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

Benjamin M Davies; Danyal Z Khan; Kara Barzangi; Ahmad Ali; Oliver D Mowforth; Aria Nouri; James S Harrop; Bizhan Aarabi; Vafa Rahimi-Movaghar; Shekar N Kurpad; James D Guest; Lindsay Tetreault; Brian K Kwon; Timothy F Boerger; Ricardo Rodrigues-Pinto; Julio C Furlan; Robert Chen; Carl Moritz Zipser; Armin Curt; James Milligan; Sukhivinder Kalsi-Rayn; Ellen Sarewitz; Iwan Sadler; Shirley Widdop; Michael G Fehlings; Mark R N Kotter

doi:10.1177/21925682221111780

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

Global Spine J. 2024 Mar;14(2):503-512. doi: 10.1177/21925682221111780. Epub 2022 Jun 29.

Authors

Benjamin M Davies^{1

2}, Danyal Z Khan^{3

4}, Kara Barzangi¹, Ahmad Ali³, Oliver D Mowforth^{1

2}, Aria Nouri⁵, James S Harrop⁶, Bizhan Aarabi⁷, Vafa Rahimi-Movaghar⁸, Shekar N Kurpad⁹, James D Guest¹⁰, Lindsay Tetreault¹¹, Brian K Kwon¹², Timothy F Boerger⁹, Ricardo Rodrigues-Pinto^{13

14}, Julio C Furlan¹⁵, Robert Chen¹⁶, Carl Moritz Zipser¹⁷, Armin Curt¹⁷, James Milligan¹⁸, Sukhivinder Kalsi-Rayn¹⁹, Ellen Sarewitz², Iwan Sadler², Shirley Widdop², Michael G Fehlings²⁰, Mark R N Kotter^{1

2}

Affiliations

¹ Academic Neurosurgery Unit, Department of Clinical Neurosurgery, University of Cambridge, UK.
² Myelopathy.org, UK.
³ Department of Neurosurgery, Walton Centre, UK.
⁴ Wellcome / EPSRC Centre for Interventional and Surgical Sciences, University College London, UK.
⁵ Department of Neurosurgery, Geneva University Hospital, University of Geneva, Switzerland.
⁶ Department of Neurological Surgery, Thomas Jefferson University, Philadelphia, PA, USA.
⁷ Department of Neurosurgery, University of Maryland School of Medicine, Baltimore, MD, USA.
⁸ Department of Neurosurgery, Sina Trauma and Surgery Research Center, Tehran University of Medical Sciences, Iran.
⁹ Department of Neurosurgery, Medical College of Wisconsin, Wauwatosa, WI, USA.
¹⁰ Department of Neurosurgery and The Miami Project to Cure Paralysis, The Miller School of Medicine, University of Miami, Miami, FL, USA.
¹¹ Department of Neurology, New York University Langone Health, New York, NY, USA.
¹² Department of Orthopaedics, Faculty of Medicine, University of British Columbia, Vancouver, BC, Canada.
¹³ Spinal Unit (UVM), Department of Orthopaedics, Centro Hospitalar Universitário do Porto - Hospital de Santo António, Portugal.
¹⁴ Instituto de Ciências Biomédicas Abel Salazar, Portugal.
¹⁵ Department of Medicine, Division of Physical Medicine and Rehabilitation, University of Toronto, Toronto, ON, Canada.
¹⁶ Division of Neurology, University of Toronto, Toronto, ON, Canada.
¹⁷ University Spine Center, Balgrist University Hospital, Switzerland.
¹⁸ Centre for Family Medicine, Toronto, ON, Canada.
¹⁹ KITE Research Institute, University Health Network, Toronto, ON, Canada.
²⁰ Division of Neurosurgery, Department of Surgery, University of Toronto, Toronto, ON, Canada.

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.

Keywords: Cervical; Disc Herniation; Myelopathy; Ossification Posterior Longitudinal Ligament; Spondylosis; Spondylotic; Stenosis; consensus; degeneration; health informatics; index term.