The International Spinal Cord Injury Pain Basic Data Set (version 3.0)

Overview

Journal Spinal Cord

Specialty Neurology

Date 2023 Jul 26

PMID 37491608

Authors

Eva Widerstrom-Noga

Fin Biering-Sorensen

Thomas N Bryce

Diana D Cardenas

Nanna B Finnerup

Mark P Jensen

J Scott Richards

Jan Rosner

Julian Taylor

Affiliations

Soon will be listed here.

Abstract

Study Design: Expert opinion, feedback, revisions, and final consensus.

Objectives: To update the International Spinal Cord Injury Pain Basic Data Set (ISCIPBDS version 2.0) and incorporate suggestions from the SCI pain clinical and research community with respect to overall utility.

Setting: International.

Methods: The ISCIPBDS working group evaluated these suggestions and made modifications. The revised ISCIPBDS (Version 3.0) was then reviewed by members of the International SCI Data Sets Committee, the American Spinal Injury Association (ASIA) Board, the International Spinal Cord Society (ISCoS) Executive and Scientific Committees, individual reviewers and societies, and posted on the ASIA and ISCoS websites for 1 month to elicit comments before final approval by ASIA and ISCoS.

Results: The ISCIPBDS (Version 3.0) was updated to make the dataset more flexible and useful: 1. The assessment can be based on the patient's perception of several of his/her "worst" pain(s) or based on the International SCI Pain (ISCIP) Classification-defined or other pain types, depending on the specific research questions or clinical needs. 2. Pain interference should usually be rated for overall pain but may also be used for specific pain problems if needed. 3. An optional pain drawing was added to complement the check box documentation of pain location. 4. Data categories consistent with the Extended Pain Dataset list of current treatments were added. 5. Several new training cases were added.

Citing Articles

Exoskeleton Training for Spinal Cord Injury Neuropathic Pain (ExSCIP): Protocol for a Phase 2 Feasibility Randomised Trial.

White C, Doherty O, Smith E, Blake C, Finnerup N, Kirwan N HRB Open Res. 2025; 7():55.

PMID: 39840276 PMC: 11748425. DOI: 10.12688/hrbopenres.13949.1.

Tonic Cold Pain Temporal Summation and Translesional Cold Pressor Test-Induced Pronociception in Spinal Cord Injury: Association with Spontaneous and Below-Level Neuropathic Pain.

Rios-Leon M, Demertzis E, Palazon-Garcia R, Taylor J Healthcare (Basel). 2024; 12(22).

PMID: 39595497 PMC: 11593809. DOI: 10.3390/healthcare12222300.

Botulinum toxin: Should we reconsider its place in the treatment of neuropathic pain?.

Bhalla P Br J Pain. 2024; 18(5):386-387.

PMID: 39372101 PMC: 11451518. DOI: 10.1177/20494637241282323.

References

Widerstrom-Noga E, Biering-Sorensen F, Bryce T, Cardenas D, Finnerup N, Jensen M . The international spinal cord injury pain basic data set. Spinal Cord. 2008; 46(12):818-23. DOI: 10.1038/sc.2008.64. View

Widerstrom-Noga E, Biering-Sorensen F, Bryce T, Cardenas D, Finnerup N, Jensen M . The International Spinal Cord Injury Pain Basic Data Set (version 2.0). Spinal Cord. 2014; 52(4):282-6. DOI: 10.1038/sc.2014.4. View

Azadmanjir Z, Jazayeri S, Arejan R, Ghodsi Z, Sharif-Alhoseini M, Kheiri G . The data set development for the National Spinal Cord Injury Registry of Iran (NSCIR-IR): progress toward improving the quality of care. Spinal Cord Ser Cases. 2020; 6(1):17. PMC: 7093542. DOI: 10.1038/s41394-020-0265-x. View

Nachtegaal J, van Langeveld S, Slootman H, Post M . Implementation of a Standardized Dataset for Collecting Information on Patients With Spinal Cord Injury. Top Spinal Cord Inj Rehabil. 2018; 24(2):133-140. PMC: 5915104. DOI: 10.1310/sci2402-133. View

Biering-Sorensen F, Alai S, Anderson K, Charlifue S, Chen Y, DeVivo M . Common data elements for spinal cord injury clinical research: a National Institute for Neurological Disorders and Stroke project. Spinal Cord. 2015; 53(4):265-77. PMC: 4393777. DOI: 10.1038/sc.2014.246. View

Bryce T, Biering-Sorensen F, Finnerup N, Cardenas D, Defrin R, Lundeberg T . International spinal cord injury pain classification: part I. Background and description. March 6-7, 2009. Spinal Cord. 2011; 50(6):413-7. DOI: 10.1038/sc.2011.156. View

Lutolf R, Rosner J, Curt A, Hubli M . Indicators of central sensitization in chronic neuropathic pain after spinal cord injury. Eur J Pain. 2022; 26(10):2162-2175. PMC: 9826442. DOI: 10.1002/ejp.2028. View

Gibbs K, Beaufort A, Stein A, Leung T, Sison C, Bloom O . Assessment of pain symptoms and quality of life using the International Spinal Cord Injury Data Sets in persons with chronic spinal cord injury. Spinal Cord Ser Cases. 2019; 5:32. PMC: 6474307. DOI: 10.1038/s41394-019-0178-8. View

Scheuren P, Gagne M, Jutzeler C, Rosner J, Mercier C, Kramer J . Tracking Changes in Neuropathic Pain After Acute Spinal Cord Injury. Front Neurol. 2019; 10:90. PMC: 6382744. DOI: 10.3389/fneur.2019.00090. View

10.

Gagne M, Cote I, Boulet M, Jutzeler C, Kramer J, Mercier C . Conditioned Pain Modulation Decreases Over Time in Patients With Neuropathic Pain Following a Spinal Cord Injury. Neurorehabil Neural Repair. 2020; 34(11):997-1008. PMC: 7650001. DOI: 10.1177/1545968320962497. View

11.

Burke D, Fullen B, Lennon O . Pain profiles in a community dwelling population following spinal cord injury: a national survey. J Spinal Cord Med. 2017; 42(2):201-211. PMC: 6419620. DOI: 10.1080/10790268.2017.1351051. View

12.

Tsai C, Bryce T, Delgado A, Mulroy S, Maclntyre B, Charlifue S . Treatments that are perceived to be helpful for non-neuropathic pain after traumatic spinal cord injury: a multicenter cross-sectional survey. Spinal Cord. 2021; 59(5):520-528. DOI: 10.1038/s41393-021-00621-9. View

13.

Felix E, Cardenas D, Bryce T, Charlifue S, Lee T, MacIntyre B . Prevalence and Impact of Neuropathic and Nonneuropathic Pain in Chronic Spinal Cord Injury. Arch Phys Med Rehabil. 2021; 103(4):729-737. DOI: 10.1016/j.apmr.2021.06.022. View

14.

Anderson K, Guest J, Dietrich W, Bunge M, Curiel R, Dididze M . Safety of Autologous Human Schwann Cell Transplantation in Subacute Thoracic Spinal Cord Injury. J Neurotrauma. 2017; 34(21):2950-2963. DOI: 10.1089/neu.2016.4895. View

15.

Biering-Sorensen F, Charlifue S, DeVivo M, Noonan V, Post M, Stripling T . International Spinal Cord Injury Data Sets. Spinal Cord. 2006; 44(9):530-4. DOI: 10.1038/sj.sc.3101930. View

16.

Widerstrom-Noga E, Biering-Sorensen F, Bryce T, Cardenas D, Finnerup N, Jensen M . The International Spinal Cord Injury Pain Extended Data Set (Version 1.0). Spinal Cord. 2016; 54(11):1036-1046. DOI: 10.1038/sc.2016.51. View

17.

Rosner J, Lutolf R, Hostettler P, Villiger M, Clijsen R, Hohenauer E . Assessment of neuropathic pain after spinal cord injury using quantitative pain drawings. Spinal Cord. 2021; 59(5):529-537. PMC: 8110478. DOI: 10.1038/s41393-021-00616-6. View

18.

Rupp R, Biering-Sorensen F, Burns S, Graves D, Guest J, Jones L . International Standards for Neurological Classification of Spinal Cord Injury: Revised 2019. Top Spinal Cord Inj Rehabil. 2021; 27(2):1-22. PMC: 8152171. DOI: 10.46292/sci2702-1. View