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

Abstract

OBJECTIVE\nTo characterize the qualities that persons 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.\n\n\nDESIGN\nOnline cross-sectional survey.\n\n\nSETTING\nMulti-center collaboration among six Spinal Cord Injury Model Systems (SCIMS) hospitals in the United States.\n\n\nPARTICIPANTS\n1,076 individuals with SCI.\n\n\nINTERVENTIONS\nNot 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).\n\n\nRESULTS\nRespondents indicated that spasms most often occurred in response to movement-related triggering events, however, spontaneous spasms (i.e., 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 under 25 years old and by only 28% of those over 55. Stiffness associated with spasticity was reported to be more common than spasms (legs: 65% vs 54%, trunk: 33% vs 18% and arms: 26% vs 15%, respectively). 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 five 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%).\n\n\nCONCLUSIONS\nThe 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.