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Toward Shared Decision-Making in Degenerative Cervical Myelopathy: Protocol for a Mixed Methods Study.

Irina Sangeorzan1, Grazia Antonacci2,3, Anne Martin4

  • 1Myelopathy.org, Cambridge, United Kingdom.

JMIR Research Protocols
|October 9, 2023
PubMed
Summary
This summary is machine-generated.

This study protocol outlines the development of a core information set (CIS) and process map to enhance shared decision-making (SDM) for degenerative cervical myelopathy (DCM). These tools aim to improve patient knowledge and support informed choices in managing this chronic spinal cord condition.

Keywords:
RECODE-DCMResearch Objectives and Common Data Elements for Degenerative Cervical Myelopathyagingchroniccommon data elementcore information setdecision-makingdegenerative cervical myelopathygeriatricpatient educationpatient engagementprocess mappingshared decision-makingspinal cordspine

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Area of Science:

  • Neuroscience
  • Clinical Medicine
  • Health Services Research

Background:

  • Degenerative cervical myelopathy (DCM) is a chronic, nontraumatic spinal cord injury with heterogeneous presentation and complex management.
  • Shared decision-making (SDM) is crucial for patient-centered care in chronic illnesses, aligning treatment with individual patient values and preferences.
  • Current gaps in patient knowledge and understanding of decision points hinder effective SDM in DCM care.

Purpose of the Study:

  • To develop a comprehensive core information set (CIS) for patients diagnosed with DCM to support informed decision-making.
  • To create a detailed process map illustrating DCM care workflows and identifying critical decision points for enhanced patient-centered care.
  • To lay the groundwork for implementing SDM tools in routine clinical practice for degenerative cervical myelopathy.

Main Methods:

  • Iterative coproduction of CIS and process maps involving key stakeholders, facilitated by Myelopathy.org.
  • A 3-round, web-based Delphi process using a baseline list from a scoping review, patient interviews, and a professional survey to develop the CIS.
  • Semistructured interviews with patients and professionals, followed by stakeholder validation, to develop the process map.

Main Results:

  • Recruitment for the Delphi consensus study commenced in April 2023.
  • Pilot-testing for process map interviews began concurrently, with an initial baseline map formulation in progress.
  • The study protocol represents the initial phase of developing SDM tools for DCM.

Conclusions:

  • This protocol initiates the investigation of SDM in degenerative cervical myelopathy (DCM).
  • The primary focus is creating an educational tool (CIS) to aid diagnosis and subsequent decision-making.
  • The broader aim is to identify critical decision junctures in DCM care to facilitate the development of SDM tools for the DCM community.