gms | German Medical Science

68th Annual Meeting of the German Society of Neurosurgery (DGNC)
7th Joint Meeting with the British Neurosurgical Society (SBNS)

German Society of Neurosurgery (DGNC)

14 - 17 May 2017, Magdeburg

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Common data elements in degenerative cervical myelopathy (CODE-DCM): Identifying the patient and carer perspective

Meeting Abstract

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  • Colin Munro - University of Cambridge, School of Clinical Medicine, Cambridge, United Kingdom
  • Fahana Akter - University of Cambridge, Welcome Trust and Medical Research Council Stem Cell Institute, Anne Maclaren Laboratory, Cambridge, United Kingdom
  • Peter Hutchinson - University of Cambridge, Department of Clinical Neurosciences, Academic Neurosurgery Unit, Cambridge, United Kingdom
  • Benjamin Davies - University of Cambridge, Department of Clinical Neurosciences, Academic Neurosurgery Unit, Cambridge, United Kingdom
  • Mark Kotter - University of Cambridge, Department of Clinical Neurosciences, Academic Neurosurgery Unit, Cambridge, United Kingdom

Deutsche Gesellschaft für Neurochirurgie. Society of British Neurological Surgeons. 68. Jahrestagung der Deutschen Gesellschaft für Neurochirurgie (DGNC), 7. Joint Meeting mit der Society of British Neurological Surgeons (SBNS). Magdeburg, 14.-17.05.2017. Düsseldorf: German Medical Science GMS Publishing House; 2017. DocMO.15.05

doi: 10.3205/17dgnc088, urn:nbn:de:0183-17dgnc0883

Published: June 9, 2017

© 2017 Munro et al.
This is an Open Access article distributed under the terms of the Creative Commons Attribution 4.0 License. See license information at http://creativecommons.org/licenses/by/4.0/.

Outline

Text

Objective: Effective inter-study comparison of treatment studies for Degenerative Cervical Myelopathy (DCM) is limited by variable outcome reporting [1]. CODE-DCM is a consensus process aiming to standardise this. This sub-project aimed to identify the outcomes from a patient and carer perspective.

Methods: Using the Delphi process, DCM patients (N=5) and their carers (N=4) were interviewed about the impact of the condition on patients. Results from the systematic reviews [1] and patient research priorities [2] were disseminated, and further discussion recorded. The groups were merged, results shared and categorised by mutual agreement.

Results: 41 effects were reported by patients and 11 by carers. These were categorised into: arm/leg function (P 22; C 27), immobility (P 20; C 0), pain (P 17; C 9), psychosocial (P 12; C 18), sleep (P 10; C 9), genitourinary issues (P 7; C 18), sensation (P 5; C 0), symptom variability (P 5; C 18), and breathing (P 2; C 0). (P x; C y: % of effects reported by patients and carers in each domain).

Conclusion: DCM affects both patients and their carers in a variety of ways. Symptom variability, breathing and sleep are not currently measured in DCM treatment studies. This now needs to be validated in a larger cohort.

Outline

References

1.
Davies BM, McHugh M, Elgheriani A, Kolias AG, Tetreault LA, Hutchinson PJ, Fehlings MG, Kotter MR. Reported Outcome Measures in Degenerative Cervical Myelopathy: A Systematic Review. PLoS One. 2016 Aug 2;11(8):e0157263. DOI: 10.1371/journal.pone.0157263 External link
2.
Davies BM, et al. What are the research priorities in degenerative cervical myelopathy? In: SBNS Autumn Meeting 2016