Development and psychometric evaluation of a psychosocial quality-of-life questionnaire for individuals with autism and related developmental disorders.
Leslie A Markowitz, Charina Reyes, Rebecca A Embacher and 3 others
PMID 26658953WHAT IT FOUND
A caregiver questionnaire may help clinicians identify psychosocial quality-of-life problems in young children referred for autism or developmental delays.
Families of children with autism reported lower family quality of life before diagnosis.
Key findings
01The questionnaire's planned scales mostly matched the data, but caregiver and family quality-of-life items merged into one factor in this young sample.
02Lower child quality-of-life scores were associated with lower language, lower adaptive function, more behavior problems, and more parent-reported autism symptoms.
03Families of children with autism reported lower family quality-of-life scores around the time of diagnosis than families of children with other developmental disabilities.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
The sample was young, aged 13 to 86 months, and recruited from a clinic for possible autism, so the results may not apply to older children, adults, or children seen in other settings. The questionnaire structure was not checked by splitting the sample and repeating the analysis, and the sample size was modest for that kind of check. There was no healthy comparison group, so the findings describe clinical referrals rather than typical development. All quality-of-life ratings were caregiver reports, and child quality-of-life associations with autism symptoms may reflect parent perception rather than observed symptoms. The family and caregiver scales merged in this young sample, so they may not provide separate information for very young children. Raw scores are interpreted only as crude grades (very low to very high) because no norm-referenced scores were available.
Declared interests
The supplied text does not include a funding or conflict-of-interest declaration. The publication types list NIH and non-U.S. government research support.
The easy way to misread this
Do not treat the CFQL as evidence that a treatment improves quality of life or as a validated therapy outcome measure. It was evaluated in 212 young children referred for diagnosis. The ratings came from caregivers, and the authors state it does not identify the source of low quality of life without clinical interview.