600 surveyed for their experience
A multinational online survey of over 600 people with spasticity found that Botox injections improved their lives.
People surveyed also say that a longer acting Botox would be well received.
This backs up the results of a 2020 study of the added effectiveness combining Botox and physio treatment.
Survey questions included the burden of spasticity on the ability to work, functioning, daily-living activities, and quality-of-life, the impact of BoNT A (Botox) therapy on patients’ lives, and the potential benefits of fewer injections.
It should be noted that Botox is not suitable for everyone with HSP, even if they have spasticity. Because weakness as well as spasticity occurs with HSP, the decision as to whether or not Botox is appropriate needs to be made on a case-by-case basis in consultation with medical professionals.
Background: Patient- and caregiver-reported data are lacking on the burden of spasticity, and the impact of botulinum neurotoxin type A (BoNT-A) treatment for this condition, on patients’ daily lives. As recommended in recent guidance from the US Food and Drug Administration, online patient communities can represent a platform from which to gather specific information outside of a clinical trial setting on the burden of conditions experienced by patients and caregivers and their views on treatment options in order to inform evidence-based medicine and drug development.
Objective: The objective of our study is to characterize spasticity symptoms and their associated burdens on Western European and US patients and caregivers in the realms of work, daily activities, quality of life (QoL) as well as the positive and negative impacts of treatment with BoNT-A (cost, time, QoL) using Carenity, an international online community for people with chronic health conditions.
Methods: We performed a non-interventional, multinational survey. Eligible participants were 18 years old or older and had, or had cared for, someone with spasticity who 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 the ability to work, functioning, daily-living activities, and QoL, the impact of BoNT A therapy on patients’ lives, and the potential benefits of fewer injections.
Results: There were 615 respondents (427 patients and 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 the parents (76/188, 40%) or another family member (51/188, 27%) of their patients. Spasticity had a clear impact on patients’ and caregivers’ lives, including the 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 times per year, and 92% (393/427) of patients reported that treatment improved their overall satisfaction with life. Regarding the BoNT-A injection burden, the greatest patient-reported challenges were the cost and availability of timely appointments. Overall, 86% (368/427) of patients believed that a 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, implying that a longer-acting BoNT-A injection would be well received.
SOURCE: JMIR Public Health Surveill. 2020 Dec 7;6(4):e17928. doi: 10.2196/17928. PMID: 33284124 ©Atul T Patel, Theodore Wein, Laxman B Bahroo, Ophélie Wilczynski, Carl D Rios, Manuel Murie-Fernández. Originally published in JMIR Public Health and Surveillance (http://publichealth.jmir.org), 07.12.2020.
Perspective of an International Online Patient and Caregiver Community on the Burden of Spasticity and Impact of Botulinum Neurotoxin Therapy: Survey Study
1 Kansas City Bone & Joint Clinic, Overland Park, KS, United States.
2 Department of Neurology and Neurosurgery, McGill University, Montreal, QC, Canada.
3 Department of Neurology, Georgetown University, Georgetown, DC, United States.
4 Carenity, Paris, France.
5 Ipsen Pharma, Boulogne-Billancourt, France.
6 Neurorehabilitation Unit, Ciudad de Telde Hospital, Las Palmas, Spain.
# Contributed equally.