The Caregiver Concerns Questionnaire: A Tool to Target Care for Children on the Autism Spectrum

To report results of the Caregiver Concerns Questionnaire (CCQ), a brief screening checklist that assessed the presence and severity of 19 developmental, behavioral, psychiatric and medical concerns expressed by caregivers of autistic children and to identify associations between CCQ items related to gastrointestinal and sleep problems with items related to maladaptive behaviors. We examined electronic health record data from children aged 2-17 years attending developmental specialty clinic visits whose caregivers completed the CCQ. Descriptive statistics and regression models were used for analysis. Among 2096 children on the autism spectrum with completed CCQs the mean number of items rated as moderate to severe was 7.60 (95% CI 7.41-7.79) and 7 of 19 items were rated as moderate to severe by > 50% of caregivers (social interactions, sensory issues, language use, anxiety, hyperactivity, attention span, and eating habits). There were differences in several CCQ item responses by age, sex and ethnicity. Caregivers of older children more often rated attention span, sensory issues, anxiety, mood swings, motor issues, and social interactions as moderate to severe problems than younger groups. There were associations between caregiver reported moderate to severe sleep and gastrointestinal problems with moderate to severe behavioral and psychiatric conditions (aggression, self-injury, anxiety, mood problems, hyperactivity). The Caregiver Concerns Questionnaire is a promising tool for ongoing care visits with children on the autism spectrum, quickly screening for common developmental issues and co-occurring conditions. Future studies could assess the utility of the CCQ in primary care settings.