As the current AIM scoring system does not mention methods for handling missing data, our main analysis population of interest was those 4415 participants who completed all items. In total, 5001 participants returned the AIM survey. Details on recruitment and data collection have been published elsewhere (Monz et al. All data used for the study were provided by caregiver-report and were collected during September and October 2017 as part of a wider study on non-drug treatments and potential barriers to care. To be eligible for the current study, participants had to be the main caregiver living in the same household as a child with ASD, and were instructed to answer the AIM in relation to only the oldest child with ASD between 3–17 years.
All data generated are anonymized and made linkable via unique identifiers. Families complete a battery of questionnaires on entry to the cohort, and third-party researchers (industry or academic) can recruit the same families to their studies thereafter.
SPARK is an online community for people with ASD and their families in the United States (US), who are interested in participating in ASD research (SPARK Consortium 2018). Participants were invited to take part in our study via the Simons Foundation Powering Autism Research for Knowledge (SPARK) cohort. Also, because participants in our study completed the questionnaire electronically, rather than on paper, secondary objectives were to assess the time needed to complete the AIM and confirm other measures of psychometric validity in this format, including internal/external validity and confirmatory factor analysis. Therefore, the primary objective of our study was to address these gaps in a large and representative sample. Successful validation of these two concepts is fundamental for confidence to use the AIM in any study wishing to demonstrate efficacy of a given intervention. Furthermore, there has been no attempt to estimate magnitudes of such differences that constitute clinically meaningful changes. Known-group analysis is needed to demonstrate that a measure is sensitive and able to discriminate between subgroups previously established to have differences in severity. Importantly, the ability of the AIM to detect differences between known subgroups of individuals with ASD has not been demonstrated. 2018), other important validation questions remain untested. While the AIM has shown to have good test–retest reliability, cross-informant reliability and convergent validity with other scales (Kanne et al. Higher domain and total scores represent worse severity of ASD symptoms. The domain scores utilize only 29 of the 41 items, while the total score still builds on all items. The AIM, in contrast, has been shown to exhibit 5 “theoretically and empirically meaningful” symptom domains, namely Repetitive Behavior, Communication, Atypical Behavior, Social Reciprocity and Peer Interaction (Mazurek et al. Social responsiveness scale: SRS-2 Constantino and Gruber 2012). 1986) or focus on non-core or not all core characteristics (e.g. 1997 and Real Life Rating Scale: RLRS Freeman et al. Behavioral Summarized Evaluation Scale: BSE Barthélémy et al. 2012), were developed and tested according to older and more narrow definitions of ASD (e.g. autism diagnostic observational scale: ADOS Lord et al. Additional advantages of the AIM are that other commonly used scales have either been created for diagnostic purposes only (e.g. As a result, the AIM could also potentially serve as suitable tool for real-world monitoring of ASD symptoms, embedded in more routine care or remote settings. Caregiver-reported clinical outcome assessment measures such as the AIM may have some advantages over established interview-administered measures in that they are often less time consuming and do not need specifically trained personnel to administer. It consists of 41 items, and each is rated on a 5-point Likert-type scale for both frequency and impact. The Autism impact measure (AIM) is a caregiver-reported questionnaire, designed to be used in clinical trials and clinical practice to assess effectiveness of interventions in Autism Spectrum Disorders (ASD Kanne et al.
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