Patient experiences in receiving telegenetics care for inherited cardiovascular diseases

Authors

Dani S. Temares, Genetic Counseling Graduate Program, Vagelos College of Physicians and Surgeons, Columbia University, New York, NY, USA.
Lusha W. Liang, Department of Medicine, Vagelos College of Physicians and Surgeons, Columbia University, New York, NY, USA.
Amanda L. Bergner, Genetic Counseling Graduate Program, Vagelos College of Physicians and Surgeons, Columbia University, New York, NY, USA.
Muredach P. Reilly, Department of Medicine, Vagelos College of Physicians and Surgeons, Columbia University, New York, NY, USA.
Isha Kalia, Division of Hematology and Oncology, George Washington University Medical Faculty Associates, 2150 Pennsylvania Ave NW, G-414, Washington, DC, 20037, USA. ikalia@mfa.gwu.edu.

Document Type

Journal Article

Publication Date

4-1-2024

Journal

Journal of community genetics

Volume

15

Issue

2

DOI

10.1007/s12687-023-00693-5

Keywords

Cardiogenetics; Follow-up care; Telegenetics

Abstract

Telegenetics played an important role in providing genetic services to patients during the COVID-19 pandemic. In particular, at our institution, it enabled us to expand our genetic counseling and testing services to non-local family members of patients outside of our prior catchment area. However, as telegenetics continues to be utilized even as social distancing is no longer required, further information is needed regarding the impact of this modality on patient experience within cardiogenetics. This study qualitatively explored the experiences of 12 genotype positive individuals who underwent genetic counseling and testing via telegenetics during the first 22 months of the COVID-19 pandemic and compared the experiences of local vs. non-local patients. Both local and non-local participants discussed similar benefits and drawbacks to the use of technology in telegenetics and overall found the use of telegenetics and at-home genetic testing to be convenient. Both groups also noted having to make changes in their daily lives and future planning as a consequence of the positive genetic testing results. However, access to follow-up care differed between local and non-local participants, with more local participants having scheduled and attended appointments with the appropriate medical providers compared to non-local participants. Supplying non-local patients access to remote cardiogenetic testing may therefore require careful consideration in how to ensure proper follow-up care for genotype positive patients and may necessitate the involvement of national professional or patient-centered organizations to help streamline the referral process.

APA Citation

Temares, Dani S.; Liang, Lusha W.; Bergner, Amanda L.; Reilly, Muredach P.; and Kalia, Isha, "Patient experiences in receiving telegenetics care for inherited cardiovascular diseases" (2024). GW Authored Works. Paper 4851.
https://hsrc.himmelfarb.gwu.edu/gwhpubs/4851

Department

Clinical Research and Leadership