Study Design Literature Review (Narrative) Objective To introduce the number one research priority for Degenerative Cervical Myelopathy (DCM): Raising Awareness. Methods Raising awareness has been recognized by AO Spine RECODE-DCM as the number one research priority. This article reviews the evidence that awareness is low, the potential drivers, and why this must be addressed. Case studies of success from other diseases are also reviewed, drawing potential parallels and opportunities for DCM. Results DCM may affect as many as 1 in 50 adults, yet few will receive a diagnosis and those that do will wait many years for it. This leads to poorer outcomes from surgery and greater disability. DCM is rarely featured in healthcare professional training programs and has received relatively little research funding (<2% of Amyotrophic Lateral Sclerosis or Multiple Sclerosis over the last 25 years). The transformation of stroke and acute coronary syndrome services, from a position of best supportive care with occasional surgery over 50 years ago, to avoidable disability today, represents transferable examples of success and potential opportunities for DCM. Central to this is raising awareness. Conclusion Despite the devastating burden on the patient, recognition across research, clinical practice, and healthcare policy are limited. DCM represents a significant unmet need that must become an international public health priority.

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.

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.

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Background Degenerative cervical myelopathy (DCM) is a common and disabling neurodegenerative condition. Surgical decompression is the only evidence-based treatment to halt disease progression; however, diagnosis and access to timely treatment are often delayed, which contribute to significant disability and dependence. Supporting early diagnosis and access to timely treatment is a critical priority. Exploring these challenges, Myelopathy.org has observed that people with DCM may seek osteopathy care for their symptoms, both before and after diagnosis. Objective This study aimed to describe the current interaction between osteopaths and people with DCM and understand how this may be targeted to enhance the DCM diagnostic pathway. Methods Registered osteopaths in the United Kingdom completed a web-based survey hosted by the Institute of Osteopathy, as part of their institute’s 2021 census. Responses were collected from February to May 2021. Demographic information about the respondents was captured, including age, gender, and ethnicity. Professional information captured included the year of qualification; region of practice; type of practice; and number of undiagnosed, operated diagnosed, and unoperated diagnosed DCM cases encountered per year. The completion of the survey was voluntary; however, a prize draw incentive was offered to participants. Results The demographics were heterogenous for the 547 practitioners who completed the survey. There was representation from a wide range of demographic groups, including the level of experience, gender, age, and the region of United Kingdom. At least 68.9% (377/547) of osteopaths reported encounters with DCM each year. Osteopaths most frequently encountered patients with undiagnosed DCM, with a mean of 3 patient encounters per year. This compares to 2 encounters per year with patients with diagnosed DCM. The level of practitioner experience was positively correlated with the detection of undiagnosed DCM (P<.005). The influence of practitioner experience was corroborated by a subgroup analysis looking at the relationship between practitioner age on the detection of undiagnosed DCM. Osteopaths older than 54 years encountered an average of 4.2 cases per year, whereas those younger than 35 years detected 2.9 cases per year. Osteopaths in private clinics reported encounters with a greater mean number (4.4) of undiagnosed DCM cases per year than osteopaths in other clinic types (3.0). Conclusions Osteopaths reported that they frequently consult people with DCM, including those suspected to have undiagnosed or presurgical DCM. Given this concentrated presentation of early DCM and a workforce professionally trained to examine musculoskeletal disease, osteopaths could have an important role in accelerating access to timely treatment. We included a decision support tool and specialist referral template as a tool to support onward care.