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We Choose to Call It ‘Degenerative Cervical Myelopathy’: Findings of Ao Spine Recode-Dcm, an International and Multi-Stakeholder Partnership to Agree a Standard Unifying Term and Definition for a Disease Publisher



Davies BM1, 2 ; Khan DZ3, 4 ; Barzangi K1 ; Ali A3 ; Mowforth OD1, 2 ; Nouri A5 ; Harrop JS6 ; Aarabi B7 ; Rahimimovaghar V8 ; Kurpad SN9 ; Guest JD10 ; Tetreault L11 ; Kwon BK12 ; Boerger TF9 Show All Authors
Authors
  1. Davies BM1, 2
  2. Khan DZ3, 4
  3. Barzangi K1
  4. Ali A3
  5. Mowforth OD1, 2
  6. Nouri A5
  7. Harrop JS6
  8. Aarabi B7
  9. Rahimimovaghar V8
  10. Kurpad SN9
  11. Guest JD10
  12. Tetreault L11
  13. Kwon BK12
  14. Boerger TF9
  15. Rodriguespinto R13, 14
  16. Furlan JC15
  17. Chen R16
  18. Zipser CM17
  19. Curt A17
  20. Milligan J18
  21. Kalsirayn S19
  22. Sarewitz E2
  23. Sadler I2
  24. Widdop S2
  25. Fehlings MG20
  26. Kotter MRN1, 2
Show Affiliations
Authors Affiliations
  1. 1. Academic Neurosurgery Unit, Department of Clinical Neurosurgery, University of Cambridge, United Kingdom
  2. 2. Myelopathy.org, United Kingdom
  3. 3. Department of Neurosurgery, Walton Centre, United Kingdom
  4. 4. Wellcome / EPSRC Centre for Interventional and Surgical Sciences, University College London, United Kingdom
  5. 5. Department of Neurosurgery, Geneva University Hospital, University of Geneva, Switzerland
  6. 6. Department of Neurological Surgery, Thomas Jefferson University, Philadelphia, PA, United States
  7. 7. Department of Neurosurgery, University of Maryland School of Medicine, Baltimore, MD, United States
  8. 8. Department of Neurosurgery, Sina Trauma and Surgery Research Center, Tehran University of Medical Sciences, Iran
  9. 9. Department of Neurosurgery, Medical College of Wisconsin, Wauwatosa, WI, United States
  10. 10. Department of Neurosurgery and The Miami Project to Cure Paralysis, The Miller School of Medicine, University of Miami, Miami, FL, United States
  11. 11. Department of Neurology, New York University Langone Health, New York, NY, United States
  12. 12. Department of Orthopaedics, Faculty of Medicine, University of British Columbia, Vancouver, BC, Canada
  13. 13. Spinal Unit (UVM), Department of Orthopaedics, Centro Hospitalar Universitario do Porto - Hospital de Santo Antonio, Portugal
  14. 14. Instituto de Ciencias Biomedicas Abel Salazar, Portugal
  15. 15. Department of Medicine, Division of Physical Medicine and Rehabilitation, University of Toronto, Toronto, ON, Canada
  16. 16. Division of Neurology, University of Toronto, Toronto, ON, Canada
  17. 17. University Spine Center, Balgrist University Hospital, Switzerland
  18. 18. Centre for Family Medicine, Toronto, ON, Canada
  19. 19. KITE Research Institute, University Health Network, Toronto, ON, Canada
  20. 20. Division of Neurosurgery, Department of Surgery, University of Toronto, Toronto, ON, Canada

Source: Global Spine Journal Published:2024


Abstract

Study Design: Modified DELPHI Consensus Process Objective: To agree a single unifying term and definition. Globally, cervical myelopathy caused by degenerative changes to the spine is known by over 11 different names. This inconsistency contributes to many clinical and research challenges, including a lack of awareness. Method: AO Spine RECODE-DCM (Research objectives and Common Data Elements Degenerative Cervical Myelopathy). To determine the index term, a longlist of candidate terms and their rationale, was created using a literature review and interviews. This was shared with the community, to select their preferred terms (248 members (58%) including 149 (60%) surgeons, 45 (18%) other healthcare professionals and 54 (22%) People with DCM or their supporters) and finalized using a consensus meeting. To determine a definition, a medical definition framework was created using inductive thematic analysis of selected International Classification of Disease definitions. Separately, stakeholders submitted their suggested definition which also underwent inductive thematic analysis (317 members (76%), 190 (59%) surgeons, 62 (20%) other healthcare professionals and 72 (23%) persons living with DCM or their supporters). Using this definition framework, a working definition was created based on submitted content, and finalized using consensus meetings. Results: Degenerative Cervical Myelopathy was selected as the unifying term, defined in short, as a progressive spinal cord injury caused by narrowing of the cervical spinal canal Conclusion: A consistent term and definition can support education and research initiatives. This was selected using a structured and iterative methodology, which may serve as an exemplar for others in the future. © The Author(s) 2022.
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