JMIR Publications

ABSTRACT

Background:

In shared decision-making (SDM), clinicians and patients collaborate to reach evidence-based choices that reflect the unique circumstances, values, and preferences of each individual. This approach to clinical care is uniquely beneficial when embedded in the context of chronic illness where ongoing decisions and management are required and patients frequently face complex or difficult treatment decisions. SDM is, therefore, likely highly relevant to degenerative cervical myelopathy (DCM), a type of non-traumatic spinal cord injury caused by degenerative and/or congenital pathology. The chronicity, clinical heterogeneity, management complexity, and disease course of DCM engender an imperative for a patient-centric decision-making approach that diligently accounts for the unique needs, experiences, and priorities of each individual afflicted with this condition. Inadequate patient knowledge about the condition and an incomplete understanding of the critical decision points that arise along the course of care currently hinder the fruitful participation of healthcare providers and patients in SDM. This study protocol presents the rationale for deploying SDM in 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 onward informed decision-making. This is known as a Core Information Set (CIS). The secondary outcome is the creation of a detailed process map (PM) that provides a diagrammatic representation of the global care workflows and cognitive processes involved in DCM care. Characterising the critical decision points along a patient's journey will allow an effective exploration of SDM tools for routine clinical practice towards enhancing patient-centered care and improving clinical outcomes.

Methods:

Co-production of CISs and PMs is achieved through a collaborative and iterative process involving input and consensus from multiple stakeholders. This will be facilitated by Myelopathy.org, a global DCM Charity, and its Research Objectives and Common Data Elements for Degenerative Cervical Myelopathy (RECODE-DCM) community. To develop the CIS, a three-round, web-based Delphi process will be employed, 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 PM will be developed iteratively using semi-structured interviews with patients and professionals and validated by all key stakeholders to ensure its accuracy and completeness.

Results:

A multimethod approach to lay the foundations for SDM in DCM. The Delphi and PM studies are scheduled to commence in March and April 2023, respectively.

Conclusions:

This study will inform the investigation, development, and evaluation of SDM tools in DCM clinical practice. By engaging international stakeholders in this preliminary work, we provide an exhaustive launchpad for formulating SDM tools suitable for the DCM community at large.