569 - It's Time to Improve and Systematize How We Document Autism Care in Our Medical Records.

Friday, April 28, 2023

5:15 PM – 7:15 PM ET

Poster Number: 569
Publication Number: 569.109

Zoe Wong, Childrens Hospital of Philadelphia, Philadelphia, PA, United States; Amanda Bennett, Children's Hospital of Philadelphia, Philadelphia, PA, United States; Lindsey Dowd, Boston College, Drexel Hill, PA, United States; Jesse Dudley, Children's Hospital of Philadelphia, Philadelphia, PA, United States; Marsha Gerdes, Children's Hospital of Philadelphia, Philadelphia, PA, United States; Whitney Guthrie, Children's Hospital of Philadelphia, Philadelphia, PA, United States; Margo Schoenberg, Childrens Hospital of Philadelphia, Philadelphia, PA, United States; Kate E. Wallis, Perelman School of Medicine at the University of Pennsylvania, PHILADELPHIA, PA, United States; Judith S. Miller, Children's Hospital of Philadelphia -, Philadelphia, PA, United States

Presenting Author(s)

Zoe Wong, B.S. (she/her/hers)

Clinical Research Assistant/Medical Student
Childrens Hospital of Philadelphia/Sidney Kimmel Medical College
Philadelphia, Pennsylvania, United States

Background: The electronic health record (EHR) system has vast potential in service use tracking, care coordination, and population-based research for children with autism. However, research on the reliability of EHR documentation for autism diagnosis and care is scarce.

Objective: To investigate the reliability of diagnostic and service documentation within one healthcare system and, for variables with high reliability, examine potential disparities in care.

Design/Methods: Participants were drawn from a toddler cohort who received primary care services within our pediatric health system between 2011 and 2015 (n=23,015). Of the 731 cohort children with autism, 217 were randomly selected for further review. Manual chart reviews identified documentation on referrals, diagnoses, or interventions (both general and autism-specific); each review took at least 30 minutes. If dates were not explicitly reported, they were estimated with consensus from the study team. The presence of documentation and dates were compared across patient demographics and diagnostic provider using chi-square tests. Interrater reliability (IR) analyses were performed on 31 records with IRs for dates calculated within a 3-month window. Data that was both present and reliable ( >80%) was further analyzed and compared across similar subgroups.

Results: Documentation was both present and reliable ( >80%) for recommended and received general interventions and autism diagnoses (Table 1). Documentation was infrequent or unreliable for initial autism diagnostic referrals and recommended and received autism-specific services. Further analysis of reliable variables found that most children received general intervention services prior to their autism diagnosis (Table 2). Those who received pre-diagnostic Early Intervention services received an earlier diagnosis (p=0.029). However, Black children were less likely to receive general interventions before their diagnosis or receive their diagnosis from a developmental behavioral pediatrician (p=0.039 and 0.014, respectively). Additional differences in care by provider type and patient demographics will be discussed.

Conclusion(s): Autism diagnoses and general intervention services could be located with time-intensive manual chart review. Unfortunately, documentation on type and timing of autism-specific services was very limited. Systematizing basic autism documentation presents an extraordinary opportunity to improve care coordination, implement quality improvement initiatives, and conduct population-level research on early diagnosis, intervention, and disparities.