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Characterizing the Experience of Spasticity after Spinal Cord Injury: A National Survey Project of the Spinal Cord Injury Model Systems Centers

      Abstract

      Objective

      To characterize the qualities that individuals with spinal cord injury (SCI) associate with their experience of spasticity and to describe the relationship between spasticity and perceived quality of life and the perceived value of spasticity management approaches.

      Design

      Online cross-sectional survey.

      Setting

      Multicenter collaboration among 6 Spinal Cord Injury Model Systems hospitals in the United States.

      Participants

      Individuals with SCI (N=1076).

      Interventions

      Not applicable.

      Main Outcome Measures

      Qualities of Spasticity Questionnaire, modified Spinal Cord Injury–Spasticity Evaluation Tool (mSCI-SET), and the modified Patient-Reported Impact of Spasticity Measure (mPRISM).

      Results

      Respondents indicated that spasms most often occurred in response to movement-related triggering events. However, spontaneous spasms (ie, no triggering event) were also reported to be among the most common types. Frequency of spasms appears to decline with age. The highest frequency of spasms was reported by 56% of respondents aged <25 years and by only 28% of those >55 years. Stiffness associated with spasticity was reported to be more common than spasms (legs, 65% vs 54%; trunk, 33% vs 18%; arms, 26% vs 15%). Respondents reported negative effects of spasticity more commonly than positive effects. Based on their association with negative scores on the mSCI-SET and the mPRISM, the 5 most problematic experiences reported were stiffness all day, interference with sleep, painful spasms, perceived link between spasticity and pain, and intensification of pain before a spasm. Respondents indicated spasticity was improved more by stretching (48%) and exercise (45%) than by antispasmodics (38%).

      Conclusions

      The experience of spasticity after SCI is complex and multidimensional, with consequences that affect mobility, sleep, comfort, and quality of life. Stiffness, rather than spasms, appears to be the most problematic characteristic of spasticity. Physical therapeutic interventions to treat spasticity warrant in-depth investigation.

      Keywords

      List of abbreviations:

      mPRISM (modified Patient-Reported Impact of Spasticity Measure), mSCI-SET (modified Spinal Cord Injury–Spasticity Evaluation Tool), PRISM (Patient-Reported Impact of Spasticity Measure), QOL (quality of life), SCI (spinal cord injury), SCI-SET (Spinal Cord Injury-Spasticity Evaluation Tool)
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