The Autism Spectrum Ambassador Program: Enhancing a Novel Medical Student Run Program

Background: Recent studies have identified that children with Autism Spectrum Disorder (ASD) often face negative experiences when accessing healthcare. Triggers for these patients can include changes in routine and anxiety from interactions with new people and environments. The Autism Spectrum Ambassador Program (ASAP) aims to improve the healthcare experience for pediatric patients diagnosed with ASD and their families by providing the child and family with a medical student Ambassador to accompany them and facilitate accommodations on their behalf during a medical or surgical procedure at the Penn State Hershey Children’s Hospital.

Objectives: This study aims to use a common quality improvement methodology (PDSA cycles) to improve recruitment and enrollment for our novel medical student run Ambassador program.

Methods: Program materials were created by study personnel to teach medical students about autism and the Ambassador Program. This program pairs ASAP-trained medical students with a family whose child is scheduled for an outpatient procedure and who may benefit from accommodations to improve cooperation and procedure tolerance. We realized over the first full year of implementation that the protocol to identify and recruit participants was not as effective as we had hoped. To identify potential barriers we used structured, open ended interviews with every member of the study team. A flowchart detailing the protocol steps was created and changes to the study protocol were made based on the feedback learned from interviews to maximize the program’s success.

Results: In the 2 years after the program’s inception, 23 patients were identified for enrollment. Ten participants were enrolled as controls. While 13 were enrolled into the intervention group, only 4 were assigned student Ambassadors. The remaining 9 did not complete the accomodation survey despite several reminders to do so. Figure 1 details the themes identified and potential solutions for each barrier as a result of the interviews conducted. Figure 2 depicts a flow chart which links each barrier (colored letter) with the step in the protocol that is affected. We decided to focus changes that would 1) increase the number of available Ambassadors, 2) better identify potential study participants, and 3) enhance the flexibility of the consenting process. Changes included 1) allowing student Ambassadors to create and distribute accommodation plans even if they themselves were not available to be at the child’s procedure in person, 2) distributing study flyers to all clinic sites and re-educating the surgical sub-specialities about the program and 3) adding an option to consent potential recruits over the phone rather than only when they were in the hospital for a planned visit. While plans for protocol changes have been made, no data have yet to be collected.

Conclusions: While the ASAP program aims to improve the healthcare experience for pediatric patients diagnosed with ASD and their families, barriers exist that prevent the positive impact of this program to be fully realized. We hope that recent changes to the protocol informed by detailed interviews with study personnel will lead to improved outcomes for our patients with autism and their families.