Abstract

IntroductionTraumatic spinal cord injury (SCI) triggers complex changes that can negatively impact health and quality of life. The International SCI Data Sets were developed to enable more comparable data collection on the complex sequelae of SCI across studies. This should facilitate progress in mechanistic understanding and improving treatments of SCI.Study designProspective observational pilot study.ObjectivesTo collect data on pain symptoms and quality of life (QoL) in adults living with chronic SCI.SettingAcademic medical center, New York, USA.MethodsThe International SCI Basic Pain and Qol Data Sets were used to collect data from participants with chronic SCI (N = 31) at 2 study visits held 6 months apart. The QoL Data Set was also used to collect data from able-bodied persons of similar age and gender distribution (N = 28).ResultsMost participants with SCI had multiple types and locations of pain problems at both study visits, despite reported being treated for pain. At both visits, the worst pain problem type was nociceptive, followed by neuropathic, which was typically rated of higher intensity. QoL scores were significantly lower across all domains of the data set in persons with SCI than able-bodied persons. Persons with pain tended to have lower QoL scores, although this trend was not significant.ConclusionsThis study demonstrates the presence, complexity and stability of pain symptoms refractory to treatment and lower quality of life ratings in persons with chronic SCI.SponsorshipGrants from the Craig H. Neilsen Foundation, New York Empire Clinical Research Program, New York State Spinal Cord Injury Research Board.

Highlights

  • Traumatic spinal cord injury (SCI) triggers complex changes that can negatively impact health and quality of life

  • Pain interferes with quality of life (QoL); in the Model Systems database, at 1 year after injury, interference of pain with work was: “not at all” for 18%, “a little bit” for 21%, “moderately” for 14%, “quite a bit” for 12.8%, and “extremely” for 6.4% of respondents [3]

  • This study shows that QoL was significantly lower across all domains of the International SCI QoL Basic Data Set

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Summary

Introduction

Traumatic spinal cord injury (SCI) triggers complex changes that can negatively impact health and quality of life. The International SCI Data Sets were developed to enable more comparable data collection on the complex sequelae of SCI across studies. This should facilitate progress in mechanistic understanding and improving treatments of SCI. In data from the NIH SCI Model Systems database, on a scale of 0–10, where 0 is none and 10 is the worst pain, the mean score for pain severity after injury was 4.2 at year 1, 4.5 at year 10, 4.3 at year 20, and 4.2 at year 40 [3].

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