OBJECTIVES : Present the self-reported impact of spasticity and waning of effect of Botulinum Toxin A (BoNT-A) treatment on patients’ quality of life (QoL) and employment status.

METHODS : An Internet-based survey was conducted through Carenity, an online patient community, in several countries (France, Italy, UK, Germany, USA), from May to September 2019. Adult patients and/or caregivers of patients experiencing spasticity due to a stroke, traumatic brain injury (TBI) or spinal cord injury (SCI), having received ≥2 previous BoNT-A injections, currently treated with BoNT-A or having stopped BoNT-A treatment in the last 12 months were eligible.

RESULTS : 210 respondents (mean age 47.2 years, 52.9% male) answered the questionnaire. Overall, 42.9% of patients had spasticity due to a stroke, 30.0% due to TBI, and 27.1% due to SCI. Mean time duration since the acquired injury was 4.6 years and 2.2 years since first BoNT-A treatment. 82.9% experienced the reappearance of pre-existing symptoms between two BoNT-A injections. 52.4% of patients reported a loss of self-confidence, followed by pain (51.4%) and depression (45.7%) due related to spasticity. The impact of spasticity on patients’ QoL varied throughout the interval between 2 BoNT-A injections: it was strongest on the day before the next session. 77.8% of patients were employed (40.4% had a part-time job, 37.4% a full-time job). 51.2% reported their condition having an impact on their time spent at work. 46.6% of employed patients had to take time off from work due to recurring symptoms. 45.1% reported being less efficient at work than usual. To avoid recurring symptoms, 72.2% reported wishing injections with longer-lasting effect.

CONCLUSIONS : Spasticity is a challenging and disabling condition. Difficulties in everyday life increase when patients experience the waning of effect of BoNT-A treatments. Self-confidence and professional life are some of the most severely impacted aspects of patients’ lives.