Journal of Neurology and Neuroscience

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Development of an Internet Survey to Determine Barriers to Early Diagnosis and Intervention in Autism Spectrum Disorders

Brasher SN, Elder JH

Background: Autism Spectrum Disorders (ASD) are complex neurodevelopmental disorders with symptoms presenting in early childhood. Although a reliable diagnosis can be made by age 2, most children with ASD are not diagnosed until age 4. Delayed diagnosis subsequently leads to delayed treatments, thus impacting long-term outcomes for children with ASD. Additionally, alternative therapy use in ASD is common but lacks empirical evidence. Therefore, the purpose of this article is to describe the use of a modified Delphi method to construct an Internet survey for healthcare providers to identify perceived barriers to early diagnosis and intervention, as well as alternative therapy use in children with ASD.

Methods/Findings: Survey questions were developed based on an extensive literature review. Preliminary survey questions were presented to an interdisciplinary Community Advisory Board (CAB) of ASD professionals (n=10) to obtain feedback. A modified Delphi method elicited group feedback regarding the survey content. Three independent rounds and analyses were performed during the process. The final survey was constructed online using REDcap (Research Electronic Data Capture) and disseminated to healthcare professionals via the Internet. Limitations include the preliminary nature of this instrument development study and small sample size.

Conclusion: The researchers used the Delphi method’s structured communication process to collect, group, sort, and rank data in a series of sequential questionnaires distributed to individuals with expertise on the topic. This was an effective method of establishing consensus among providers regarding clinical questions. This work provided insight to the clinical problem of barriers to early diagnosis and intervention in children with ASD, as well as alternative therapy use. Subsequent research should further characterize these barriers in order to reduce or eliminate them, empirically evaluate the most common alternative treatments, and improve long-term outcomes of children with ASD.