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Optimization of Clinical Efficiency: Evaluation of a Patient-Centered Alternative Genetics Care Provision Model for Individuals with Autism

Health Services and Implementation
  • Primary Categories:
    • Genetic Counseling
  • Secondary Categories:
    • Genetic Counseling
Introduction:
Genetic testing and counseling referrals for autism spectrum disorder (ASD) and related conditions have been steadily increasing. The outcomes of newer approaches to genetic counseling (GC) services surrounding ASD-related referrals have not been well explored. The UCSF “Genetics in Autism Program (GAP)” was implemented in order to address needs surrounding high patient demand and factors that contribute to patient/family experiences. The GAP employs two different clinic structures: traditional MG-GC (joint collaborative clinic of Medical Geneticist and GC) and GC only. The purpose of our study was aimed to evaluate whether GAP’s care model could improve wait time to see a genetics provider, increase patient capacity, and improve overall clinical efficiency. The purpose of our study was to evaluate alternative service delivery models (SDMs) that take into consideration patient referral volume and patterns, genetic counseling (GC) approaches, and tools needed to improve efficiency.

Methods:
We used an observational design to examine differences between GAP’s clinic structures and how these different structures impact patient scheduling times and clinical efficiency (test completion rate and diagnostic yield). Study participants included UCSF GAP patients evaluated from 7/13/2022 to 7/1/2024. The three primary diagnostic testing options for ASD (chromosomal microarray, exome sequencing, and Fragile X testing), were coordinated via GeneDx, a CLIA-certified genetic testing company. Inclusion criteria included patients 0-21 years of age if they had been referred for an autism-related indication and scheduled in a GC-only or joint MG-GC autism clinic visit slot within the recruitment timeframe. Exclusion criteria included patients greater than 21 years of age and referrals for non-autism related indications. Descriptive and inferential statistics were utilized to examine whether individuals attending GC only visits would have a higher test completion rate, as well as clinical efficiency and access, than the traditional MG-GC model.

Results:
Out of the 268 GAP patients, 205 (76%) patients were scheduled as GC-only clinic visits versus 63 (24%) in an MG-GC clinic visit. Our data reflects that GC-only visits were scheduled within 97 days (median: 73 days) compared to 94 days for MG-GC visits (median: 86 days) on average (p-value-0.8). The timeframe from a patient’s clinical approval of their referral to their initial scheduled appointment was similar across both clinic types, with no statistically significant difference between the two clinic structures’ wait times. Of these 268 patients, 205 patients consented to testing with orders placed at GeneDx. 147 patients completed testing, with GC-only visits reflecting a test completion rate of 70% and MG-GC only visits reflecting a 76% test completion rate. Across the clinic structures, the p-value of completed versus non-completed testing was 0.7 and 0.5, respectively, demonstrating no statistically significant differences in test completion rates based on clinic structure.

Conclusion:
There were no statistically significant differences between the two clinic models. Our findings suggest that by offering this unique care model utilizing a GC-based evaluation for ASD clinical genetics appointments, cost could be reduced, clinic access could be optimized, and clinical efficiency could potentially be streamlined. Reallocating clinic resources more effectively for providing genetics services to manage areas with high patient demand in other pediatric genetics settings should be considered. Collectively, these insights draw attention to potential areas of improvement for both clinic structures, including increasing test completion rates and clinical efficiency without compromising quality care and improving access.

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