Abstract

Botulinum toxin A (BoNT-A) treatment for patients with spasticity requires regular intramuscular injections. We assessed patient- and caregiver-reported burden of injections and perceived benefits of a reduction in injection frequency. Online cross-sectional survey conducted via Carenity platforms. Only patients with spasticity and receiving BoNT-A injections from France, Germany, Italy, Spain, UK and US, as well as their caregivers were invited to complete the questionnaire. 427 patients and 188 caregivers were included (mean age 42 and 39 years respectively, ∼ 50% female). The most common etiologies of spasticity were multiple sclerosis (42%), followed by stroke (20%). On a 0 to 10 scale (0 = not a problem and 10 = very problematic), patients reported cost, availability of timely appointments, and frequency of injections (mean: 5.9-6.3/10) as most problematic, while caregivers reported cost, logistics and availability of timely appointments (mean: 5.6-6.2 /10). The financial burdens reported by both patients and caregivers included transportation, parking, treatments, consultations, and time off work. The mean costs associated with a single BoNT-A injection was 255 (95% CI: 227-284) EUR for patients and 128 (95%CI: 102-155) EUR for caregivers. Overall, 78% of patients and 84% of caregivers who were working had to take time off to receive BoNT- A injections, on average 6.7 (95%CI: 5.8-7.6) and 7.7 (95%CI: 6.4-8.9) days off per year, respectively. Most participants reported they would experience multiple benefits if injections were less frequent. Overall, 92% of patients and 98% of caregivers anticipated less frequent injections to have a positive quality of life impact. Patients with spasticity and their caregivers experience burdens related to BoNT-A treatment that include direct and indirect costs, an impact on quality of life, as well as logistical constraints. Therefore, the frequency of BoNT-A injections can be an important consideration for the treatment of spasticity.

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