Lightning Presentation Sydney Spinal Symposium 2026

Development and acceptability of a patient decision aid for people with degenerative cervical myelopathy: an international mixed-methods study (#140)

Andrew R Gamble 1 2 3 , David B. Anderson 1 3 , Marnee J. McKay 1 3 , Benjamin Davies 4 , James Van Gelder 5 6 , Tammy C Hoffmann 7 , Kirsten McCaffery 8 , Samuel X Stevens 9 10 , Carlo Ammendolia 11 , Rohil Chauhan 12 , Carl Zisper 13 , Timonthy F Boerger 14 , Lindsay A Tetreault 15 , Michael G Fehlings 16 , Elanor Dustan 17 , Carolyn Nugent 18 , Helen Holmgren 18 , Andreas K Demetriades 19 , Justin M Lantz 20 , Rana Dhillon 21 22 , Christopher G Maher 2 3 , Joshua R Zadro 2 3
  1. School of Health Sciences, Faculty of Medicine and Health, The University of Sydney, Sydney, NSW, Australia
  2. The Institute for Musculoskeletal Health, The University of Sydney, Sydney, NSW, Australia
  3. The University of Sydney, Sydney, NSW, Australia
  4. Discipline of Neurosurgery, Cambridge University Hospital, University of Cambridge, England, United Kingdom
  5. Discipline of Neurosurgery, Concord Repatriation General Hospital, Sydney, NSW, Australia
  6. Medicine and Health, University of New South Wales, Sydney, New South Wales, Australia
  7. Institute for Evidence-Based Healthcare, Faculty of Health Sciences and Medicine, Bond University, Gold Coast, Queensland, Australia
  8. Sydney Health Literacy Lab, School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, NSW, Australia
  9. School of Medicine, Faculty of Medicine and Health, The University of Sydney, Sydney, NSW, Australia
  10. Department of Medical Oncology, Queen's University, Kingston, Ontario, Canada
  11. Department of Surgery, Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada
  12. Active Living and Rehabilitation, Aotearoa New Zealand, Health and Rehabilitation Research Institute, Faculty of Health and Environmental Sciences, Auckland University of Technology, Auckland, New Zealand
  13. Spinal Cord Injury Center, Balgrist University Hospital Zurich, University of Zurich, Zurich, Switzerland
  14. Joint Department of Biomedical Engineering, Marquette University and The Medical College of Wisconsin, Wisconsin, WI, USA
  15. Division of Neurosurgery and Spine Program, Department of Surgery, University of Toronto, Toronto, Ontario, Canada
  16. Division of Neurosurgery and Spine Program, University of Toronto and Krembil Neuroscience Centre, Toronto Western Hospital, University Health Netowrk, Toronto, Ontario, Canada
  17. Nottingham University Hospitals, NHS Trust, Nottingham, England
  18. Myelopathy.org, University of Cambridge, Cambridge, England, United Kingdom
  19. Edinburgh Spinal Surgery Outcome Studies Group, Department of Neurosurgery, Royal Infurmary Edinburgh, Edinburgh, Scottland, United Kingdom
  20. Division of Biokinesiology and Physical Therapy, University of Southern California, Los Angeles, CA, USA
  21. Department of Surgery, University of Melbourne, Melbourne, Victoria, Australia
  22. Department of Neurosurgery, St Vincent's Hospital Melbourne, Melbourne, Victoria, Australia

Objectives: To develop and user-test a patient decision aid for people diagnosed with degenerative cervical myelopathy and who are considering surgery.

Design: Mixed-methods study describing the development of a patient decision aid.

Setting: A draft decision aid was developed by a multidisciplinary steering group (including study authors with degenerative cervical myelopathy, health professionals and researchers) informed by the best available evidence, authorship consensus, and existing patient decision aids.

Participants: Patient-participants and health professional-participants who manage people with degenerative cervical myelopathy were recruited through social media and the steering group’s research and practice network. Quantitative questionnaires were used to gather baseline data, descriptive feedback, refine the decision aid, and assess its acceptability. Qualitative semi-structured interviews were conducted online to gather feedback on the decision aid and were analysed using reflexive thematic analysis.

Results: We conducted 32 interviews; 19 patient-participants and 13 health professional-participants who manage people with degenerative cervical myelopathy (neurosurgeons, neurologists, physiotherapists, orthopaedic surgeon, general practitioner, rehabilitation and pain specialist and consultant occupational physician and chiropractor/researcher). Participants were from 10 countries (Australia, Canada, Cyprus, Germany, Ireland, New Zealand, Sweden, Switzerland, United Kingdom and USA). Most participants rated the decision aid’s acceptability as good-to-excellent and agreed with most aspects of the decision aid (e.g., defining degenerative cervical myelopathy, management recommendations, potential benefits and harms, questions to consider asking a health professional).

Conclusion: Our patient decision aid was rated as an acceptable tool by both health professional-participants who treat degenerative cervical myelopathy and patient-participants with lived experience of degenerative cervical myelopathy. This decision aid can be used by clinicians and people with DCM to help with shared decision making following a diagnosis of degenerative cervical myelopathy. A study testing the potential benefits of this decision aid in a clinical setting is recommended.