In particular , there is little evidence that the identified tools would be good at detecting change in intervention studies .
The obvious gaps in available outcome measurement include well-being and participation outcomes for children , and family quality -of-life outcomes , domains particularly valued by our informants ( young people with ASD and parents ) .
This is the first systematic review of the quality and appropriateness of tools design ed to monitor progress and outcomes of young children with ASD .
BACKGROUND The needs of children with autism spectrum disorder ( ASD ) are complex and this is reflected in the number and diversity of outcomes assessed and measurement tools used to collect evidence about children 's progress .
Relevant outcomes include improvement in core ASD impairments , such as communication , social awareness , sensory sensitivities and repetitiveness ; skills such as social functioning and play ; participation outcomes such as social inclusion ; and parent and family impact .
OBJECTIVES To examine the measurement properties of tools used to measure progress and outcomes in children with ASD up to the age of 6 years .
To identify outcome areas regarded as important by people with ASD and parents .
Parent-defined target symptoms respond to risperidone in RUPP autism study: customer approach to clinical trials.
OBJECTIVE A consumer-oriented efficacy assessment in clinical trials should measure changes in chief complaint and consumer request ( symptoms of most concern to patient/caregiver ) , which may be diluted in change scores of multisymptom scales . METHOD In the Research Units on Pediatric Psychopharmacology ( RUPP ) Autism Network 8-week double-blind trial of risperidone versus placebo , the chief concerns of parents were collected at 0 , 4 , and 8 weeks ( endpoint ) , in addition to st and ardized primary measures . Blinded clinical judges rated change from baseline to 4 and 8 weeks on a 9-point scale ( 1 = normalized , 5 = unchanged , 9 = disastrous ) ; 94 participants had usable data . RESULTS The most common symptoms identified by parents were tantrums , aggression , and hyperactivity . Interrater reliability was excellent . Mean ratings at endpoint were 2.8 + /- 1.2 on risperidone and 4.5 + /- 1.3 on placebo ( p < .001 ) . Ratings were collinear with Clinical Global Impression-Improvement and Aberrant Behavior Checklist Irritability subscale ( primary dimensional measure ) . Effect size d was 1.4 , compared to 1.2 on the Aberrant Behavior Checklist Irritability subscale . Effect sizes varied twofold by symptom category , largest for self-injury ( 2.11 ) and tantrums ( 1.95 ) . CONCLUSIONS Risperidone was superior to placebo in reducing symptoms of most concern to parents of autistic children with irritable behavior .  Rating individualized participant-chosen target symptoms seems a reliable , sensitive , efficient , and consumer-friendly way to assess treatment effect and might have clinical application
In particular , there is little evidence that the identified tools would be good at detecting change in intervention studies .
The obvious gaps in available outcome measurement include well-being and participation outcomes for children , and family quality -of-life outcomes , domains particularly valued by our informants ( young people with ASD and parents ) .
This is the first systematic review of the quality and appropriateness of tools design ed to monitor progress and outcomes of young children with ASD .
BACKGROUND The needs of children with autism spectrum disorder ( ASD ) are complex and this is reflected in the number and diversity of outcomes assessed and measurement tools used to collect evidence about children 's progress .
Relevant outcomes include improvement in core ASD impairments , such as communication , social awareness , sensory sensitivities and repetitiveness ; skills such as social functioning and play ; participation outcomes such as social inclusion ; and parent and family impact .
OBJECTIVES To examine the measurement properties of tools used to measure progress and outcomes in children with ASD up to the age of 6 years .
To identify outcome areas regarded as important by people with ASD and parents .