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BackgroundPatient- 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. ObjectiveThe 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. MethodsWe performed a noninterventional, 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. ResultsThere 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. ConclusionsSpasticity 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.

Oral corticosteroids (OCS) are frequently used as relievers for acute asthma and controllers for severe asthma. However, the relief offered by OCS is counterbalanced by adverse effects. We aimed to describe how patients perceive OCS treatment benefits and risks, and how this could affect their adherence to the treatment. Patients aged ≥18 years with asthma registered with Carenity, an online patient community, were invited to respond to a questionnaire containing 35 closed and 3 open questions to assess their asthma and perceptions of OCS. 268/300 respondents were receiving or had received OCS for asthma (58 for long-term use and 107 for short-term use). The mean age at diagnosis was 21.3 years. 66% had uncontrolled asthma (GINA control score 3 or 4). Although 42% perceived OCS to be efficacious, 46% mentioned adverse effects. Respondents were mostly satisfied with OCS (median = 7.0/10), particularly for efficacy (median = 8.0/10). Respondents reported having strategies to avoid OCS, mainly because of adverse effects. 26% of respondents had previously reduced or stopped OCS; this proportion was 22% for short-term OCS users and 36% for long-term users. 15% of the respondents not receiving long-term OCS would take the treatment without doing anything else if long-term OCS were prescribed; 42% would seek an alternative treatment. OCS for asthma is perceived efficient but associated with adverse effects. Patients seek alternative treatment. [ABSTRACT FROM AUTHOR]