An international survey of caregivers and adults with neurological diseases, including multiple sclerosis (MS), revealed that spasticity is a hidden burden, having a negative effect on the ability to perform everyday tasks, and that relieving its symptoms significantly improves patients’ quality of life.
Approximately 84% of patients with MS experience some form of spasticity, a condition in which certain muscles are continuously contracted, causing stiffness or tightness and interfering with normal movement.
Spasticity also is common among patients with other neurological conditions like stroke, traumatic brain/spinal cord injury, or cerebral palsy. Overall, it is estimated that spasticity affects about 12 million people worldwide.
The survey involved 615 participants (69% patients and 31% caregivers) older than 18, and was conducted in six different countries (U.S., Germany, Spain, United Kingdom, Italy, and France) in association with Carenity, a social media platform for people living with chronic diseases.
The goals of the survey were to assess the burden of spasticity on patients’ lives (ability to work, functioning, and quality of life), and the effect of at least one-year treatment with botulinum toxin type A (BoNT-A).
BoNT-A is a toxin that blocks nerve activity in muscles, allowing them to relax. The therapy often is used in the management of MS-related spasticity.
Results of the survey showed that at least 88% of patients experienced difficulties in at least one aspect of their daily lives as a result of spasticity — 98% reported difficulties carrying something, 97% had difficulties walking, and 96% had problems driving.
The survey also showed that 44% of the patients did not work or worked only part-time due to their disease, and 29% of caregivers did not work or worked part-time to take care of patients.
The overall quality of life was found to be severely diminished by spasticity, and about 50% of the survey respondents reported it had a great effect on their quality of life, namely in terms of sexual activity, self-esteem, and mental health.
“Spasticity is not always the first symptom that is managed in adult or children central nervous system insult, but it has a long term and chronic profound impact on fundamental aspects of patients and caregivers’ daily lives. The hallmark of good patient care is providing access to effective treatments that can control symptoms, and improve quality of life,” Alexandre Lebeaut, MD, said in a press release. Lebeaut is executive vice president of research and development, and chief scientific officer at Ipsen.
Concerning treatment, the survey showed that 94% of patients reported improved overall life satisfaction thanks to reduced muscle spasms upon receiving BoNT-A. Furthermore, 82-96% reported improvements in daily tasks and quality of life domains, such as anxiety, personal relationships or sexuality.
Nonetheless, BoNT-A treatment carried some burden for patients: 78% had to take time off from work to get the injections, 77% reported the treatment represented a financial burden (especially due to transportation costs), and 73% reported issues with the treatment, such as inconvenience of appointments and the frequency of injections.
Nine of 10 respondents said they wanted long periods without spasticity symptoms, and expected that would have a positive impact on their quality of life.
“The Carenity survey as well as observational studies like ULIS-III5 [NCT02454803, a trial on attainment of person-centered goals after BoNT-A treatment for adult upper limb spasticity] provide priceless patient insights to clinicians,” said Jorge Jacinto, head of department of Adult Neuro-rehabilitation, Centro de Medicina de Reabilitação de Alcoitão, Portugal.
“It will allow us to not only consider the burden of spasticity in its entirety, but also rethink the treatment paradigm to improve patients’ and caregivers’ quality of life,” Jacinto concluded.