Assessing genetic counseling services for people with bleeding disorders.

Genetic counselors are health care providers with specialized training in medical genetics and counseling. Recognizing the significant role of genetic counselors in working with the bleeding disorders community, the NHPCC's Genetics Work Group conducted a survey of board-certified genetic counselors—most of whom practice outside the HTC network—to better understand their needs.

The survey included questions about where and how patients with bleeding disorders access genetic counseling services; whether genetic counselors have knowledge of availability of HTC services; and their overall comfort level in counseling patients and families with inherited bleeding disorders. An e-survey was sent to the membership list of the American Board Certified Genetic Counselors. There were 143 respondents of which 118 were not affiliated with an HTC. Based on the survey we learned:

  • 55% of all respondents counseled patients outside the HTC network
  • 57% of respondents counseled patients in prenatal clinics
  • 77% reported patients were referred to them by obstetricians/gynecologists
  • 40% of the respondents did not know their nearest HTC
  • 19% of respondents were somewhat or very uncomfortable counseling a patient with a bleeding disorder.

Using this information, the Genetics Work Group is moving forward in developing a strategy to design and target future education to counselors in the prenatal setting.

To learn more about genetic counseling, please view the following documents: