Pain and Spinal Cord Injury: Examination of the Relationship Between Pain and Health and Function Among a Sample of People with Newly-Diagnosed SCI
Jennifer L. Rowland, PhD, PT, MPH ; and Glen W. White, PhD
Abstract
Pain is a commonly reported problem for people with spinal cord injuries (SCIs), affecting up to two-thirds of this population. Because of post-injury mobility and sensory limitations, this group is at risk for decreased quality of life, including the limited ability to perform self-care activities and to integrate into the community. As people with SCI age, the effects of pain can worsen, decreasing their ability to live independently and to fully participate in society. The purpose of this paper is to examine the relationship between pain and health and function among a sample of 67 people with newly-diagnosed SCI who were originally recruited for a secondary condition risk assessment and prevention study at five Model SCI Systems Centers. Pain was one of five secondary conditions studied among this group. Results presented in this paper will focus on relationships between pain and health and function according to participant responses on an SF-36 Health Survey Enabled version, which was administered during the original risk assessment study. One hundred percent of female participants, and 93.9% of male participants responded affirmatively to the question: “Do you have pain?” which was part of a written survey probing secondary condition development administered prior to the SF-36 Enabled. Of those reporting pain, the highest percentages of functional limitations were reported in performing activities such as bathing or dressing (60%) and work limitation (kind of work limited: 73%; difficulty performing work: 65%). Other primary limitations included activities such as ‘going up’ stairs and ‘going’ more than a mile, several blocks, or one block. The largest percentage reporting physical pain characterized it as being moderate (39%). Results of these analyses provide evidence that pain is associated with decreased function, although causality cannot be determined from these data.
Key Words: spinal cord injury, pain, health, function
Introduction
For people with SCI, pain is a common and serious condition. Pain prevalence reports for this population have ranged from 33% to 94% depending on the sample and methods used in data collection (Demirel, Yilmaz, Gencosmanglu, & Kesiktas, 1998; Siddall, Taylor, McClelland, Rutkowski, & Cousins, 2003). It is estimated that as many as two-thirds of people with SCI report having chronic pain, and up to one-third of those reporting pain classify it as severe (Bonica, 1991; Ehde, Jensen, Engel, Turner, Hoffman, & Cardenas, 2003; Finnerup, Johannesen, Sindrup, Bach, & Jensen, 2001; Siddall, Yezierski, & Loeser, 2002). There is evidence that pain has a negative impact on quality of life for people with SCI (Budh et al., 2003; Rintala, Loubser, Castro, Hart, & Fuhrer, 1998; Turner & Cardenas, 1999; Turner, Cardenas, Warms, & McClellan, 2001). Indications from recent research focusing on adults with SCI also provides evidence that pain adversely affects social integration, and that higher pain intensity is associated with a decreased ability to perform basic activities of daily living (Jensen, Hoffman, & Cardenas, 2005).
Chronic pain is a secondary condition that has been shown to significantly increase with age (Putzke, Barrett, Richards, & DeVivo, 2003). Therefore, finding ways to accurately measure pain and its effects on quality of life are especially important, given improvements in medical care over the past few decades that have increased survival rates for people with SCI (Anson & Shepherd, 1996; DeVivo, Kartus, Stover, Rutt, & Fine, 1990).
The purpose of this paper is to examine the relationship between reported pain and health and function items from the SF-36 Enabled version among a group of people with newly-diagnosed SCI who were recruited for a secondary condition risk assessment and prevention study at five Model SCI Systems Centers. Pain was one of five secondary conditions studied among this group.
Method
Sample Characteristics
Mean sample age was 35.43 years (SD 13.53), and 73% were males. Nearly three-fourths of the sample was White (73%), approximately one-fourth were Black (24%), and 3% were Hispanic. A higher percentage of participants had cervical injuries (61%) as compared with thoracic and lumbar injuries (39%), and 70% of the sample had complete injuries. Approximately three-fourths of the sample reported their injuries were not work-related (76%), and the primary mode of injury for all participants was motor vehicle accidents (36%). Over half of the sample had achieved an education level of high school (63%), and 30% reported having taken at least some college coursework. Six percent had completed some type of vocational or technical school training. All participants had been diagnosed with SCI 6 to 9 months before entering the study and were recruited through five Model Spinal Cord Injury Systems Centers: (1) Shepherd Center’s Crawford Research Institute in Atlanta; (2) The Institute for Rehabilitation Research (TIRR) in Houston; (3) Missouri Model Spinal Cord Injury System (MOMSCIS) in Columbia, Missouri; (4) Kessler Rehabilitation Center in West Orange, New Jersey; and (5) University of Alabama-Birmingham’s Spain Rehabilitation Center. The original study tested the effectiveness of an Internet-based intervention to reduce secondary condition risk for pain, pressure sores, urinary tract infections, weight gain and deconditioning, and depression. Results of the original study are published elsewhere (Rowland, White, & Wyatt, in press).
Procedures
Written questionnaires that included the SF-36 Enabled version were administered as pre- and post-test measures at the Model Systems Centers, and three times in the interim year between site visits as telephone surveys from the University of Kansas’ Research & Training Center on Independent Living. Some post-test measures were administered by mail if the participant was unable to return to the Center site. In addition to the SF-36 Enabled component, the survey included questions that probed which secondary conditions, including pain, had developed for each participant since the last survey.
Materials
To measure health and function, this study used a modified, or enabled, version of the SF-36 (Ware & Sherbourne, 1992). Froelich-Grobe, Andresen, Caburnay, Roberts, and White (2003) tested a modified, or enabled, version of the SF-36 that had been developed by Meyers and Andresen (2000). The Enabled version included changes reflecting the use of assistive devices for mobility and described activity examples that included people with mobility impairments. The original stem question was: “The following are activities you might do during a typical day. Does your health now limit you in these activities? If so, how much?” The Enabled version stem was: “The following are activities you might do during a typical day using your normal assistive devices (wheelchair/cane/prosthetic). Does your health now limit you in these activities? If so, how much?” For the enabled version, five activity questions were changed (see Table 1).
Results
Among the 100% of female and 93.9% of male participants reporting pain, the highest percentages of functional limitations were reported in performing activities such as bathing or dressing (60%) and work limitation (kind of work limited: 73%; difficulty performing work: 65%). Other primary limitations included activities such as ‘going up’ stairs and ‘going’ more than a mile, several blocks, or one block. The largest percentage reporting physical pain characterized it as being moderate (39%).
Pain and SF-36 Enabled
Percentages of physical pain reported in the past four weeks ranged from 39% who reported moderate pain, to 3% who reported very severe pain (see Graph 1). Note that the statistic identifying 95% of participants reporting pain was not obtained from this SF-36 enabled question, but was in response to a list of separate questions asked prior to administering the SF-36 enabled. For pain, this question was: “Do you have pain?” and was coded as “occurrence” or “non-occurrence.”
The extent to which pain interfered with normal work ranged from 27% who reported it interfered a little, to 7% who reported it interfered extremely (see Graph 2).
Table 2 provides percentages for participants reporting physical functioning limitations, and Table 3 provides data regarding work difficulties for the sample.
Demographic Variables and Pain Reports
Two-way contingency table analyses were conducted to evaluate whether there were differences between pain occurrence and the levels of categories within each demographic variable listed in Table 4. No significant results were found in these analyses. Because two cells (pain non-occurrence for both groups) contained values less than five, Chi Square analyses could not be conducted for age groups or for injury level (quadriplegia and paraplegia). Similarly, two cells (pain non-occurrence for both groups) contained values less than five, and therefore Chi Square analyses could not be conducted for injury status (complete or incomplete). Because high percentages of all demographic variables reported having pain occurrence at some point during their study enrollment, cell sizes for all of these analyses were too small. Descriptive statistics for the percentage of people within each demographic category is listed in Table 4. Because pain reports were high for the sample, there are only slight differences between groups for reported pain percentages.
Table 4
Conclusions
Results of these analyses provide evidence that pain is associated with decreased function, although causality cannot be determined from these data. The descriptive statistics presented in this paper allow examination of pain as associated with certain limitations, however many other factors may also be contributing to these functional difficulties such as level of injury and associated motor and sensory deficits. Understanding the relationship of pain to function and activity participation for people with SCI is vital to establishing effective pain prevention and self-management programs for this population. Future research should examine the impact of physical pain characteristics such as location, type, and severity on functional outcomes and quality of life measures for people with disabilities.
Acknowledgements
This project was funded by grant No. H133B980016 from the National Institute for Disability and Rehabilitation Research in collaboration with Spain Rehabilitation at the University of Alabama––Birmingham.
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Jennifer L. Rowland, PhD, PT, MPH is a research assistant professor in the Department of Disability and Human Development and project director of the Center on Health Promotion Research for People with Disabilities at the University of Illinois at Chicago, Illinois.
Glen W. White, PhD, is director of Research & Training Center on Independent Living at the University of Kansas, Lawrence, Kansas.