ABSTRACT
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.
ABSTRACT
BACKGROUND: Individuals with lifelong illnesses need access to adequate information about their condition to make optimal health decisions. Degenerative Cervical Myelopathy (DCM) is the most common form of spinal cord dysfunction in adults worldwide. Its chronic and debilitating nature, varied impact, clinical trajectory, and management options necessitate appropriate informational support to sustain effective clinical and self-directed care strategies. However, before clinicians can meet patients' information needs, they must first have an understanding of their baseline requirements. This study explores the information needs of people with DCM (PwCM). In doing so, it provides a starting point for the development of patient education and knowledge management strategies in clinical practice. METHODS: Semi-structured interviews with PwCM were conducted using an interview guide. Interviews were audio-recorded and transcribed verbatim. Thematic analysis according to Braun and Clarke's six-phase approach was used to analyse the data. Findings were reported according to the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines. RESULTS: Twenty PwCM (65% female, 35% male), with ages ranging from 39 to 74 years old participated in the interviews. The findings indicated that the provision of information to PwCM during clinical interactions varies. Accordingly, PwCM's information needs were broad-ranging, as was the nature of the information they found useful. Three main themes were identified (1) Variation in the provision of information to PwCM during clinical interactions, (2) Variations in the information needs of PwCM, and (3) Information that PwCM find useful. CONCLUSION: Efforts must turn to adequately educating patients at the time of the clinical encounter. A comprehensive and consistent patient-centered information exchange in DCM is necessary to achieve this.
Subject(s)
Patient Education as Topic , Spinal Cord Diseases , Adult , Humans , Male , Female , Middle Aged , Aged , Qualitative Research , Self Care , Neck , Spinal Cord Diseases/therapyABSTRACT
BACKGROUND: Degenerative cervical myelopathy (DCM) is a chronic neurological condition estimated to affect 1 in 50 adults. Due to its diverse impact, trajectory and management options, patient-centred care and shared decision making are essential. In this scoping review, we aim to explore whether information needs in DCM are currently being met in available DCM educational resources. This forms part of a larger Myelopathy.org project to promote shared decision making in DCM. METHODS: A search was completed encompassing MEDLINE, Embase and grey literature. Resources relevant to DCM were compiled for analysis. Resources were grouped into 5 information types: scientific literature, videos, organisations, health education websites and patient information leaflets. Resources were then further arranged into a hierarchical framework of domains and subdomains, formed through inductive analysis. Frequency statistics were employed to capture relative popularity as a surrogate marker of potential significance. RESULTS: Of 2674 resources, 150 information resources addressing DCM were identified: 115 scientific literature resources, 28 videos, 5 resources from health organisations and 2 resources from health education websites. Surgical management was the domain with the largest number of resources (66.7%, 100/150). The domain with the second largest number of resources was clinical presentation and natural history (28.7%, 43/150). Most resources (83.3%, 125/150) were designed for professionals. A minority (11.3% 17/150) were written for a lay audience or for a combined audience (3.3%, 5/150). CONCLUSION: Educational resources for DCM are largely directed at professionals and focus on surgical management. This is at odds with the needs of stakeholders in a lifelong condition that is often managed without surgery, highlighting an unmet educational need.
Subject(s)
Decision Making, Shared , Spinal Cord Diseases , Humans , MEDLINE , Patient-Centered Care , Spinal Cord Diseases/surgeryABSTRACT
BACKGROUND: Evidence suggests that, compared to the general population, individuals with severe mental illness (SMI) are more likely to engage in online social networking and share personal experiences through blogging. However, little is known about the impact of creating and publicly sharing mental health videos (vlogging) on individuals with self-identified SMIs. AIMS: The present study aims to investigate the experiences of individuals with self-identified SMIs who vlog about their SMI on YouTube. METHODS: YouTube was systematically searched using four key search items ("schizophrenia", "bipolar disorder", "major depressive disorder" and "schizoaffective disorder"). After manually screening approximately 50 channels, a set of 30 videos by individuals with self-identified SMIs discussing their experience of vlogging was selected and transcribed verbatim. An interpretative phenomenological analysis (IPA) was employed for the analysis of the data. RESULTS: The analysis produced three global themes: Minimising Isolation; Vlogging as Therapy; and Fighting stigma. LIMITATIONS: The data collected was limited as regards depth of content by the inability to ask follow-up questions. CONCLUSIONS: The findings suggest that engaging in the act of vlogging about mental illness may benefit and encourage recovery in individuals with SMIs by providing them with peer support, enhancing self-efficacy, and reducing self-stigma. Future research should employ interviews to produce more robust data for analysis.
