Barriers to Genetic Testing for Pediatric Medicaid Beneficiaries With Epilepsy
Eric J Kutscher1, Sucheta M Joshi2, Anup D Patel3
1Department of Healthcare Policy & Research, Weill Cornell Medicine, New York, New York.
Insights
Children with Medicaid insurance face greater challenges accessing genetic testing for epilepsy compared to those with commercial insurance. Addressing these barriers is crucial for equitable care and timely diagnosis.
Area of Science:
- Pediatric Neurology
- Medical Genetics
- Health Services Research
Background:
- Children with public insurance, such as Medicaid, encounter significant obstacles in accessing specialized medical care within the United States.
- The specific challenges faced by children with epilepsy in obtaining genetic testing based on their insurance status remain largely unexplored.
Purpose of the Study:
- To investigate the barriers and facilitators associated with genetic testing for children with epilepsy among US child neurology clinicians.
- To compare the ease of obtaining genetic testing for patients with Medicaid versus commercial insurance.
Main Methods:
- A survey was distributed to a sample of child neurology clinicians across the United States.
- Quantitative and qualitative analyses were performed on the clinicians' responses to identify patterns and themes.
Main Results:
- Clinicians reported significantly more difficulty obtaining genetic testing for patients with Medicaid compared to commercial insurance (43% vs. 12%).
- Barriers included cost, clinician knowledge, laboratory policies, and preauthorization requirements, while facilitators involved cost reduction, improved payer coverage, and enhanced clinical genetics support.
- Testing availability was positively associated with less complex tests, in-house testing, and absence of preauthorization.
Conclusions:
- Children with epilepsy covered by Medicaid experience notable barriers to genetic testing, especially for advanced diagnostic methods.
- Strategies to improve access include expanding insurance coverage, reducing patient costs, streamlining preauthorization, enhancing clinician education, and increasing the availability of clinical genetics services.
Background:
Children with public insurance (Medicaid) have increased barriers to specialty care in the United States. For children with epilepsy, the relationship between public insurance and barriers to genetic testing is understudied.
Methods:
We surveyed a sample of US child neurology clinicians. We performed quantitative and qualitative analysis of responses.
Results:
There were 302 responses (of 1982 surveyed; response rate 15%) from clinicians from 46 states, the District of Columbia, and Puerto Rico, including board-certified child neurologists (82%), resident physicians (6%), nurses (3%), and nurse practitioners (3%). Clinicians felt it was more difficult to get genetic testing for patients with Medicaid insurance compared with commercial insurance, (43% vs 12%, P < 0.05), although many felt it was about the same degree of difficulty (25%) or were not sure (20%). Increased availability of testing was associated with less complex testing (P < 0.001), in-house testing (P < 0.001), and no preauthorization requirements (P < 0.001). Qualitative responses described barriers related to cost, clinician familiarity and comfort, commercial laboratories, health care organization, payer, and patient concerns. Descriptions of facilitators included lowered cost, availability of clinical genetics expertise, clinician knowledge, commercial laboratory assistance, health care organizational changes, improved payer coverage, and increased interest by parents.
Conclusions:
Pediatric Medicaid beneficiaries with epilepsy have barriers to genetic testing, compared with children with commercial insurance, particularly for more advanced testing. Potential strategies to improve access include broader coverage, lower co-pays, increased capacity for testing outside of specialty laboratories, fewer preauthorization requirements, improved clinician education, ongoing development and dissemination of guidelines, improved availability of clinical genetics services, and continued assistance programs from commercial laboratories.
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