TY  - JOUR
AU  - Sangeorzan, Irina
AU  - Antonacci, Grazia
AU  - Martin, Anne
AU  - Grodzinski, Ben
AU  - Zipser, Carl M
AU  - Murphy, Rory K J
AU  - Andriopoulou, Panoraia
AU  - Cook, Chad E
AU  - Anderson, David B
AU  - Guest, James
AU  - Furlan, Julio C
AU  - Kotter, Mark R N
AU  - Boerger, Timothy F
AU  - Sadler, Iwan
AU  - Roberts, Elizabeth A
AU  - Wood, Helen
AU  - Fraser, Christine
AU  - Fehlings, Michael G
AU  - Kumar, Vishal
AU  - Jung, Josephine
AU  - Milligan, James
AU  - Nouri, Aria
AU  - Martin, Allan R
AU  - Blizzard, Tammy
AU  - Vialle, Luiz Roberto
AU  - Tetreault, Lindsay
AU  - Kalsi-Ryan, Sukhvinder
AU  - MacDowall, Anna
AU  - Martin-Moore, Esther
AU  - Burwood, Martin
AU  - Wood, Lianne
AU  - Lalkhen, Abdul
AU  - Ito, Manabu
AU  - Wilson, Nicky
AU  - Treanor, Caroline
AU  - Dugan, Sheila
AU  - Davies, Benjamin M
PY  - 2023
DA  - 2023/10/9
TI  - Toward Shared Decision-Making in Degenerative Cervical Myelopathy: Protocol for a Mixed Methods Study
JO  - JMIR Res Protoc
SP  - e46809
VL  - 12
KW  - degenerative cervical myelopathy
KW  - spine
KW  - spinal cord
KW  - chronic
KW  - aging
KW  - geriatric
KW  - patient engagement
KW  - shared decision-making
KW  - process mapping
KW  - core information set
KW  - decision-making
KW  - patient education
KW  - common data element
KW  - Research Objectives and Common Data Elements for Degenerative Cervical Myelopathy
KW  - RECODE-DCM
AB  - Background: Health care decisions are a critical determinant in the evolution of chronic illness. In shared decision-making (SDM), patients and clinicians work collaboratively to reach evidence-based health decisions that align with individual circumstances, values, and preferences. This personalized approach to clinical care likely has substantial benefits in the oversight of degenerative cervical myelopathy (DCM), a type of nontraumatic spinal cord injury. Its chronicity, heterogeneous clinical presentation, complex management, and variable disease course engenders an imperative for a patient-centric approach that accounts for each patient’s unique needs and priorities. Inadequate patient knowledge about the condition and an incomplete understanding of the critical decision points that arise during the course of care currently hinder the fruitful participation of health care providers and patients in SDM. This study protocol presents the rationale for deploying SDM for DCM and delineates the groundwork required to achieve this. Objective: The study’s primary outcome is the development of a comprehensive checklist to be implemented upon diagnosis that provides patients with essential information necessary to support their informed decision-making. This is known as a core information set (CIS). The secondary outcome is the creation of a detailed process map that provides a diagrammatic representation of the global care workflows and cognitive processes involved in DCM care. Characterizing the critical decision points along a patient’s journey will allow for an effective exploration of SDM tools for routine clinical practice to enhance patient-centered care and improve clinical outcomes. Methods: Both CISs and process maps are coproduced iteratively through a collaborative process involving the input and consensus of key stakeholders. This will be facilitated by Myelopathy.org, a global DCM charity, through its Research Objectives and Common Data Elements for Degenerative Cervical Myelopathy community. To develop the CIS, a 3-round, web-based Delphi process will be used, starting with a baseline list of information items derived from a recent scoping review of educational materials in DCM, patient interviews, and a qualitative survey of professionals. A priori criteria for achieving consensus are specified. The process map will be developed iteratively using semistructured interviews with patients and professionals and validated by key stakeholders. Results: Recruitment for the Delphi consensus study began in April 2023. The pilot-testing of process map interview participants started simultaneously, with the formulation of an initial baseline map underway. Conclusions: This protocol marks the first attempt to provide a starting point for investigating SDM in DCM. The primary work centers on developing an educational tool for use in diagnosis to enable enhanced onward decision-making. The wider objective is to aid stakeholders in developing SDM tools by identifying critical decision junctures in DCM care. Through these approaches, we aim to provide an exhaustive launchpad for formulating SDM tools in the wider DCM community. International Registered Report Identifier (IRRID): DERR1-10.2196/46809 
SN  - 1929-0748
UR  - https://www.researchprotocols.org/2023/1/e46809
UR  - https://doi.org/10.2196/46809
UR  - http://www.ncbi.nlm.nih.gov/pubmed/37812472
DO  - 10.2196/46809
ID  - info:doi/10.2196/46809
ER  -