Assessing Ease of Delivering Emergency Care for Patients with Autism Spectrum Disorders

Abstract

The aim of this study was to develop a method for objectively assessing the delivery of care to children with autism spectrum disorder (ASD) in the emergency department (ED). Methods: A case-control study of patients ages 2 to 18 years admitted to the hospital from January 2016 to January 2018. Cases were defined as patients with an International Classification of Diseases, Tenth Revision diagnosis of ASD or other pervasive developmental disorder (F84) in their medical record and were matched 1:1 with neurotypical controls. The primary outcome was ability to complete several core tasks clinically necessary within an ED visit and summarized into a Task Completion Index (TCI). Results: Overall, children with ASD had higher median TCIs of 0.25 (interquartile range [IQR] 0-0.45) versus 0 (IQR 0-0.25) when compared with children without ASD (p < 0.01). Children with ASD were 5 times more likely to have difficulty with triage vitals, 3 times more likely to require additional staff for peripheral intravenous placement, and 4 times more likely to experience delays or disruptions to their plan of care. The TCI was also associated with 8-fold increased odds of receiving pharmacologic or physical restraint. Conclusions: The TCI reflects difficulty accomplishing core tasks necessary to complete an ED visit. Children with ASD have higher TCIs than neurotypical controls, which puts them at higher risk for care disruptions. Evaluation of initiatives to improve quality of care for children with ASD should focus not only on metrics of overall experience and satisfaction but also how these initiatives affect the ability to effectively administer care.

Autistic patients' experiences of the hospital setting: A scoping review

“…One in five parents report that their autistic child has difficulty with waiting time before admission, while transitioning from one care setting to another can be complicated due to a lack of predictability of what will happen next (Garrick et al, 2021; Muskat et al, 2015; Nicholas et al, 2016). Waiting times can be exceptionally long and challenging in an unfamiliar environment with many sensory challenges, and the negative impact of waiting time on AP and their families can be lasting (Gupta et al, 2019; Kouo et al, 2021). Parents often report limiting the daily activities of their autistic child to decrease illness to avoid future visits to the emergency department and hospital (Garrick et al, 2021).…”

“…Waiting times can be exceptionally long and challenging in an unfamiliar environment with many sensory challenges, and the negative impact of waiting time on AP and their families can be lasting (Gupta et al, 2019;Kouo et al, 2021). Parents often report limiting the daily activities of their autistic child to decrease illness to avoid future visits to the emergency department and hospital (Garrick et al, 2021).…”

Caregiver Satisfaction with Emergency Department Care for Pediatric Patients with Neurodevelopmental Disorders

“…17 Research has identified many interventional techniques to combat some of these challenges, including reducing visual and auditory stimuli, inclusion of caregivers, and staff education. 17,[27][28][29] These interventions reflect the importance of communication and interpersonal skills; 2 themes that almost universally throughout the NDD literature have been shown to be associated with satisfaction. In 2018, Kirsch et al 22 surveyed 378 families of patients with autism and demonstrated that these were the most important factors contributing to patient satisfaction in ED and urgent care visits.…”

Virtual Training of Medical Students to Promote the Comfort and Cooperation of Patients with Neurodevelopmental Disabilities

“…In some cases, noncooperation may be due to poor receptive language skills (i.e., difficulty understanding instructions to open the mouth or to breathe when checking lung functioning; Cuvo et al, 2010 ). Uncooperative behavior may lead to the use of risky, potentially unnecessary procedures, such as restraints, sedation, or anesthesia (Boynes et al, 2010 ; Dougherty, 2009 ; Kouo et al, 2021 ). Such procedures may deter caregivers from seeking services for their children (e.g., Kannikeswaran et al, 2009 ).…”

“…anesthesia (Boynes et al, 2010;Dougherty, 2009;Kouo et al, 2021). Such procedures may deter caregivers from seeking services for their children (e.g., Kannikeswaran et al, 2009).…”