Assessing Parental Perceptions of Meaningful Outcomes for Children with Autism Spectrum Disorder.

Abstract

Background: Outcomes of children diagnosed with autism spectrum disorder (ASD) generally focus on cognition, language, behavioral, and adaptive functioning, yet it is unknown whether this reflects patient and caregiver priorities.

Objective: Identify parental perceptions of ASD outcomes and identify whether health care providers are currently addressing these concerns.

Methods: Participant were 60 parents of school-aged children previously diagnosed with ASD participating in a larger autism outcomes study. Parents answered the open-ended question, "What aspect of your child's functioning matters most for your child at this time?" They also ranked a list of outcome categories (thinking and reasoning skills, daily living skills, etc). Parents answered a second open-ended question, "What should healthcare providers be asking about how your child is doing, that they may not be currently asking?" Open-ended independent coding and thematic analysis were used to identify themes for the open-ended questions.

Results: The most common themes identified with "what aspect of your child's functioning matters most" were "Social," "Communication," "Emotional," and "Behavior." These were similar to the results of a ranking question in which parents ranked "Communicating with and understanding others," "Social skills," and "Behavior" as most important. "Emotional" was a unique theme, although there is potential overlap between this and the theme of "Behavior." The most common theme identified with the question about what health care providers should be asking was "Social," followed by "Nothing."

Conclusion: This study demonstrates that parental concerns largely match previous outcome categories, with the exception of a theme identified as "Emotional" which may overlap with "Behavior."