The Penn State Hershey Children’s Hospital Autism Spectrum Ambassador Program: A Novel Medical Student Run Advocacy Program

Background: Autism Spectrum Disorder (ASD) is one of the most common pediatric neurodevelopmental disorders in the U.S with prevalence of 1 in 45 children. The number of patients with ASD presenting for therapeutic or diagnostic procedures under sedation/anesthesia is increasing. These children face significant barriers interacting with the healthcare team and often have negative experiences. Recent literature shows that Autism care plans are effective in improving patient experience and outcomes; however, no study has evaluated the implementation of custom care plans with use of an adjunct medical student ambassador (MSA) model.

Objectives:

1. Describe a novel, student-run advocacy program for children with ASD undergoing medical procedures
2. Assess patient satisfaction with a customized Accommodation Plan (AP) implemented by the healthcare team and with having a MSA during the procedure
3. Analyze changes in career interests and ease of interaction with children with ASD for participating medical students

Methods: The Autism Spectrum Ambassador Program (ASAP) is a Penn State Children’s Hospital initiative for training medical students to advocate for patients with ASD during a medical procedure under anesthesia. Following IRB approval and parental consent, a convenience sample of children with ASD were enrolled in the pilot project. Subjects were assigned to either the intervention or control arm based on availability of a MSA. Each child’s guardian completed an Accommodation Survey prior to his/her procedure to identify unique accommodations to be implemented during the hospitalization. Then, an individualized AP was made based on Accommodation Survey responses and distributed to the child’s healthcare team, regardless of whether a MSA would be present that day or not. Both parents and MSAs were requested to complete a Satisfaction Survey shortly after the procedure.

Results: A total of 23 children (13 intervention and 10 controls), ages 5-17 years and 78% male, were enrolled in this pilot program. Of those in the intervention group, 4 were paired with a MSA. 50% of controls completed the satisfaction survey compared to 31% of those in the intervention group. 75-80% of the participants felt that ASAP enhanced their patient experience when compared to a prior hospitalization. Importantly, MSAs did not have a negative effect on patient experience by patient report. MSAs appeared to enhance the staff’s implementation of the APs (from 60% to 100% in our sample). There was a small shift in reported MSA career interest to Developmental Pediatrics after program completion. 100% of students reported both feeling more comfortable with this patient population and high satisfaction with the overall experience.

Conclusions: ASAP aims to improve the patient experience for pediatric patients diagnosed with ASD and for their families. Experiences with the program were overall positive, and the MSAs were well received. For MSAs, there was a small shift in career interest and an increased comfort level while interacting with special-needs children. The researchers anticipate that changes in the recruitment process is warranted to enhance participant enrollment and acknowledge the full value of the program.