Caregiver-Youth Agreement on the Nine-Item Avoidant/Restrictive Food Intake Disorder Survey.

Background: Patient and caregiver perspectives are critical in the evaluation of avoidant/restrictive food intake disorder (ARFID); however, little is understood about how caregiver and youth perceptions may differ. This study compared caregiver and youth reports among pediatric patients from an outpatient ARFID program.

Methods: Patients (217 individuals with ARFID, aged 8-17) and their caregivers completed the Nine-Item ARFID Screen (NIAS), a screening tool with parallel youth and caregiver report forms. The NIAS measures ARFID symptomatology across three presentations: sensory-based selectivity (Picky Eating), low appetite/lack of interest in eating (Appetite), and fear of aversive consequences (Fear). Patient and caregiver NIAS scores were compared using t tests, and agreement was assessed via Pearson correlations. We examined the unadjusted bivariate association between patient age and caregiver-patient agreement.

Results: Patient mean age was 12.9 (SD = 2.5) and the majority were male (57.1%) and White, non-Hispanic (68.2%) and with private insurance (88.0%). Caregivers reported higher ARFID symptomatology than patients themselves. Using caregiver scores compared to patients, a larger percentage was classified as all three presentations (23.5% vs. 11.5%) or combined selectivity and appetite (46.0% vs. 31.8%). Caregiver scores were higher on average regardless of patient age.

Discussion: Results support obtaining both patient and caregiver reports whenever possible. Each perspective, as well as areas of discordance, may inform additional evaluation and treatment planning.