JMIR Publications

ABSTRACT

Background:

Data are lacking on the reported burden of spasticity for patients and caregivers, and the impact of botulinum neurotoxin type A (BoNT-A) therapy on their daily lives. Online patient communities can represent a digital platform from which to gather specific information on the burden of conditions experienced by patients and their views on treatment options.

Objective:

Using the international online community Carenity, for people with chronic health conditions, the aim of this study was to evaluate the burden of spasticity and its treatment with BoNT-A on patients and caregivers from Western Europe and the United States.

Methods:

This was a non-interventional, multinational survey. Eligible participants were ≥18 years old and had, or cared for someone with, spasticity that had been treated with BoNT-A for at least 1 year. Patients and caregivers were asked to complete an internet-based survey via Carenity; caregivers reported their own answers and answered on behalf of their patients. Questions included the burden of spasticity on ability to work, functioning, daily-living activities, and quality of life (QoL); the impact of BoNT A therapy on patients’ lives; and the potential benefits of fewer injections.

Results:

There were 615 respondents (427 patients; 188 caregivers). The mean age of patients and caregivers was 41.7 years and 38.6 years, respectively, and the most commonly reported cause of spasticity was multiple sclerosis. Caregivers were most often parents (40%) or another family member (27%) of their patient. Spasticity had a clear impact on patients’ and caregivers’ lives, including ability to work and injection costs. For patients, spasticity caused difficulties with activities of daily living and reduced QoL indices. The median number of BoNT-A injections was 4.0/year, and 92% of patients reported that treatment improved their overall satisfaction with life. Regarding BoNT-A injection burden, the greatest patient-reported challenges were cost and availability of timely appointments. Overall, 86% of patients believed reduced injection frequency would be beneficial. Caregivers answering for their patients gave largely similar responses to those reported by patients.

Conclusions:

Spasticity has a negative impact on both patients’ and caregivers’ lives. All respondents reported that BoNT A treatment improved their lives, despite the associated challenges. Patients believed that reducing the frequency of BoNT-A injections could alleviate practical issues associated with treatment.