An international survey of patients living with spasticity (original) (raw)
Related papers
Journal of Rehabilitation Medicine
The main aim of this study was to de termine the utilization patterns and effectiveness of onabotulinumtoxinA (Botox®) for treatment of spasticity in clinical practice. Design: An international, multicentre, prospective, observational study at selected sites in North Ame rica, Europe, and Asia. Patients: Adult patients with newly diagnosed or es tablished focal spasticity, including those who had previously received treatment with onabotulinum toxin A. Methods: Patients were treated with onabotulinum toxinA, approximately every 12 weeks, according to their physician's usual clinical practice over a period of up to 96 weeks, with a final follow-up interview at 108 weeks. Patient, physician and caregiver data were collected. Results: Baseline characteristics are reported. Of the 745 patients enrolled by 75 healthcare providers from 54 sites, 474 patients had previously received onabotulinumtoxinA treatment for spasticity. Lower limb spasticity was more common than upper limb spasticity, with stroke the most common underlying aetiology. The ShortForm 12 (SF12) health survey scores showed that patients' spasticity had a grea ter perceived impact on physical rather than mental aspects. Conclusion: The data collected in this study will gui de the development of administration strategies to optimize the effectiveness of onabotulinumtoxinA in the management of spasticity of various underlying aetiologies.
Clinical Understanding of Spasticity: Implications for Practice
Rehabilitation Research and Practice, 2014
Spasticity is a poorly understood phenomenon. The aim of this paper is to understand the effect of spasticity on daily life and identify bedside strategies that enhance patient's function and improve comfort. Spasticity and clonus result from an upper motor neuron lesion that disinhibits the tendon stretch reflex; however, they are differentiated in the fact that spasticity results in a velocity dependent tightness of muscle whereas clonus results in uncontrollable jerks of the muscle. Clinical strategies that address function and comfort are paramount. This is a secondary content analysis using a qualitative research design. Adults experiencing spasticity associated with neuromuscular disorder were asked to participate during inpatient acute rehabilitation. They were asked to complete a semistructured interview to explain and describe the nature of their experienced spasticity on daily basis. Spasticity affects activities of daily living, function, and mobility. Undertreated spasticity can lead to pain, immobility, and risk of falls. There were missed opportunities to adequately care for patients with spasticity. Bedside care strategies identified by patients with spasticity are outlined. Uses of alternative therapies in conjunction with medications are needed to better manage spasticity. Patient reports on spasticity are important and should be part of clinical evaluation and practice.
Understanding spasticity from patients’ perspectives over time
Journal of Advanced Nursing, 2012
Aim. The purpose of this paper was to report patients' understanding and perceptions of personal spasticity experiences over time. Background. Spasticity is an unpleasant and poorly understood experience associated with upper motor neuron disease. Design. An original qualitative study was conducted in 2008-2009. Method. Content analysis was used to extract meaning from the responses of 23 patients to semi-structured interviews during 7 days of acute rehabilitation for neurological diseases associated with spasticity. Findings. Patients used words reflecting muscle tone and spasms to describe spasticity. Themes reflecting the spasticity experience over time were Ambiguous Experiences, Navigating Symptom Experience, Wounded Self, and Unending Journey. Conclusion. Spasticity as experienced is complex, involving a wide range of unusual sensations sensitive to stressors in everyday life. Clinical evaluation of spasticity should include patient reports. Knowledge about patient word choice used to describe spasticity can enhance communication with healthcare providers.
Demystifying spasticity in primary care
2019
OBJECTIVE To raise awareness of spasticity in primary care and clarify how to identify, diagnose, and manage it effectively and efficiently in patients with pre-existing neurologic conditions. SOURCES OF INFORMATION PubMed was searched for articles published from 1970 to May 2018 using the terms spasticity, spasticity in physical disability, spasticity in mobility impairment, and spasticity with family medicine or primary care. Other relevant guidelines and resources were reviewed and used. MAIN MESSAGE Spasticity is a common secondary complication in conditions such as spinal cord injury, multiple sclerosis, stroke, cerebral palsy, and other neuromuscular physical disabilities and can have a negative effect on health and quality of life. Factors such as inconsistent definition, poorly understood mechanism, and relatively low prevalence make spasticity seem like a daunting condition to manage. Furthermore, its variable presentation and effect on a patient's quality of life, and ...
Long-term modification of spasticity
Journal of Rehabilitation Medicine, 2003
This review of the long-term management of spasticity addresses some of the clinical dilemmas in the management of patients with chronic disability. As it is important for clinicians to have clear objectives in patient treatment, the available treatment strategies are set out. Why is it important to treat spastic patients and what treatment does one use? When should one consider a change in the strategy and why is it necessary to have a clear discharge policy from the service to avoid serious logistic problems? The review reiterates the role of physical treatment in the management and thereafter the maintenance of patients with spasticity. There are now a number of good papers on the use of botulinum toxin in spasticity, but this review sets out their context in clinical management and briefly mentions the use of phenol nerve blockade and intrathecal baclofen in clinical practice. Finally, how does one justify the use of an agent regarded as expensive? It is important to use outcome measures that are valid and sensitive to change, and an example is given of ways of demonstrating benefit.
Long-term modification of spasticity 61
This review of the long-term management of spasticity addresses some of the clinical dilemmas in the management of patients with chronic disability. As it is important for clinicians to have clear objectives in patient treatment, the available treatment strategies are set out. Why is it important to treat spastic patients and what treatment does one use? When should one consider a change in the strategy and why is it necessary to have a clear discharge policy from the service to avoid serious logistic problems? The review reiterates the role of physical treatment in the management and thereafter the maintenance of patients with spasticity. There are now a number of good papers on the use of botulinum toxin in spasticity, but this review sets out their context in clinical management and briefly mentions the use of phenol nerve blockade and intrathecal baclofen in clinical practice. Finally, how does one justify the use of an agent regarded as expensive? It is important to use outcome measures that are valid and sensitive to change, and an example is given of ways of demonstrating benefit.
Current Therapeutics, 2001
GPs play an important role in identifying and managing spasticity, a relatively common problem following lesions of the CNS. This article will discuss some of the clinical features and pathophysiology of spasticity and look at the latest treatment options and indications. (author abstract)
Clinical Features of Spasticity and Principles of Treatment
Clinical Evaluation and Management of Spasticity, 2001
Clinical Evaluation and Management of Spasticity aims to be an authoritative resource for practitioners interested in learning more about the management of spasticity. Given the recent advances in treatment, there has for some time been a need for a text devoted entirely to this topic. This is the first such volume.
2020
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 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. 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.