610 - Ethnicity and Language Information for Autistic Patients Within the Asian Diaspora is Limited in Healthcare Records

Monday, May 1, 2023

9:30 AM – 11:30 AM ET

Poster Number: 610
Publication Number: 610.402

Maxine Covello, Childrens Hospital of Philadelphia, Philadelphia, PA, United States; Maggie Rose Pelella, Children's Hospital of Philadelphia, Philadelphia, PA, United States; Amanda Bennett, 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; Kate E. Wallis, Perelman School of Medicine at the University of Pennsylvania, PHILADELPHIA, PA, United States; Zoe Wong, Childrens Hospital of Philadelphia, Philadelphia, PA, United States; Dieu Truong, Children's Hospital of Philadelphia, Philadelphia, TX, 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

Co-Author(s)

Maxine Covello, B.S. Clinical Psychology (she/her/hers)

Clinical Research Assistant
Childrens Hospital of Philadelphia
Philadelphia, Pennsylvania, United States

Background: In large health systems, the electronic health record (EHR) should contain the information needed to support culturally responsive care and research about patients' Autism experiences. Unfortunately, the widely used “Asian” demographic variable in most US social systems (including EHR) lacks the inclusion of the diverse experience within the Asian diaspora (e.g., ethnicities, languages). Identifying what is present and missing is a critical first step toward building a social system that is inclusive and responsive to all identities of Autistic individuals within the Asian diaspora.

Objective: First, we set out to determine what demographic information could be found within the EHR to potentially describe the intersectional experience of the families of Autistic children from the Asian diaspora. Second, the reliability of documentation related to referrals, diagnostics, and intervention were examined.

Design/Methods: Participants came from a published toddler cohort of 25,999 children (Guthrie et al., 2019). Fifty-three children were both Autistic and identified as “Asian” in their EHR. Manual chart reviews were conducted on all 53 and identified information from progress notes, evaluations, or external media. If dates were not explicitly reported, they were estimated with consensus from the study team.

Results: Specific demographic information was inconsistently documented in the EHR. Documentation of specific ethnicity for 24.5% of families (Table 1), was absent. Similarly, while at least 10 different Asian languages were identified, many languages were not documented. Regarding clinical care we found high rates of reliable documentation for Autism diagnostic evaluations (inter-rater reliability on 10% of records was >90%), but not for the dates of general intervention initiation, Autism diagnostic referral or for Autism-specific interventions (below 60%).

Conclusion(s): The Asian diaspora is often excluded in research, therefore illuminating what’s absent is as critical as what’s available in the EHR system to improve cultural responsiveness in healthcare. Our preliminary results highlight that culturally responsive information was either not documented or difficult to find. Next steps include understanding how demographic information is collected at healthcare visits, and qualitatively analyzing progress notes and other documentation to describe the families’ experience from screening to receiving services.