An Assessment of Genetic Counseling Services for Individuals with Multiple Sclerosis
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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.
KeywordsMultiple sclerosis Genetic counseling Patient perceptions Patient expectations Patient satisfaction Patient knowledge
This work was funded in part by the Multiple Sclerosis Society of Canada Scientific Research Foundation.
This study was partial fulfillment of Stephanie Skinner’s study for a M.Sc. degree in Genetic Counseling at the University of British Columbia. The authors thank the UBC MS Clinic Neurologists (V. Devonshire, S. Hashimoto, J. Hooge, L. Kastrukoff, J. Oger, A.L. Sayao), allied professional and Support staff and especially the MS patients and their family members. The authors gratefully acknowledge the statistical support provided by Boris Kuzeljevic.
Conflict of Interest
Authors Skinner, Guimond, Butler, Dwosh, Traboulsee and Sadovnick declare that they have no conflict of interest with respect to this manuscript.
Funding and Disclosures
ALT has received grant funding from Genzyme and Roche; served on data safety monitoring board for Merck Serono and clinical trial steering committee for Roche; and received honoraria or travel grants from Teva Canada Innovation, Roche, Merck/EMD Serono, Genzyme, MedImmune and Chugai Pharmaceuticals.
ADS is a consultant for Novartis and receives travel funds and consulting fees but has no company shares; and receives travel funds, honoraria and unrestricted educational funds from Biogen Idec, Teva Neuroscience, and Merck Serono.
SS, CG, RB and ED report no disclosures.
All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all patients for being included in the study.
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