International Spinal Cord Injury Pain (ISCIP) Classification: Part 2. Initial validation using vignettes.

STUDY DESIGN: International validation study using self-administered surveys. OBJECTIVES: To investigate the utility and reliability of the International Spinal Cord Injury Pain (ISCIP) Classification as used by clinicians. METHODS: Seventy-five clinical vignettes (case histories) were prepared by the members of the ISCIP Classification group and assigned to a category by consensus. Vignettes were incorporated into an Internet survey distributed to clinicians. Clinicians were asked, for each vignette, to decide on the number of pain components present and to classify each using the ISCIP Classification. RESULTS: The average respondent had 86% of the questions on the number of pain components correct. The overall correctness in determining whether pain was nociceptive was 79%, whereas the correctness in determining whether pain was neuropathic was 77%. Correctness in determining if pain was musculoskeletal was 84%, whereas for visceral pain, neuropathic at-level spinal cord injury (SCI) and below-level SCI pain it was 85%, 57% and 73%, respectively. Using strict criteria, the overall correctness in determining pain type was 68% (versus an expected 95%), but with maximally relaxed criteria, it increased to 85%. CONCLUSIONS: The reliability of use of the ISCIP Classification by clinicians (who received minimal training in its use) using a clinical vignette approach is moderate. Some subtypes of pain proved challenging to classify. The ISCIP should be tested for reliability by applying it to real persons with pain after SCI. Based on the results of this validation process, the instructions accompanying the ISCIP Classification for classifying subtypes of pain have been clarified.

International spinal cord injury pain classification: part I. Background and description. March 6-7, 2009.

STUDY DESIGN: Discussion of issues and development of consensus. OBJECTIVE: Present the background, purpose, development process, format and definitions of the International Spinal Cord Injury Pain (ISCIP) Classification. METHODS: An international group of spinal cord injury (SCI) and pain experts deliberated over 2 days, and then via e-mail communication developed a consensus classification of pain after SCI. The classification was reviewed by members of several professional organizations and their feedback was incorporated. The classification then underwent validation by an international group of clinicians with minimal exposure to the classification, using case study vignettes. Based upon the results of this study, further revisions were made to the ISCIP Classification. RESULTS: An overall structure and terminology has been developed and partially validated as a merger of and improvement on previously published SCI pain classifications, combined with basic definitions proposed by the International Association for the Study of Pain and pain characteristics described in published empiric studies of pain. The classification is designed to be comprehensive and to include pains that are directly related to the SCI pathology as well as pains that are common after SCI but are not necessarily mechanistically related to the SCI itself. CONCLUSIONS: The format and definitions presented should help experienced and non-experienced clinicians as well as clinical researchers classify pain after SCI.

Recommendations for translation and reliability testing of International Spinal Cord Injury Data Sets.

OBJECTIVE: To provide recommendations regarding translation and reliability testing of International Spinal Cord Injury (SCI) Data Sets. SETTING: The Executive Committee for the International SCI Standards and Data Sets. RECOMMENDATIONS: Translations of any specific International SCI Data Set can be accomplished by translation from the English version into the target language, and be followed by a back-translation into English, to confirm that the original meaning has been preserved. Another approach is to have the initial translation performed by translators who have knowledge of SCI, and afterwards controlled by other person(s) with the same kind of knowledge. The translation process includes both language translation and cultural adaptation, and therefore shall not be made word for word, but will strive to include conceptual equivalence. At a minimum, the inter-rater reliability should be tested by no less than two independent observers, and preferably in multiple countries. Translations must include information on the name, role and background of everyone involved in the translation process, and shall be dated and noted with a version number. CONCLUSION: By following the proposed guidelines, translated data sets should assure comparability of data acquisition across countries and cultures. If the translation process identifies irregularities or misrepresentation in either the original English version or the target language, the working group for the particular International SCI Data Set shall revise the data set accordingly, which may include re-wording of the original English version in order to accomplish a compromise in the content of the data set.

International Spinal Cord Injury Core Data Set.

STUDY DESIGN: Survey of expert opinion, feedback, and development of final consensus. OBJECTIVE: Present the background, purpose, development process, and results for the International Spinal Cord Injury (SCI) Core Data Set. SETTING: International. METHODS: A committee of experts was established to select and define data elements to be included in an International SCI Core Data Set. A draft core data set was developed and disseminated to appropriate organisations for comment. All suggested revisions were considered, and a final version of the core data set was disseminated again for approval and adoption. RESULTS: The core data set consists of 24 variables, including basic demographic characteristics, dates of admission and discharge from initial acute and rehabilitation care, cause of injury, place of discharge, presence of vertebral fractures and associated injuries, occurrence of spinal surgery, and measures of neurological and ventilator status. CONCLUSION: Collection of the core data set should be a basic ingredient of all future studies of SCI to facilitate accurate description of patient populations and comparison of results across published studies from around the world.

International Spinal Cord Injury Data Sets.

STUDY DESIGN: Discussion and development of final consensus. OBJECTIVE: Present the background, purpose, and process for the International Spinal Cord Injury (SCI) Data Sets development. SETTING: International. METHODS: An international meeting on SCI data collection and analysis occurred at a workshop on May 2, 2002, before the combined meeting of the American Spinal Injury Association (ASIA) and the International Spinal Cord Society (ISCoS) in Vancouver, British Columbia, Canada. At this meeting, a process was developed for selection of data elements to be included in International SCI Data Sets. RESULTS: An overall structure and terminology has been developed following the format of the International Classification of Functioning, Disability and Health (ICF). This includes definitions of the Core Data Set, as well as Modules with Basic Questions or Data Sets and Expanded Data Sets. The Core Data Set has been developed and will be presented separately. Working groups for additional modules are being established as well as general guidelines for the development of the modules. CONCLUSION: The presented format should help in developing data sets and modules within various topics related to SCI.

New estimates of the direct costs of traumatic spinal cord injuries: results of a nationwide survey.

New estimates of the direct costs of traumatic spinal cord injuries (SCI) are obtained from a comprehensive survey of the US SCI population. These direct costs, defined as the value (in 1988 dollars) of resources used specifically to treat or to adapt to the SCI condition, represent the average experience of the US SCI population. Responses to a detailed questionnaire administered to a sample of traumatic SCI persons in the United States provide the primary source of data for this study. Analysis of this survey data indicates that more recently injured SCI persons (ie those injured since 1970) spent an average of 171 days in a hospital over the first 2 years post injury. Initial hospital expenses will average $95,203. Home modification costs in excess of $8,000 can also be expected. After recovery and rehabilitation, a SCI person will pay, on average, $2,958 per year in hospital expenses and $4,908 per year for other medical services, supplies and adaptive equipment. Personal assistance costs and costs of institutional care will average $6,269 per year. These cost estimates represent the incremental costs of SCI, ie they exclude any costs that would have been incurred in the absence of SCI.

New estimates of traumatic SCI prevalence: a survey-based approach.

New estimates of traumatic spinal cord injury (SCI) prevalence are developed from a survey specifically designed to identify the SCI population in both institutional and non-institutional settings. The survey utilised a mixed-mode sampling design based on probability sampling methods. Detailed interviews were conducted with SCI persons identified in this survey. We estimate that the traumatic SCI prevalence rate in the United States is 721 cases per million, and that there are about 177,000 SCI persons residing in the United States.

A demographic study of spinal cord injured veterans.

These demographic characteristics are not absolute. They do, however, represent general trends for those SCI veterans identified by the PTF as utilizing the VAMCs. The typical SCI veteran described from this limited data base would be over 50 years old but possibly under age 65; the veteran would be a Caucasian male who served in World War II; currently he resides in a state with a large SCI center likely in the "sun belt" region of the country; and, this veteran is a nonservice connected paraplegic due to traumatic circumstances.