Prevailing Outcome Themes Reported by People With Degenerative Cervical Myelopathy: Focus Group Study

Danyal Zaman Khan, Siobhan Mairead Fitzpatrick, Bryn Hilton, Angus Gk McNair, Ellen Sarewitz, Benjamin Marshall Davies, Mark Rn Kotter*, AO Spine Knowledge Forum Spinal Cord Injury

*Corresponding author for this work

Research output: Contribution to journalArticle (Academic Journal)peer-review

17 Citations (Scopus)
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Abstract

BACKGROUND: Degenerative cervical myelopathy (DCM) arises when arthritic changes of the cervical spine cause compression and a progressive injury to the spinal cord. It is common and potentially disabling. People with DCM have among the lowest quality of life scores (Short Form Health Survey-36 item [SF-36]) of chronic disease, although the drivers of the imapact of DCM are not entirely understood. DCM research faces a number of challenges, including the heterogeneous reporting of study data. The AO Spine Research Objectives and Common Data Elements for Degenerative Cervical Myelopathy (RECODE-DCM) project is an international consensus process that aims to improve research efficiency through formation of a core outcome set (COS). A key part of COS development process is organizing outcomes into domains that represent key aspects of the disease. To facilitate this, we sought to qualitatively explore the context and impact of patient-reported outcomes in DCM on study participants.

OBJECTIVE: The goal of the research was to qualitatively explore the patient-reported outcomes in DCM to improve understanding of patient perspective and assist the organization of outcomes into domains for the consensus process.

METHODS: Focus group sessions were hosted in collaboration with Myelopathy.org, a charity and support group for people with DCM. A 40-minute session was audiorecorded and transcribed verbatim. Two authors familiarized themselves with the data and then performed data coding independently. Codes were grouped into themes and a thematic analysis was performed guided by Braun and Clarke's 6-phase approach. The themes were subsequently reviewed with an independent stakeholder with DCM, assisting in the process of capturing the true context and importance of themes.

RESULTS: Five people with DCM (3 men and 2 women) participated in the focus group session. The median age was 53 years, and the median score on the modified Japanese Orthopaedic Association scale was 11 (interquartile range 9.5-11.5), indicating the participants had moderate to severe DCM. A total of 54 codes were reviewed and grouped into 10 potential themes that captured the impact of the disability on people with DCM: acceptance of symptoms, anticipatory anxiety, coping mechanisms/resilience, feelings of helplessness, financial consequences, lack of recognition, mental health impact, loss of life control, social reclusiveness and isolation, and social stigma.

CONCLUSIONS: This qualitative analysis of the perspectives of people with DCM has highlighted a number of prevailing themes currently unmeasured in clinical research or care. The determinants of low quality of life in DCM are currently unknown, and these findings provide a novel and so far, unique perspective. Continued inclusion of online communities and use of targeted digital software will be important in establishing a consensus-based COS for patients with DCM that is inclusive of all relevant stakeholders including people with DCM.

Original languageEnglish
Article numbere18732
Pages (from-to)e18732
Number of pages12
JournalJMIR Formative Research
Volume5
Issue number2
DOIs
Publication statusPublished - 3 Feb 2021

Bibliographical note

Funding Information:
Research in the laboratory of author MRNK is supported by a core support grant from the Wellcome Trust and Medical Research Council to the Wellcome Trust–Medical Research Council Cambridge Stem Cell Institute. MRNK is supported by a National Institute for Health Research (NIHR) Clinician Scientist Award. AM is supported by a NIHR Clinician Scientist Award (NIHR-CS-2017-17-010) and the NIHR Biomedical Research Centre at the University Hospitals Bristol National Health Service (NHS) Foundation Trust and the University of Bristol. BMD is supported by a research fellowship from the Royal College of Surgeons, London.

Funding Information:
This study was supported by AO Spine through the AO Spine Knowledge Forum Spinal Cord Injury, a focused group of international spinal cord injury experts. AO Spine is a clinical division of the AO Foundation, which is an independent medically guided not-for-profit organization. Study support was provided directly through the AO Spine Research Department. Research in the laboratory of author MRNK is supported by a core support grant from the Wellcome Trust and Medical Research Council to the Wellcome Trust?Medical Research Council Cambridge Stem Cell Institute. MRNK is supported by a National Institute for Health Research (NIHR) Clinician Scientist Award. AM is supported by a NIHR Clinician Scientist Award (NIHR-CS-2017-17-010) and the NIHR Biomedical Research Centre at the University Hospitals Bristol National Health Service (NHS) Foundation Trust and the University of Bristol. BMD is supported by a research fellowship from the Royal College of Surgeons, London. This report is independent research arising from a Clinician Scientist Award, CS-2015-15-023, supported by the NIHR. The views expressed in this publication are those of the authors and not necessarily those of the NHS, the NIHR, or the Department of Health. This project is supported by the AO Spine Knowledge Forum Spinal Cord Injury as part of the AO Spine RECODE-DCM international consensus project (aospine.org/recode).

Funding Information:
This study was supported by AO Spine through the AO Spine Knowledge Forum Spinal Cord Injury, a focused group of international spinal cord injury experts. AO Spine is a clinical division of the AO Foundation, which is an independent medically guided not-for-profit organization. Study support was provided directly through the AO Spine Research Department.

Funding Information:
This report is independent research arising from a Clinician Scientist Award, CS-2015-15-023, supported by the NIHR. The views expressed in this publication are those of the authors and not necessarily those of the NHS, the NIHR, or the Department of Health. This project is supported by the AO Spine Knowledge Forum Spinal Cord Injury as part of the AO Spine RECODE-DCM international consensus project (aospine.org/recode).

Publisher Copyright:
© Danyal Zaman Khan, Siobhan Mairead Fitzpatrick, Bryn Hilton, Angus GK McNair, Ellen Sarewitz, Benjamin Marshall Davies, Mark RN Kotter, AO Spine Knowledge Forum Spinal Cord Injury.

Keywords

  • cervical
  • myelopathy
  • spondylosis
  • spondylotic
  • stenosis
  • disc herniation
  • ossification posterior longitudinal ligament
  • qualitative
  • thematic analysis
  • core outcomes set
  • consensus
  • Delphi
  • patient perspectives

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