caa a22 4500 605544131 CHVBK 20210128100930.0 cr unu---uuuuu 210128e20150201xx s 000 0 eng 10.1007/s10897-014-9735-2 doi (NATIONALLICENCE)springer-10.1007/s10897-014-9735-2 An Assessment of Genetic Counseling Services for Individuals with Multiple Sclerosis [Elektronische Daten] [Stephanie Skinner, Colleen Guimond, Rachel Butler, Emily Dwosh, Anthony Traboulsee, A. Sadovnick] Multiple sclerosis (MS) affects up to 1/500 Canadians. The University of British Columbia MS Clinic (UBC Clinic) is the only MS clinic in Canada (and likely internationally) that routinely offers genetic counseling to patients and their families. A typical session includes the collection of family history and demographic data, discussion of the inheritance of MS, interpretation of family-specific recurrence risks and psychosocial counseling. The aims of this study were to explore patients': 1) expectations of the genetic counseling session; 2) understanding of the etiology of MS (both pre and post-session); and 3) post-session perceptions of genetic counseling. A two-part questionnaire to assess genetic counseling services was distributed before and after sessions to all consenting patients seen during the period October 1, 2008 to February 28, 2009 inclusive. Sixty-two completed questionnaires were analysed. Genetic counseling was found to significantly increase the number of individuals who were able to correctly identify the etiology of MS (p < 0.001). Patient satisfaction with genetic counseling was high, with an average satisfaction score of 32.4/35 (92.6%). Of those who provided comments (n = 42/60) regarding the usefulness of the genetic counseling session, 95.2% reported it useful (n = 40/42). Findings suggest that genetic counseling is effective in increasing patients' knowledge of the etiology of MS and is viewed by patients as a useful service. Based on the high level of positive feedback regarding genetic counseling by the study sample, this study suggests that the services provided by genetic counselors may be beneficial for patients with MS seen in other centers. National Society of Genetic Counselors, Inc., 2014 Multiple sclerosis nationallicence Genetic counseling nationallicence Patient perceptions nationallicence Patient expectations nationallicence Patient satisfaction nationallicence Patient knowledge nationallicence Skinner Stephanie Department of Medical Genetics, University of British Columbia, Vancouver, Canada aut Guimond Colleen Department of Medical Genetics, University of British Columbia, Vancouver, Canada aut Butler Rachel Multiple Sclerosis Clinic, University of British Columbia, Vancouver, Canada aut Dwosh Emily Department of Medical Genetics, University of British Columbia, Vancouver, Canada aut Traboulsee Anthony Division of Neurology, University of British Columbia, Vancouver, Canada aut Sadovnick A. Department of Medical Genetics, University of British Columbia, Vancouver, Canada aut Journal of Genetic Counseling Springer US; http://www.springer-ny.com 24/1(2015-02-01), 46-57 1059-7700 24:1<46 2015 24 10897 https://doi.org/10.1007/s10897-014-9735-2 text/html Onlinezugriff via DOI BK010053 XK010053 XK010000 Metadata rights reserved Springer special CC-BY-NC licence nationallicence 1 research-article jats NATIONALLICENCE NATIONALLICENCE NL-springer NATIONALLICENCE 856 40 https://doi.org/10.1007/s10897-014-9735-2 text/html Onlinezugriff via DOI NATIONALLICENCE 700 1- Skinner Stephanie Department of Medical Genetics, University of British Columbia, Vancouver, Canada aut NATIONALLICENCE 700 1- Guimond Colleen Department of Medical Genetics, University of British Columbia, Vancouver, Canada aut NATIONALLICENCE 700 1- Butler Rachel Multiple Sclerosis Clinic, University of British Columbia, Vancouver, Canada aut NATIONALLICENCE 700 1- Dwosh Emily Department of Medical Genetics, University of British Columbia, Vancouver, Canada aut NATIONALLICENCE 700 1- Traboulsee Anthony Division of Neurology, University of British Columbia, Vancouver, Canada aut NATIONALLICENCE 700 1- Sadovnick A. Department of Medical Genetics, University of British Columbia, Vancouver, Canada aut NATIONALLICENCE 773 0- Journal of Genetic Counseling Springer US; http://www.springer-ny.com 24/1(2015-02-01), 46-57 1059-7700 24:1<46 2015 24 10897