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Abstract Details

Randomized Trial of Telegenetic Counseling for Gene Testing in Huntington’s Disease
Movement Disorders
P1 - Poster Session 1 (8:00 AM-9:00 AM)
5-011

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.

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

 

This was a prospective, randomized, unblinded study of either teleGC or in-personGC for HD gene testing. Participants had standardized genetic counseling from a certified genetic counselor in the clinic or via HIPPA appropriate telemedicine platform first, then crossed over. A study coordinator interviewed the participant using a telehealth survey after each encounter. 

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. 

Authors/Disclosures
Deborah Hall, MD, PhD, FAAN (Rush University)
PRESENTER
Dr. Hall has received personal compensation in the range of $10,000-$49,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for American Academy of Neurology. Dr. Hall has received personal compensation in the range of $500-$4,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for Elsevier - Parkinsonism and Related Disorders. Dr. Hall has received personal compensation in the range of $500-$4,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for Annals of Neurology. The institution of Dr. Hall has received research support from Parkinson's Foundation. The institution of Dr. Hall has received research support from CHDI. The institution of Dr. Hall has received research support from Neurocrine. The institution of Dr. Hall has received research support from Uniqure. The institution of Dr. Hall has received research support from SAGE. The institution of Dr. Hall has received research support from NIH.
Marc Rosenbaum, MD Dr. Rosenbaum has nothing to disclose.
Jacob Hawkins No disclosure on file
Bichum Ouyang The institution of Bichum Ouyang has received research support from NIH.
Christa Suzanne Cooper, PA (Rush University Medical Center) No disclosure on file
Neepa J. Patel, MD (Rush University Medical Center) Dr. Patel has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Abbott Laboratories. Dr. Patel has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Abbvie Pharmaceuticals. Dr. Patel has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Boston Scientific.