Abstract: TH-PO526
Patient Satisfaction and Outcomes following a Session with a Genetic Counselor for Kidney Diseases
Session Information
- Genetic Kidney Diseases: Genotypes and Phenotypes in Cases
October 24, 2024 | Location: Exhibit Hall, Convention Center
Abstract Time: 10:00 AM - 12:00 PM
Category: Genetic Diseases of the Kidneys
- 1202 Genetic Diseases of the Kidneys: Non-Cystic
Authors
- Hager, Megan M., Natera Inc., Austin, Texas, United States
- Stein, Quinn P., Natera Inc., Austin, Texas, United States
- Hendricks, Emily, Natera Inc., Austin, Texas, United States
- Pitman, Tessa R., Natera Inc., Austin, Texas, United States
- Conway, Mary E., Natera Inc., Austin, Texas, United States
- Vance, Cassie, Natera Inc., Austin, Texas, United States
- Mcqueen, Kelsey, PKU foundation, New York, New York, United States
- Westemeyer, Margaret, Natera Inc., Austin, Texas, United States
Background
Limited data exist on patient satisfaction with genetic counseling for kidney disease provided by laboratory genetic counselors (LGCs). Here, we provide survey results designed to examine patient experiences following a Genetic Information Session (GIS) for kidney disease. The survey aimed to understand patient satisfaction and subsequent actions following a GIS. The survey also explored the role of LGCs in improving genetic counseling accessibility to patients, aligning with nephrologists’ interest in helping their patients gain access to LGC services to better understand the genetic testing result in the context of their care.
Methods
A 47-question survey was developed based on prior studies and sent to patients via email following a GIS conducted by telephone to review genetic results from the RenasightTM test (a multigene hereditary kidney panel) (Natera, Austin, TX). The collected responses were anonymous and analyzed using simple statistics.
Results
Of 1,667 GIS completed over a 1-year period, 201 responses were recorded. Overall, 95.3% of respondents indicated the GIS was valuable to them. Most respondents (64.7%) felt they had actionable steps to take following the GIS, which included: meeting with a specialist for management of extrarenal problems related to the genetic diagnosis, family planning, seeing a local genetics provider, or sharing results with relatives. Additionally, 78.9% of respondents felt they had the information needed to take additional steps related to their healthcare or family’s health following the GIS. 32.9% of respondents indicated they were unable to see a local GC and 52.0% were uncertain if it would be possible to do so.
Conclusion
This is the first study to examine patient satisfaction and outcomes following a GIS for kidney genetics, or to examine LGC service implementation in this context. This study demonstrated that LGCs provided patients with increased access to genetic counseling, valuable information that helped patients and their families navigate their clinical journeys, and acted as a complementary resource/link to providers ordering kidney genetic testing.