Quality of Life in Adolescents With Autism Spectrum Disorders: Reliability and Validity of Self-Reports
Posted Jan 04 2011 9:12pm
This is one of those papers I really wanted to read and report on, but I fear that I will not get the time to do an in-depth read for some time. But the subject is very interesting and I wanted to get this out before it drops off my radar.
From the *Department of Pediatrics, Fallon Clinic, Worcester, MA; †Developmental-Behavioral Pediatrics Floating Hospital, Tufts Medical Center, Boston, MA.
PURPOSE: This study examined the reliability and validity of self-reported quality of life (QoL) among adolescents with autism spectrum disorders (ASDs) but without mental retardation (IQ >70) using a validated QoL measure, Pediatric Quality of Life Inventory. Secondarily, the self-reported QoL of adolescents with ASDs was compared with published normative data.
METHODS: Thirty-nine adolescents with ASDs and their parents completed a QoL instrument and brief measures of psychosocial distress and self-esteem. A screening test of cognitive abilities was administered to adolescents; parents completed an assessment of behavioral and emotional symptoms and an assessment of the presence and extent of autistic social impairments.
RESULTS: Adolescent self-reports of QoL demonstrated internal reliability and concurrent validity. Self-reports on the Pediatric Quality of Life Inventory demonstrated moderate to large positive correlations with a measure of self-esteem and moderate to large negative correlations with measures of anxiety and mood. Concurrent validity with parent proxy reports fell within the range of expected values based on past studies of inter-rater reliability for QoL, with parents of adolescents reporting lower QoL when compared with adolescent reports. Adolescents reported QoL below the population mean for all domains.
CONCLUSIONS: Results of this study provide preliminary evidence that adolescents with ASDs are able to report on their own QoL in a valid and reliable manner. Based on our findings, the measurement of QoL may be useful for clinical care and research about adolescents with ASDs.
The idea here is excellent—ask the autistics themselves about their quality of life (QoL). The authors found that the adolescents were more accurate than their parents in describing their quality of life. Reported quality of life is lower than for the general population. QoL is higher for adolescents with higher self esteem and lower for “measures of anxiety and mood”. I don’t know if the authors can or tried to tackle the question of whether high self-esteem contributes to quality of life, or the other way around…or if it is a much more complex situation? The study is limited to autistics with IQ>70. The group is fairly small as well. Of course the big question—how to improve quality of life? What from this study can help in that regard, or in directing future studies.
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I don’t know if the authors can or tried to tackle the question of whether high self-esteem contributes to quality of life, or the other way around…
I believe it's both.
[Abstract say] The idea here is excellent—ask the autistics themselves about their quality of life (QoL)...The authors found that the adolescents were more accurate than their parents in describing their quality of life...
EXCELLANT indeed...but idea ignored and omitted from policy commissions (eg, Autism Blue Ribbon Commission in CA-USA)...ditto provider and funding agency boards (except for the patronized token)
they are also more accurate than many professionals (appointed to these commissions) about what is needed in policies and programs...
I can only question the validity of results drawn from self-reporting by adolescents, for heaven's sake! And, I'll throw in my usual cavil re. the range covered by 'all autistics.' Mea culpa: I should read the study before opining - but my plate's rather full.