Objective: We aim to explore the peculiarities of women with dystonia, especially the reciprocal influence in reproductive life.

Background: Dystonia causes significant disruption to quality of life and non-motor symptoms. No studies have analyzed whether the impact differs between women and male subjects, and information regarding the influence in reproductive life is scarce.

Method: We present preliminary results of an ongoing transversal descriptive study based on an online questionnaire supplied in two Movement Disorders Units and the Spanish Association of Dystonia (Distonía España-ALDE). Life Satisfaction Scale (ranging 5-25) was used.

Results: We included 40 women and 19 men of similar mean age (55±12 years women, 55±9 men), with diagnosis of focal (45% women, 37% men), segmental (48% women, 42 % men) or generalized dystonia (7.5% women, 21% men). Tobacco use (15% vs 21%), anxiety (25% vs 42%), depression (18% vs 21%), traumatic life events (33% vs 32%), physical trauma (20% vs 11%) prior to dystonia onset were reported in both groups. Most common treatments were botulinum toxin in isolation (45% women, 11% men) or combined with oral drugs (35% and 53%), with single cases of deep brain stimulation in each group. Disability precluding paid work was frequent in both groups (33% women, 37% men). Impact on both social and family life (43% women 53% men) was common. Stigma due to dystonia was very common (55% women, 69% men). Pain was a frequent comorbidity (58% and 48%) in both groups, while communication problems were more frequent in men (42% vs 28%). There was a non significant trend towards worse scores in life satisfaction scale in men (13±0.5 vs 15±0.2).

As for reproductive life, 58% of women did not report changes in dystonia in relation to menstruation, while it worsened dystonia in 13%. Five pregnancies with dystonia were reported: in all of them treatments for dystonia were discontinued, in two cases dystonia improved, in two cases it remained the same, and in one case it worsened.

Conclusion: The preliminary results of our study on adult patients with mainly focal or segmental dystonia reveal a high repercussion in family, social, work life, and stigma, without significant differences between sexes. Most women did not report changes of dystonia with menstruation, while pregnancy generally improved the condition, even when treatments were universally discontinued.

« Back to 2023 International Congress

MDS Abstracts - https://www.mdsabstracts.org/abstract/dystonia-and-women-impact-on-reproductive-life-life-satisfaction-and-psychosocial-factors/