Perspectives of people with spinal cord injury on a pain education resource.

Introduction: Spinal cord injury (SCI) often leads to neuropathic pain that negatively affects quality of life. Several qualitative research studies in individuals with SCI who experience neuropathic pain indicate the lack of adequate information about pain. We previously developed an educational resource, the SeePain, based on scientific literature and a series of qualitative interviews of people with SCI, their significant others/family members, and SCI healthcare providers. Methods: However, to quantitatively evaluate the utility of this educational resource in a larger sample, we examined the agreement and usefulness ratings of statements regarding clarity/comprehensibility, content, and format of the SeePain, derived from the thematic analysis of our previous qualitative interviews. Participants completed a survey that provided a digital version of the SeePain and then rated their agreement/usefulness with the statements using numerical rating scales. Results: There were overall high perceived agreement and usefulness ratings regarding the SeePain's clarity, content, and format. A factor analysis reduced the agreement and usefulness ratings into 4 components (content, clarity, format, and delivery medium). Group comparisons showed that individuals with higher education were more likely to endorse electronic and website formats, and the usefulness of a shorter version of the SeePain; females and younger individuals showed greater endorsement for clarity. Finally, higher pain intensity ratings were associated with greater agreement and usefulness of the content of the SeePain. Discussion: Overall, these results support the utility of the SeePain as a source of information regarding pain that may facilitate communication about pain and its management following SCI.

Development of a pain education resource for people with spinal cord injury.

Many people with spinal cord injury (SCI) develop chronic pain, including neuropathic pain. Unfortunately, current treatments for this condition are often inadequate because SCI-associated neuropathic pain is complex and depends on various underlying mechanisms and contributing factors. Multimodal treatment strategies including but not limited to pharmacological treatments, physical rehabilitation, cognitive training, and pain education may be best suited to manage pain in this population. In this study, we developed an educational resource named the SeePain based on published pain literature, and direct stakeholder input, including people living with SCI and chronic pain, their significant others, and healthcare providers with expertise in SCI. The SeePain was then 1) systematically evaluated by stakeholders regarding its content, comprehensibility, and format using qualitative interviews and thematic analysis, and 2) modified based on their perspectives. The final resource is a comprehensive guide for people with SCI and their significant others or family members that is intended to increase health literacy and facilitate communication between SCI consumers and their healthcare providers. Future work will quantitatively validate the SeePain in a large SCI sample.