566 - Assessment of Length, Content, and Readability of Autism Clinic Intake Paperwork

Friday, April 28, 2023

5:15 PM – 7:15 PM ET

Poster Number: 566
Publication Number: 566.109

Cassandra I. Gonzalez, Rutgers, Robert Wood Johnson Medical School, Woodbridge, NJ, United States; Erika Phelps Nishiguchi, UH Rainbow Babies & Children's Hospital, Cleveland, OH, United States; Manuel E. Jimenez, Rutgers, Robert Wood Johnson Medical School, New Brunswick, NJ, United States; Katharine E. Zuckerman, Doernbecher Children's Hospital at Oregon Health & Science University, Portland, OR, United States; K. Casey Lion, University of Washington/ Seattle Children's Hospital, Bothell, WA, United States; Anisha Srinivasan, University of California Davis Children's Hospital, Sacramento, CA, United States

Presenting Author(s)

Cassandra I. Gonzalez, BA (she/her/hers)

Medical Student
Rutgers, Robert Wood Johnson Medical School
Woodbridge, New Jersey, United States

Background: The Joint Commission recommends <5^th grade reading level for written materials to meet health literacy needs. Many autism (ASD) clinics require intake paperwork completion for evaluation, which may be a barrier in access to care. The literacy level of ASD clinic intake forms has never been examined.

Objective: Examine the length, content, readability, and availability of translated intake forms used by clinics conducting ASD evaluations.

Design/Methods: We conducted a national cross-sectional online scan and survey of ASD clinics affiliated with Children’s Hospital Association member hospitals from 11/2021-8/2022. For each eligible hospital (n=164), intake forms were requested through a web-based survey and, when available, downloaded from the clinic’s website. We excluded clinics that did not conduct ASD diagnostic evaluations. Literacy level was analyzed using the Flesch-Kincaid Grade Level (English) or the Fernandez-Huerta Index (Spanish). Length was evaluated using page count of the intake packet. A bilingual team member conducted content analysis examining requested information such as developmental history and medical history.

Results: 92 clinics completed the survey (56%), 26 clinics uploaded their intake packets; 41 additional packets were identified via the online scan. 67 packets were collected and analyzed; 56 clinics had packets in English, 11 of those also had packets in Spanish. On average, packets were written above the 5^th grade reading level (Flesch-Kincaid Grade Level median: 6.6, Interquartile Range (IQR) 5.2-8.2; Fernandez Huerta Index median 74, IQR 67-78; Table 1). Median packet length was 11 pages for English and Spanish. Most packets asked about developmental history (96% English, 100% Spanish), medical history (96% English, 91% Spanish), and history of educational and therapy services (95% English, 91% Spanish). Most also requested additional documents such as educational evaluations and teacher rating forms (55% English, 64% Spanish). When eliciting developmental skills, a minority used standardized instruments (e.g., M-CHAT) (23% English, 18% Spanish), while most clinics used non-standardized questionnaires (73% English, 82% Spanish).

Conclusion(s):

Among a national sample of ASD clinics, intake forms read above the recommended 5^th grade reading level for patient-facing materials. Intake forms tended to be lengthy and solicited information commonly discussed during first-time appointments. For families with language and literacy barriers, intake forms may be a disproportionate barrier to accessing ASD evaluations.