OBJECTIVES : CD has a negative impact on patients’ lives. BoNT-A is an effective treatment for CD but with fluctuating effects over time, the effects of BoNT-A beginning to diminish at the end of a treatment cycle. The objective of this study was to measure the impact of CD symptoms and the reappearance of symptoms with waning BoNT-A effects on patients’ employment.

METHODS : An Internet-based survey was conducted through Carenity, an online patient community, in France, Germany, Italy, UK and USA, from May to September 2019. Adult patients with CD having received ≥2 previous BoNT-A injections, currently treated with BoNT-A or having stopped BoNT-A treatment in the last 12 months were included.

RESULTS : 209 respondents (80.9% women, mean age 49.7 years, CD mean duration 9.8 years since first symptom/6.5 years since diagnosis, 90.0% received ≥4 BoNT-A treatments since start) answered the online questionnaire. 73.4% of respondents were employed (40.1% had a full-time job, 33.3% a part-time job). 48.4% reported CD having an impact on their time spent at work (29.7% of those working part-time and 18.7% unemployed) and 54.1% reported difficulties at work due to CD. The re-emergence of CD symptoms prior to next BoNT-A injection affected work capacity, with 66.4% being uncomfortable at work, and 65.6% reporting reduced work efficiency. 33.6% reported having to take time off work when CD symptoms recurred and 24.4% reported reduction in their work hours or having to work from home (16.8%). Respondents rated ability to work 2.7/10 (0=no symptom; 10=very strong symptom) at BoNT-A peak effect, 5.1/10 at waning of BoNT-A effect and 7.0/10 on the day before the next injection.

CONCLUSIONS : Despite the efficacy of BoNT-A, CD patients continue to experience a negative impact on their ability to work, that is enhanced at the end of their treatment cycle as symptoms reappear.