| Background. Spasticity is a common and uncomfortable symptom associated with upper motor neuron disorder. Confusion regarding the definition, pathophysiology, medical and lay terminologies complicates the understanding of spasticity. Despite the fact that spasticity is a lived experience, there are very few studies of patient accounts and perceptions of spasticity. Discrepancy between examiner assessment and patient rating has been reported.;Objective. The purpose of this study was to understand the nature of spasticity from the patient and examiner perspectives over time. Specific aims were to: (a) obtain the vocabulary used by patients to describe spasticity, (b) describe the temporal nature of spasticity individual trajectory graphically and analytically, and (c) explore the correspondence between patient and examiner rating of spasticity.;Method. Adults experiencing spasticity associated with neuromuscular disorder were asked to participate during in-patient acute rehabilitation. They were asked to: (a) use a Numeric Rating Scale (0-10) to rate their spasticity on an hourly basis while awake; (b) participate in daily spasticity evaluation using the Modified Ashworth scale by a researcher who was also a clinician; and (c) complete a semi-structured interview to explain and describe the nature of their experienced spasticity on a daily basis. Content analysis, exploration of graphical individual trajectories, modeling trajectories and examination of the association between patient and examiner evaluation of spasticity using hierarchical generalized linear modeling were employed for data analysis.;Results. A total of 23 participants were enrolled in this study. About half were women who had experienced neurological disorders. Average age was 42 (SD 15.7). Participants provided 1976 spasticity ratings. Participants described spasticity as: spasm, tight, stiff, and rubber-band like. Self-ratings using Numeric Rating Scale score showed that spasticity varied throughout 24 hours. Spasticity was highly variable over time and individual change in spasticity was nested in social routines of daily activities and biological clocks. Participants identified stress, which is not routinely evaluated in the examination of spasticity, to be associated with increased spasticity. Patient and examiner understanding of spasticity was often quite different. Correspondence threshold between MAS and NRS ratings were reported using HGLM model. Frequently used vocabulary based on NRS scores provided insight into patient choices of words when rating their spasticity on NRS scale.;Discussion. Spasticity is a lived experience. Patient reports on spasticity are important and should be part of clinical evaluation. Knowledge about patient word choice used to describe spasticity can enhance communication. Stress was noted to be a predictor of spasticity not routinely evaluated in clinical practice. Its role must be explored further to determine the efficacy of complementary modalities in the management of spasticity. Explicit understanding of temporal patterns must be further explored so the individual care can be tailored to meet individual needs over time for better outcomes. |
