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Published on: April 4, 2018
Community-oriented, hospital level genetics: a new approach to improve access for underserved communities
Yoel Gofin1,2, Fadel Tibi3,4, Eliana Fanous5
1Genetics Institute, Meir Medical Center, Kfar Saba, Israel. ygofin@gmail.com.
Insights
A community-based pediatric genetics clinic in Tayibe, Israel, improved access to genetic testing for at-risk populations. This model demonstrated higher diagnostic rates and better patient adherence than traditional hospital-based services.
Area of Science:
- Medical Genetics
- Public Health
- Community Medicine
Background:
- Certain populations face barriers to accessing genetic testing for genetic syndromes.
- Underserved communities often have limited healthcare resources, exacerbating disparities in genetic disorder diagnosis.
Purpose of the Study:
- To evaluate the effectiveness of a community-based pediatric genetics clinic model.
- To improve genetic testing access and outcomes for a high-risk population in Tayibe, Israel.
Main Methods:
- Established a community-based pediatric genetics clinic in Tayibe, staffed by a clinical geneticist.
- Referred children with suspected genetic conditions from consanguineous parents or families with multiple affected siblings.
- Collected blood samples during initial visits; tests were publicly funded, with no parental administrative burden.
Main Results:
- Assessed 30 children in the first year with zero patient loss to follow-up.
- Achieved a higher diagnostic rate (27.6%, or 42.9% excluding autism) compared to the hospital-based control group.
- Observed faster average time to test results and greater family adherence.
Conclusions:
- The community-oriented model proved successful, offering advantages over traditional hospital-based clinics.
- Key benefits include faster results, increased family adherence, higher diagnostic yield, and improved patient retention.
- This model shows promise for expanding genetic services to other underserved populations globally.
Background:
Certain populations are at increased risk for genetic syndromes but have limited access to genetic testing.
Methods:
We founded a community-based, pediatric genetics clinic in the Muslim-Arab city of Tayibe, Israel. Children with suspected genetic conditions of consanguineous parents, or families with two or more affected siblings were referred by local staff. The clinic was staffed by a Meir Medical Center (MMC) clinical geneticist. Blood samples were collected during the initial visit. Tests were publicly funded, with no parental involvement in administrative procedures required. A control group consisted of MMC pediatric genetics clinic patients.
Results:
During the first year, 30 children were assessed. No patients were lost to follow-up, compared to 8 (28%) in the MMC control group. The average time to test results was shorter in the Tayibe group and the diagnostic rate was higher, with 27.6% receiving a diagnosis (42.9%, excluding autism cases).
Conclusion:
Our first-year experience shows the success and promising results of this model, with advantages in almost all parameters, compared to the traditional, hospital-based clinic. Factors such as faster time-to-results, greater family adherence and satisfaction, and zero lost to follow-up rate suggest considering implementing this model for providing genetic services to other underserved populations.
Impact:
A community-oriented approach for a pediatric genetics clinic allowed reaching high-risk populations, with increased adherence, faster results and a higher yield. Our clinic relied solely on available public funding and staff, requiring no additional contributions. The current dogma of hospital-based genetics services should be reconsidered.
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