Category: Parkinson's Disease: Genetics
Objective: To develop a method to improve the efficiency of genetic counseling for PD in a multiethnic cohort, with focus on development and assessment of an adjunctive video and pre-test assessment that includes systematic family history information.
Background: PD is a heterogeneous disorder with multiple identified genetic contributors. The emergence of clinical trials for patients with LRRK2 or GBA mutations holds tremendous promise, and the knowledge of genetic status is necessary for study inclusion. Thus, there is a need for counseling and education about PD genetics. As there is a paucity of genetic counselors, many clinicians might be tasked with counseling and ordering testing. It is therefore important to develop supplemental care models and educational aids, especially with regards to pre-test counseling and assessment.
Method: An educational video and pre-test assessment on the genetics of PD, family history, and attitudes toward testing was developed using systematic review of the literature and genetic counselor and clinician input. Subjects will either view the educational video followed by brief phone counseling with a genetic counselor or have an in-person genetic counseling session. Pre- and post-test questionnaires will be administered for both arms. The primary outcomes are knowledge, attitudes, satisfaction with knowledge and the decision to receive genetic results.
Results: Opportunities for intervention will be identified, including additional education through the video pre-test assessment with operationalized assessment of family history and pedigree generation. Methodology, including incorporation of some of the key educational points as well as preliminary results, will be presented.
Conclusion: As the demand for genetic counseling and testing for PD increases, there is a need to better understand the knowledge and attitudes of patients towards testing as well as the utility of alternate modes of providing genetic counseling through video materials and improved pre-counseling assessments.
To cite this abstract in AMA style:
S. Elango, V. Katsnelson, D. Raymond, S. Rodriguez, T. Lin, N. Urval, R. Ortega, S. Bressman, R. Saunders-Pullman. The development and application of an adjunct genetic counseling pre-test assessment and video intervention for Parkinson’s disease (PD) [abstract]. Mov Disord. 2020; 35 (suppl 1). https://www.mdsabstracts.org/abstract/the-development-and-application-of-an-adjunct-genetic-counseling-pre-test-assessment-and-video-intervention-for-parkinsons-disease-pd/. Accessed June 15, 2025.« Back to MDS Virtual Congress 2020
MDS Abstracts - https://www.mdsabstracts.org/abstract/the-development-and-application-of-an-adjunct-genetic-counseling-pre-test-assessment-and-video-intervention-for-parkinsons-disease-pd/