Patient Satisfaction Following a Session With a Kidney Genetic Counselor

Genetic counseling's impact on patients with kidney disease is understudied, despite 20% of adults with kidney disease having a monogenic cause. We sought to understand whether laboratory genetic counselors (GCs) provided a positive patient experience and increased access to genetic expertise.

A 47-question survey was developed and sent to patients following a genetic information session provided by laboratory GCs employed by a genetic testing company, to review genetic results from the Renasight^TM test (a multigene hereditary kidney panel).

Over 18 months, 316 responses were recorded. Overall, 92% of respondents (228/247) indicated that the genetic information session was valuable to them. Most respondents (60%, 145/244) felt they had actionable steps to take after the session, including: meeting with an extrarenal specialist for management related to the genetic diagnosis, family planning, seeing a local genetics provider, or sharing results with relatives. In addition, 78% of respondents (193/247) felt that they had sufficient information to make decisions about their health care following their session. Only 13% of patients (34/253) were aware of their access to a local GC if the genetic information session was unavailable.

This study examined patient satisfaction following a discussion with a laboratory GC to review genetic test results for hereditary kidney disorders. This study demonstrates that laboratory GCs provide patients with increased access to genetic counseling, valuable information that helps patients and their families navigate their clinical journeys, and act as a complementary resource to providers ordering kidney genetic testing.