Publication
Toward Shared Decision-Making in Degenerative Cervical Myelopathy: Protocol for a Mixed Methods Study (Preprint)
Publisher:
JMIR Publications Inc.
Date:
09-03-2023
DOI:
10.2196/PREPRINTS.46809
Abstract: ealth outcomes are deeply influenced by the quality of healthcare management decisions. This connection is lified in the context of chronic illness, where self-management and decisional support considerably shape the evolution of a disease. Shared decision-making (SDM) is an approach to clinical care where clinicians and patients collaborate to reach evidence-based choices centred on the unique circumstances, values, and preferences of each in idual. When embedded in chronic care management, SDM can lead personalised treatment plans that enhance health prospects. Its impact in the oversight of degenerative cervical myelopathy (DCM), a type of non-traumatic spinal cord injury, is potentially substantial. With its chronicity, heterogenous clinical presentation, complex management, and variable disease course, DCM engenders an imperative for a patient-centric approach that accounts for each patients’ unique needs and priorities. 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. he 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-centred care and improving clinical outcomes. oth CISs and PMs 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 (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 key stakeholders. ecruitment for the Delphi consensus study began in April 2023. Concurrently, the pilot testing of PM interview subjects started at the same time, with the formulation of an initial baseline map underway. his study protocol marks the first attempt to provide a starting point for the investigation of SDM in DCM. The primary work centres on developing an educational tool for use at 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. Jointly, through these approaches we aim to provide an exhaustive launchpad for formulating SDM tools in the wider DCM community. >