Medical Student Meharry Medical College Nashville, Tennessee, United States
Background: Autism is a common neurodevelopmental disability, yet many primary care providers lack knowledge and confidence about caring for children with autism and their families. Primary care visits are brief; having specific tools that alert clinicians to specific concerns of caregivers may improve care and access to appropriate services. The Caregiver Concerns Questionnaire (CCQ) is adapted from a validated instrument, the Parental Concerns Questionnaire (PCQ), a 13-item brief screening checklist assessing the presence and severity of developmental and behavioral concerns expressed by parents of autistic children attending healthcare visits. To create the CCQ we added 6 items about co-occurring medical conditions, wandering and adaptive skills that are common concerns of parents of children with autism. Since 2015 we have electronically sent the CCQ prior to visits with autistic children within our developmental specialty clinic to better understand the needs of families. Objective: We aim to: 1) describe CCQ responses of parents of autistic children completing visits at a developmental specialty clinic, 2) identify differences in CCQ responses by age, sex and race/ethnicity and 3) identify associations between maladaptive behaviors and co-occurring medical conditions and core autism characteristics. Design/Methods: We will examine electronic health records of children with autism aged 2-17 years attending visits at our developmental specialty clinic for completed CCQs and item responses. Our initial data pull identified 4,144 CCQs among 2,216 children with autism in our clinic. Descriptive statistics will be utilized to report results of CCQ items. We will compare the proportion of parents reporting “moderate” or “severe” problems among children of different age, sex and race/ethnicity categories. We will use Poisson regression models to identify associations between maladaptive behaviors (aggression, self-injury) with core autism characteristics (social interactions, repetitive behaviors) and co-occurring medical conditions (gastrointestinal, sleep concerns).
