To determine the feasibility and patient satisfaction of telegenetic counseling for Huntington’s Disease (HD). 

Genetic counseling is necessary for pre-symptomatic or symptomatic HD genetic testing, but the lack of access to counseling due to geography or expense is a critical gap for many patients. The hypothesis of this study was that there would be no difference in patient satisfaction between telegenetic counseling (teleGC) or in-person counseling (in-personGC) for HD testing.

19 in-personGC and 15 teleGC participants were included: 68% women, 41±15 yrs, 80% white, 10% Hispanic, and +CAG=45±4.4 (n=15) (P>0.1). All participants were satisfied with their initial counseling experience when asked to rate on a scale of 1-10 (median 10/10, p=0.94). The majority of symptomatic HD participants (5/7) preferred in-person GC.  The main advantage of teleGC was reduction in travel time for the in-personGC first (n=16) and teleGC first (n=11) groups.  Technical challenges were reported (n=11) and the counseling slide deck was difficult to see (n=4) with teleGC. Visually seeing the genetic counselor improved understanding for both in-personGC (n=10) and teleGC (n=8) participants. Participants felt they were able to pick up on emotional cues (n=33) and were comfortable asking questions (n=34).

Telegenetic counseling is a feasible option for HD gene testing, if patients are able to overcome technical issues.  Having a video visit, rather than a phone call, should be considered when using telegenetic counseling for HD gene testing. In-person counseling may be preferred to increase understanding of the material in some patients, such as motor manifest HD.