The KIDSCREEN-52 Quality of Life measure for children and adolescents: development and first results from a European survey. Expert Review of Pharmoeconomics Outcomes Research, 5, 353-364.
24. Ravens-Seiberer, U., Auquier, P., Erhart, M., Gosch, A., Rajmil, L., Bruil, J., Power, M., Duer, W., Cloetta, B., Czemy, L., Mazur, J., Czimbalmos, A., Tountas, Y., Hagquist, C., Kilroe, J. & European KIDSCREEN Group.(2007) The KIDSCREEN-27 quality of life measure for children and adolescents: psychometric results from a cross-cultural survey in 13 European countries. Quality of Life Research, 16, 1347-1356.
25. Renty, J. O. & Roeyers, H. (2006) Quality of life in high-functioning adults with autism spectrum disorder: the predictive value of disability and support characteristics. Autism, 10, 511-524.
26. Rieffe, C., Oosterveld, P., Meerum Terwogt, M., Mootz, S., van Leeuwen, E. & Stockmann, L.(2011) Emotion regulation and internalizing symptoms in children with autism spectrum disorders. Autism, 15, 655-670.
27. Rogers, S. J. & Vismara, L. A. (2008) Evidence-based comprehensive treatments for early autism. Journal of Clinical Child and Adolescent Psychology, 37, 8-38.
28. Saldana, D., Alvarez, R. M., Lobaton, S., Lopez, A. M., Moreno, M. & Rojano, M. (2009) Objective and subjective quality of life in adults with autism spectrum disorders in southern Spain. Autism, 13, 303-316.
29. Seida, J. K., Ospina, M. B., Karkhaneh, M., Hartling, L., Smith, V. & Clark, B. (2009) Systematic reviews of psychosocial interventions for autism: an umbrella review. Developmental Medicine and Child Neurology, 51, 95-104.
30. 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, 85-89.
31. Skevington, S. M., Lofty, M. & O'Connell, K. A. (2004) The World Health Organization's WHOQOL-BREF quality of life assessment: psychometric properties and results of the international field trial: a report from the WHOQOL Group. Quality of Life Research, 13, 299-310.
32. Solans, M., Pane, S., Estrada, M.-D., Serra-Sutton, V., Berra, S., Herdman, M., Alonso, J. & Rajmil, L. (2008) Health-related quality of life measurement in children and adolescents: a systematic review of generic and disease-specific instruments. Value in Health, 11, 742-764.
33. Spencer, L., Ritchie, J. & O'Connor, W. (2003) Carrying out qualitative analysis. In: Qualitative Research Practice: A Guide for Social Science Students and Researchers (eds J. Ritchie & J. Lewis ), pp. 220-268. Sage, London, UK.
34. The KIDSCREEN Group Europe (2006) The KIDSCREEN Questionnaires: Quality of Life Questionnaires for Children and Adolescents - Handbook. Pabst Science Publishers, Lengerich, Germany.
35. Totsika, V., Felce, D., Kerr, M. & Hastings, R. P. (2010) Behavior problems, psychiatric symptoms, and quality of life for older adults with intellectual disability with and without autism. Journal of Autism and Developmental Disorders, 40, 1171-1178.
36. 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 4.0 (PedsQL) generic score scales. Health and Quality of Life Outcomes, 3, 22-29.
37. Varni, J., Seid, M. & Rode, C. (1999) The PedsQL(TM): measurement model for the pediatric quality of life inventory. Medical Care, 37, 126-139.
38. Varni, J. W., Limbers, C. A., Burwinkle, T. M., Bryant, W. P. & Wilson, D. P. (2008) The ePedsQL in type 1 and type 2 diabetes: feasibility, reliability, and validity of the Pediatric Quality of Life Inventory Internet administration. Diabetes Care, 31, 672-677.
39. Waters, E., Davis, E., Mackinnon, A., Boyd, R., Graham, H. K., Kai Lo, S., Wolfe, R., Stevenson, R., Bjornson, K., Blair, E., Hoare, P., Ravens-Sieberer, U. & Reddihough, D. (2007) Psychometric properties of the quality of life questionnaire for children with CP. Developmental Medicine and Child Neurology, 49, 49-55.
40. Waters, E., Davis, E., Ronen, G. M., Rosenbaum, P., Livingston, M. & Saigal, S. (2009) Quality of life instruments for children and adolescents with neurodisabilities: how to choose the appropriate instrument. Developmental Medicine and Child Neurology, 51, 660-669.
41. White-Koning, M., Grandjean, H., Colver, A. & Arnaud, C. (2008) Parent and professional reports of the quality of life of children with cerebral palsy and associated intellectual impairment. Developmental Medicine and Child Neurology, 50, 618-624.
42. Wing, L. (1997) The autistic spectrum. The Lancet, 350, 1761-1766.