Skinner S, Guimond C, Butler R, Dwosh E, Traboulsee AL, Sadovnick AD.

Abstract

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.

Dwosh E, Guimond C, Sadovnick AD.

Abstract

Many questions arise when counselling multiple sclerosis (MS) patients on the effects of MS on pregnancy, and vice versa. Reassurance can often be given regarding contraception, fertility, pregnancy management, pregnancy outcome, and the risk of the child developing MS. Much more information is needed, however, on the effects and implications of MS therapies on pregnancy and breast-feeding.

Sadovnick AD, Dircks A, Ebers GC.

Abstract

Genetic factors are recognized as having important roles in both the overall etiology and the familial aggregation of multiple sclerosis (MS), leading to increased requests for genetic counselling. This paper is designed to provide familial risk data in a practical format for use during genetic counselling for MS. Depending on the amount of genetic sharing among family members, the relative risk of MS compared with that for the general population can range from 1 (adopted sibs and children of the MS proband, with whom they share no genetic material) to 190 (monozygotic co-twins of MS patients, with whom they share 100% of their genetic material). When counselling full sibs of MS patients, risks can be better calculated if information is available on the age of MS onset in the patient and whether or not one parent has MS.

Sadovnick AD, Baird PA.

Abstract

The diagnosis of multiple sclerosis (MS) is frequently made during the reproductive years, and there is increasing evidence that it has a genetic causal component. An increasing number of couples are concerned about recurrence and they request reproductive counselling at genetic clinics or from their physicians. Here we outline factors to be considered in the reproductive counselling of such individuals. These include empiric recurrence risks, the effect of pregnancy and delivery on maternal MS, overall pregnancy outcome, longterm prognosis for the affected parent, and the possibility of sexual dysfunction in couples trying to conceive a child.