Impact of spasticity and botulinum toxin-A injections on the daily life of patients and their caregivers: Results from an international online survey

Abstract

Spasticity can have a considerable impact on patients’ lives, causing pain and loss of mobility with resultant burden to patients and caregivers. Botulinum toxin-A (BoNT-A) injections have proven to be an efficacious and well-tolerated treatment for spasticity. The objectives were: (1) to measure the impact of spasticity on patients’ and caregivers’ employment and quality of life, (2) to better understand patient perceptions of BoNT-A injections. A survey is currently being conducted by Carenity (an online patient community) in the US and Europe (France, Germany, Italy, Spain, UK). A committee (a patient, 3 neurologists and a physiatrist) approved the questionnaire. This analysis reports data from 333 participants enrolled to date, (target: 600) including 210 patients with spasticity receiving BoNT-A injections, and 123 caregivers. The respondents’ spasticity was caused by multiple sclerosis (40%), stroke (22%) and spinal cord injury (9%). Mean age was 47.6 years and 54% of patients were women. Impact on work: – 50% of patients work part-time or do not work due to their condition; – 32% of caregivers limit their work activity to help the patient; – professional life was the most affected area (mean = 6.9/10, 0 = no impact, 10 = a great impact). Spasticity also had an impact on patients’ leisure activities (mean = 6.7/10), self-esteem (mean = 6.6/10) and sexual life (mean = 6.6/10). The overall level of satisfaction regarding BoNT-A injections was acceptable (mean = 5.9/10), despite the inconvenience associated with the injections, including pain during/after injections (mean = 4.1/10), logistic constraints such as travel (mean = 3.8/10) or difficulties related to frequency of injections (mean = 3.5/10). Seventy-one percent of respondents would feel benefits from having 1 or 2 fewer injections per year. These results emphasize the multifaceted impact of spasticity on patients’ and caregivers’ quality of life. Patients receiving BoNT-A injections are mostly satisfied with their treatment, but report some inconvenience and would prefer less frequent injections.