An Autism Friendly Hospital Initiative: Measuring Distress in Children with ASD during Vital Signs

Background: On average, children with autism spectrum disorder (ASD) have more medical visits than those without this diagnosis (Liptak et al., 2006; Shimabukuro et al., 2008) and have more difficulty tolerating procedures due to rigid behaviors, sensory seeking behaviors, and difficulty coping with change (Davignon et al., 2014). Vital signs (e.g., height, weight, HR, BP) are routinely collected across healthcare settings to provide essential information for care. When vitals are missed, there may be significant implications for the timeliness, quality, and safety of care provided. Little is known about how children with ASD tolerate these exams and to what extent vital signs are missed or delayed.

Objectives: We aimed to determine (1) the likelihood that patients with ASD are unable to complete vital signs exams and (2) the frequency and severity of distress behaviors in those who are able to complete the procedure. To explore if distress behaviors were specific to ASD we utilized a comparison group of patients with other developmental/neurological diagnoses.

Methods: Participants included 56 patients with ASD and 45 without ASD (ages 4-17) who presented for routine care in the neurology and developmental medicine outpatient clinics. We included equal numbers of children with and without intellectual disabilities in each group. An adapted version of the Brief Behavioral Distress Scale (BBDS; Tucker et al., 2001) was administered to measure the frequency and severity of distress behaviors during vital signs collection. Interrater reliability on the BBDS was established utilizing a separate cohort of patients recruited from the neurology outpatient clinic. BBDS scores for each procedural step were calculated and total BBDS score was computed. Total time to completion was recorded and it was also noted when patients could not complete the procedure.

Results: There were no significant differences in baseline characteristics when comparing the two groups (Table 1). Total BBDS scores were significantly higher for patients with ASD than for patients without ASD, after controlling for baseline characteristics (F(8,91)=6.63, p<0.001). Additionally, age and intellectual disability were unique predictors of higher total BBDS scores in the ASD group (p<0.001). The average time required to complete vital signs was significantly longer for the ASD group compared to the non-ASD group (4.9 vs. 3.5 minutes; p<0.001). Children with ASD were also found to be twice as likely to be unable to complete vital signs compared to children without ASD.

Conclusions: Patients with ASD exhibited significantly more behavioral distress during the vital signs exam compared to patients without ASD. Additionally, children with ASD had significantly longer exams and were more likely to miss the exam altogether. To our knowledge, this is the first study to demonstrate that children with ASD have difficulty tolerating one of the most routine and important procedures in healthcare, the vital signs exam. These findings highlight the need for additional behavioral supports to improve patient experience as well as the quality and efficiency of patient care for children with ASD.