Original article
Symptom Burden in Persons With Spinal Cord Injury

https://doi.org/10.1016/j.apmr.2007.02.002Get rights and content

Abstract

Jensen MP, Kuehn CM, Amtmann D, Cardenas DD. Symptom burden in persons with spinal cord injury.

Objective

To determine (1) the frequency, severity, and reported course of 7 symptoms in persons with spinal cord injury (SCI) and (2) the association between these symptoms and patient functioning.

Design

Postal survey.

Setting

Community.

Intervention

A survey that included measures of the frequency, severity, and recalled course of pain, fatigue, numbness, weakness, shortness of breath, vision loss, and memory loss, as well as a measure of community integration and psychologic functioning was mailed to a sample of persons with SCI. One hundred forty-seven usable surveys were returned (response rate, 43% of surveys mailed).

Main Outcome Measures

The frequency and average severity of each symptom was computed, and the frequencies of each type of reported course were noted. Analyses estimated the associations among the symptoms, and between symptom severity and measures of patient functioning.

Results

The most common symptoms were pain, weakness, fatigue, and numbness. All symptoms were reported to remain the same or to get worse more often than they were reported to improve once they began. Pain, weakness, fatigue, and memory loss were the symptoms most closely associated with patient functioning.

Conclusions

Patients with SCI must deal with a number of secondary complications in addition to any disability caused by the injury itself. Of 7 symptoms studied, pain, weakness, and fatigue appeared to be most common and most closely linked to patient social and mental health functioning. Research is needed to identify the causal relationships between perceived symptoms and quality of life in patients with SCI and to identify effective treatments for those symptoms shown to impact patient functioning.

Section snippets

Subject Characteristics

Participants for the current study completed a survey study that focused on pain in persons with SCI.14 As described in our previous report of this sample,14 questionnaires were mailed to 339 persons with SCI in waves from September 5, 2002, to June 25, 2004, and surveys were returned from September 12, 2002, to August 13, 2004. A primary source of subjects for this study was the University of Washington MSCIS database, and therefore most surveys (320 [78%]) were sent to persons in Washington

Response Rate and Participant Characteristics

Of 339 surveys mailed, 27 were returned because the potential participant was no longer at the address on record, 2 were returned with information indicating that the subjects were deceased, 1 was returned with a note indicating that the patient was hospitalized and could not participate, and 2 potential participants wrote to say that they declined participation. Of the 309 possible surveys that might have been completed and returned (ie, excluding the 27 incorrect addresses, 2 deceased

Discussion

This study provides new information concerning the frequency and severity of a number of symptoms and their association with functioning in persons with SCI. As predicted—and consistent with previous research—pain was very common (84%) and was reported to be more likely to stay the same or to get worse than to resolve or improve both since the onset of the symptom and within the past 6 months. We also found that each of the other 6 symptoms assessed were endorsed by at least some of the

Conclusions

Despite the study’s limitations, the current findings: (1) replicate previous research concerning the frequency and refractory nature of pain in persons with SCI; (2) indicate that other symptoms, such as weakness, fatigue, and numbness, are very common; and (3) indicate that a number of these symptoms, including pain but also weakness, fatigue, memory loss, and vision loss are associated with measures of social integration and psychologic functioning. Research is needed to replicate these

Acknowledgments

We thank Amy Hoffman, MS, Emily Phelps, BS, Kristin McArthur, BS, Lindsay Washington, BA, Laura Nishimura, BS, Silvia Amtmann, BS, and Kevin Gertz, BA, for assistance with data collection and management. We also thank Masuo Koyasu, PhD, and the Division of Cognitive Psychology in Education, Graduate School of Education, Kyoto University, for providing the physical resources that made the completion of this study possible, and 2 anonymous reviewers for their helpful comments on an earlier

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    • Cited by (0)

    Supported by the National Institute of Child Health and Human Development, National Center for Rehabilitation Research, National Institutes of Health (grant no. P01 HD33988), National Institute on Disability and Rehabilitation Research, Office of Special Education and Rehabilitative Services, US Department of Education (grant no. H133N00003), and National Institute of Arthritis and Musculoskeletal and Skin Diseases, Department of Health and Human Services, National Institutes of Health, (grant no. 1 U01 AR52171-01).

    No commercial party having a direct financial interest in the results of the research supporting this article has or will confer a benefit upon the author(s) or upon any organization with which the author(s) is/are associated.

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    Copyright © 2007 American Congress of Rehabilitation Medicine and the American Academy of Physical Medicine and Rehabilitation. Published by Elsevier Inc. All rights reserved.