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In October, OAR’s Board of Directors authorized funding for eight new applied autism research studies in 2019. These new grants, totaling $228,036, bring OAR’s total research funding to over $3.7 million since 2002. This is the fifth of eight previews to be featured in The OARacle this year.

Both children and adults with autism spectrum disorder (ASD) are more likely than their counterparts without ASD to use the emergency department. The average number of emergency department encounters is approximately 30 percent higher for children with ASD, 70 percent higher for teens with ASD from ages 15 to 18, and twice as high for adults with ASD.

Despite higher levels of use, the healthcare experience for patients with ASD and their caregivers is poor. Data from the 2009-2010 National Survey of Children with Special Health Care Needs found that caregivers of children with ASD were more likely to report difficulty utilizing services, lack of shared decision making and care coordination, and adverse family impact as compared to caregivers of children with developmental disabilities, mental health conditions, or both. Adult patients with ASD also reported lower satisfaction with patient-provider communication than adults without ASD and cited negative experiences with healthcare professionals as a barrier to care.

Communication impairments, which are common with ASD, can make interactions with healthcare professionals difficult and ineffective. In addition, sensory issues make it difficult if not impossible for patients with ASD to tolerate hospital equipment like cardiac monitors and blood pressure cuffs.

Healthcare staff also face challenges when it comes to caring for patients with ASD, such as feeling inadequately prepared and lacking the training needed to address the healthcare concerns and conditions of those patients.

While there is ample evidence of the challenges faced in the emergency department as noted above, there are no detailed encounters of what happens in real time between patients with ASD and their healthcare clinicians and staff.

In her one-year OAR-funded study, An Ethnographic Study of Emergency Department Encounters for Patients with ASD, Sarabeth Broder-Fingert, MD, MPH, assistant professor of pediatrics, Boston University School of Medicine, plans to study emergency department encounters in order to identify the specific barriers faced by patients with ASD and their families. A better understanding of the interplay of the numerous challenges faced by patients with ASD during emergency department encounters will inform future research, as well as identify practical solutions for improving the emergency department experience for these patients.

She and her research team will use ethnographic methodology, which relies heavily on observation and interviews to collect data. The team will follow 10 adult and 10 pediatric patients with ASD, and their families during their emergency department visits. Research assistants will take detailed notes on the emergency department experience for patients with ASD and their families in real time at Boston Medical Center. 

The study will allow the research team to identify where, when, and how often barriers occur within the various stages of an emergency department visit and pinpoint areas for improvement. That information can then be used to design and implement interventions that can improve the patient experience and bridge the gap between patient and clinician.

Combined with the previous data Dr. Broder-Fingert and her team have gathered from patient caregiver focus groups, staff surveys, outpatient ethnographic research, and a literature review, the findings from the study will be a useful tool to constructively inform best practice standards for improving care for patients with ASD, not only at Boston Medical Center but other hospitals as well. Dr. Broder-Fingert will present the study’s findings at national conferences and publish them in peer-reviewed journals.

Publishing this data, as well as any future interventions that are guided by this data, has the potential to improve the experience for patients with ASD. This work will increase awareness of the challenges this population faces in the healthcare environment and encourage other hospitals and medical facilities to work towards improving the emergency department experience for all patients with ASD.