Over 30 years of STEP: The Pittsburgh experience with first-episode psychosis.

AIMS: For over 30 years, combined research and treatment settings in the US have been critical to conceptualizing care for first-episode psychosis (FEP). Here we describe an early example of such a context, the Services for the Treatment of Early Psychosis (STEP) clinic, which is affiliated with the University of Pittsburgh. METHODS: We describe STEP's historical roots and establishment in the early 1990s; STEP's research and treatment contributions, alongside its growth and ongoing leadership. RESULTS: Research-based clinics, like STEP, preceded and helped pave the way for the Recovery After an Initial Schizophrenia Episode project in the US and the ensuing Coordinated Specialty Care (CSC) approach, now widely adopted in the US. Early clinic-based research at STEP helped establish protocols for psychopharmacology, the relevance of effective early treatment, including psychosocial approaches, and highlighted disparities in treatment outcomes across race/ethnicity. Multidisciplinary collaboration and dialogue with consumers contributed to early treatment, combining psychosocial and pharmacological approaches. STEP adopted CSC and is situated within a bi-state Learning Health System. STEP has retained a relatively unique 5-year treatment model and exists within continuum of care ideally suited to studying psychotic illness and treatment outcomes. CONCLUSIONS: STEP remains the largest academic FEP clinic in Pennsylvania. Academic FEP clinics like STEP will have a critical role within Learning Health Systems nationally to model participatory approaches, sustain early intervention treatment quality and ongoing treatment developments.

Confronting the dialectic between quality and access in early psychosis care in the United States: Finding the synthesis by leveraging psychological expertise.

Coordinated specialty care (CSC) is the dominant model for early psychosis care in the United States, representing a proactive recovery-oriented approach to serious mental illness in its early stages. CSC involves broad multidisciplinary support for participants, including from psychologists in some CSC teams, encompassing educational and vocational support, medication management, psychotherapy, case management, peer support, and family interventions. CSC programs have proliferated in the last 20 years, leading to a quality-access dialectic, where increasing access to treatment simultaneously prompts concerns about care quality, particularly in the context of staffing shortages and funding limits. Evidence-based psychosocial treatment, including psychotherapy, is an integral part of CSC, yet workforce training deficits, workforce turnover, and CSC financing pose threats to intervention fidelity and thus CSC participants' ability to access high-quality care. We propose an enhanced role for psychologists as a way of resolving the quality-access dialectic in the area of psychosocial treatment, specifically evidence-based therapy. We describe the potential of psychologists' skills in clinical supervision, formulation, evidence-based interventions and measurement-based care, drawing on practice examples. After considering possible limitations, we outline implementation models, for example, drawing on Early Psychosis Intervention Network and Project Extension for Community Healthcare Outcomes. We conclude with four recommendations: Psychologists should be placed in CSC team or network-leadership roles; psychological expertise should be made available to CSC teams for training, consultation, and technical assistance; psychological expertise should be used to address CSC implementation challenges; and research is needed to demonstrate psychologists' value to stakeholders. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Investigating the impact of London's ultra low emission zone on children's health: children's health in London and Luton (CHILL) protocol for a prospective parallel cohort study.

BACKGROUND: Air pollution harms health across the life course. Children are at particular risk of adverse effects during development, which may impact on health in later life. Interventions that improve air quality are urgently needed both to improve public health now, and prevent longer-term increased vulnerability to chronic disease. Low Emission Zones are a public health policy intervention aimed at reducing traffic-derived contributions to urban air pollution, but evidence that they deliver health benefits is lacking. We describe a natural experiment study (CHILL: Children's Health in London and Luton) to evaluate the impacts of the introduction of London's Ultra Low Emission Zone (ULEZ) on children's health. METHODS: CHILL is a prospective two-arm parallel longitudinal cohort study recruiting children at age 6-9 years from primary schools in Central London (the focus of the first phase of the ULEZ) and Luton (a comparator site), with the primary outcome being the impact of changes in annual air pollutant exposures (nitrogen oxides [NOx], nitrogen dioxide [NO2], particulate matter with a diameter of less than 2.5micrograms [PM2.5], and less than 10 micrograms [PM10]) across the two sites on lung function growth, measured as post-bronchodilator forced expiratory volume in one second (FEV1) over five years. Secondary outcomes include physical activity, cognitive development, mental health, quality of life, health inequalities, and a range of respiratory and health economic data. DISCUSSION: CHILL's prospective parallel cohort design will enable robust conclusions to be drawn on the effectiveness of the ULEZ at improving air quality and delivering improvements in children's respiratory health. With increasing proportions of the world's population now living in large urban areas exceeding World Health Organisation air pollution limit guidelines, our study findings will have important implications for the design and implementation of Low Emission and Clean Air Zones in the UK, and worldwide. CLINICALTRIALS: GOV: NCT04695093 (05/01/2021).

Toward Shared Decision-Making in Degenerative Cervical Myelopathy: Protocol for a Mixed Methods Study.

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.

What Do Students' Questionnaire Responses Tell Us about Their Language around Person-Centred Care? An Exploratory Sentiment Analysis.

There is a global movement for health and social care to be person-centred: supporting people's active participation when making health decisions and considering their opinions, beliefs, and needs. The World Health Organization recommend the inclusion of person-centred care in health and social care provision. This research aimed to explore Australian health and social care profession students' language around person-centred care. Final-year health and social care professions students, attending one of two Australian universities, participated in an online questionnaire. Responses were analysed and themed to an existing person-centred care framework, then a sentiment analysis was applied to each response. Of the responses collected from 90 students, 235 statements were linked to the four core values of the person-centred care framework: cultivating communication (44%); respectful and compassionate care (35%); engaging patients in managing their care (20%); and integration of care (<1%). Within these, 24 statements were positively aligned (10%); 100 statements were neutral (43%); and 111 statements contained negative sentiments (47%). Almost half of the responses were not aligned with the core values of person-centred care. This suggests that many of the final-year students are not yet conceptualizing care using a person-centred approach.

Ethical and Information Governance Considerations for Promoting Digital Social Interventions in Primary Care.

Promoting online peer support beyond the informal sector to statutory health services requires ethical considerations and evidence-based knowledge about its impact on patients, health care professionals, and the wider health care system. Evidence on the effectiveness of digital interventions in primary care is sparse, and definitive guidance is lacking on the ethical concerns arising from the use of social media as a means for health-related interventions and research. Existing literature examining ethical issues with digital interventions in health care mainly focuses on apps, electronic health records, wearables, and telephone or video consultations, without necessarily covering digital social interventions, and does not always account for primary care settings specifically. Here we address the ethical and information governance aspects of undertaking research on the promotion of online peer support to patients by primary care clinicians, related to medical and public health ethics.

Non-randomised feasibility study testing a primary care intervention to promote engagement in an online health community for adults with troublesome asthma: protocol.

INTRODUCTION: In the UK, approximately 4.3 million adults have asthma, with one-third experiencing poor asthma control, affecting their quality of life, and increasing their healthcare use. Interventions promoting emotional/behavioural self-management can improve asthma control and reduce comorbidities and mortality. Integration of online peer support into primary care services to foster self-management is a novel strategy. We aim to co-design and evaluate an intervention for primary care clinicians to promote engagement with an asthma online health community (OHC). Our protocol describes a 'survey leading to a trial' design as part of a mixed-methods, non-randomised feasibility study to test the feasibility and acceptability of the intervention. METHODS AND ANALYSIS: Adults on the asthma registers of six London general practices (~3000 patients) will be invited to an online survey, via text messages. The survey will collect data on attitudes towards seeking online peer support, asthma control, anxiety, depression, quality of life, information on the network of people providing support with asthma and demographics. Regression analyses of the survey data will identify correlates/predictors of attitudes/receptiveness towards online peer support. Patients with troublesome asthma, who (in the survey) expressed interest in online peer support, will be invited to receive the intervention, aiming to reach a recruitment target of 50 patients. Intervention will involve a one-off, face-to-face consultation with a practice clinician to introduce online peer support, sign patients up to an established asthma OHC, and encourage OHC engagement. Outcome measures will be collected at baseline and 3 months post intervention and analysed with primary care and OHC engagement data. Recruitment, intervention uptake, retention, collection of outcomes, and OHC engagement will be assessed. Interviews with clinicians and patients will explore experiences of the intervention. ETHICS AND DISSEMINATION: Ethical approval was obtained from a National Health Service Research Ethics Committee (reference: 22/NE/0182). Written consent will be obtained before intervention receipt and interview participation. Findings will be shared via dissemination to general practices, conference presentations and peer-reviewed publications. TRIAL REGISTRATION NUMBER: NCT05829265.

Data-driven strategies for increasing patient diversity in Bristol Myers Squibb-sponsored US oncology clinical trials.

BACKGROUND/AIMS: Determining whether clinical trial findings are applicable to diverse, real-world patient populations can be challenging when the full demographic characteristics of enrolled patients are not consistently reported. Here, we present the results of a descriptive analysis of racial and ethnic demographic information for patients in Bristol Myers Squibb (BMS)-sponsored oncology trials in the United States (US) and describe factors associated with increased patient diversity. METHODS: BMS-sponsored oncology trials conducted at US sites with study enrollment dates between 1 January 2013 and 31 May 2021 were analyzed. Patient race/ethnicity information was self-reported in case report forms. As principal investigators (PIs) did not report their own race/ethnicity, a deep-learning algorithm (ethnicolr) was used to predict PI race/ethnicity. Trial sites were linked to counties to understand the role of county-level demographics. The impact of working with patient advocacy and community-based organizations to increase diversity in prostate cancer trials was analyzed. The magnitude of associations between patient diversity and PI diversity, US county demographics, and recruitment interventions in prostate cancer trials were assessed by bootstrapping. RESULTS: A total of 108 trials for solid tumors were analyzed, including 15,763 patients with race/ethnicity information and 834 unique PIs. Of the 15,763 patients, 13,968 (89%) self-reported as White, 956 (6%) Black, 466 (3%) Asian, and 373 (2%) Hispanic. Among 834 PIs, 607 (73%) were predicted to be White, 17 (2%) Black, 161 (19%) Asian, and 49 (6%) Hispanic. A positive concordance was observed between Hispanic patients and PIs (mean = 5.9%; 95% confidence interval (CI) = 2.4, 8.9), a less positive concordance between Black patients and PIs (mean = 1.0%; 95% CI = -2.7, 5.5), and no concordance between Asian patients and PIs. Geographic analyses showed that more non-White patients enrolled in study sites in counties with higher proportions of non-White residents (e.g. a county population that was 5%-30% Black had 7%-14% more Black patients enrolled in study sites). Following purposeful recruitment efforts in prostate cancer trials, 11% (95% CI = 7.7, 15.3) more Black men enrolled in prostate cancer trials. CONCLUSION: Most patients in these clinical trials were White. PI diversity, geographic diversity, and recruitment efforts were related to greater patient diversity. This report constitutes an essential step in benchmarking patient diversity in BMS US oncology trials and enables BMS to understand which initiatives may increase patient diversity. While complete reporting of patient characteristics such as race/ethnicity is critical, identifying diversity improvement tactics with the highest impact is essential. Strategies with the greatest concordance to clinical trial patient diversity should be implemented to make meaningful improvements to the diversity of clinical trial populations.

Trauma and Trauma-Informed Care in Early Intervention in Psychosis: State of Implementation and Provider Views on Challenges.

OBJECTIVE: Although trauma is increasingly recognized as a major risk factor for psychosis and for its link to treatment outcomes, the landscape of trauma-related practices in specialized early psychosis services in the United States and other countries remains only poorly characterized. Research documenting the perspectives of frontline providers is also lacking. The primary goals of this study were to document the state of trauma-related policy implementation in early intervention in psychosis (EIP) programs and to gather provider perspectives. METHODS: This was a mixed-methods project involving an international EIP provider survey, followed by in-depth provider interviews. The survey was disseminated in Australia, Canada, Chile, the United Kingdom, and the United States. In total, 164 providers, representing 110 unique sites, completed the survey. Frequencies were calculated for responses to survey items, and open-ended responses were analyzed with a systematic content analysis. RESULTS: The survey findings suggested low implementation rates for a variety of assessment and support practices related to trauma and trauma-informed care. Coding of open-ended responses revealed numerous concerns and uncertainties among providers regarding the relationship between trauma and psychosis and the state of the EIP field. CONCLUSIONS: An expansion of research and service development aimed at better meeting the trauma-related needs of young people with psychosis is essential, with implications for EIP outcomes and service user and staff experiences.

Device-Measured Change in Physical Activity in Primary School Children During the UK COVID-19 Pandemic Lockdown: A Longitudinal Study.

BACKGROUND: Lockdown measures, including school closures, due to the COVID-19 pandemic have caused widespread disruption to children's lives. The aim of this study was to explore the impact of a national lockdown on children's physical activity using seasonally matched accelerometry data. METHODS: Using a pre/post observational design, 179 children aged 8 to 11 years provided physical activity data measured using hip-worn triaxial accelerometers worn for 5 consecutive days prepandemic and during the January to March 2021 lockdown. Multilevel regression analyses adjusted for covariates were used to assess the impact of lockdown on time spent in sedentary and moderate to vigorous physical activity. RESULTS: A 10.8-minute reduction in daily time spent in moderate to vigorous physical activity (standard error: 2.3 min/d, P < .001) and a 33.2-minute increase in daily sedentary activity (standard error: 5.5 min/d, P < .001) were observed during lockdown. This reflected a reduction in daily moderate to vigorous physical activity for those unable to attend school (-13.1 [2.3] min/d, P < .001) during lockdown, with no significant change for those who continued to attend school (0.4 [4.0] min/d, P < .925). CONCLUSION: These findings suggest that the loss of in-person schooling was the single largest impact on physical activity in this cohort of primary school children in London, Luton, and Dunstable, United Kingdom.

Osteopathy in the Early Diagnosis and Management of Degenerative Cervical Myelopathy: National Survey.

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.

Student Health and Social Care Professionals' Health Literacy Knowledge: An Exploratory Study.

Health literacy is essential for shared decision-making and improved health outcomes, and patients with inadequate health literacy often need additional support from health and social care professionals. Despite global calls for developing tertiary-level health literacy education, the extent of this in Australian health and social care professional degrees is unknown. This research explored students' health literacy knowledge across five health and social care professional disciplines. A web-based questionnaire was disseminated to student health and social care professionals enrolled in one of two Australian universities. Questions explored students' factual and conceptual health literacy knowledge, and responses were inductively themed and reported descriptively. Of the 90 students who participated, the depth of health literacy knowledge was low. Students frequently identified understanding as components of health literacy; however, most students did not identify health information access, appraisal and use. Additionally, students' knowledge of helping patients with inadequate health literacy was limited. Adjusting patient education to their health literacy level and evaluating patient understanding was poorly understood. Without a solid understanding of fundamental health literacy principles, newly-graduated health and social care professionals will be poorly equipped to facilitate patients' health literacy-related challenges in the community. Further exploration of health literacy education is urgently recommended to identify areas for improvement.

Patient and public involvement in research: the need for budgeting PPI staff costs in funding applications.

BACKGROUND: Patient and Public Involvement (PPI) groups are becoming more established as collaborators with academic researchers and institutions to ensure that research is important and relevant to end users, and to identify areas that might have ethical considerations, as well as to advise on solutions. The National Institute for Health and Care Research UK Standards for Public Involvement in Research embody best practice for PPI, including support and learning opportunities that build confidence and skills for members of the public to play an invaluable and mutually productive role in research. However, the pivotal role of research and professional services (management and administrative) staff within academic institutions for sustaining and making this involvement successful is often overlooked. MAIN BODY: It takes significant effort to develop and sustain effective PPI in research. The six UK Standards for Public Involvement highlight the need for consistent, inclusive, well-governed and mutually respectful working relationships to sustain effective PPI contributions in health research. Productivity across a team of lay and academic members requires organisation and experience of implementing these standards by a dedicated PPI team, yet advice on PPI finances is usually focused on costs for patient panel members, and budgets in funding applications rarely consider the wider PPI team behind this involvement. As an exemplar, we reflect on how the Asthma UK Centre for Applied Research (AUKCAR) has developed a dedicated PPI Platform, with guidance for how PPI should be embedded throughout the research lifecycle, and detailed information to support the costing of PPI in funding applications. AUKCAR's work with established researchers, as well as Early Career Researchers and PhD students, is at the heart of a campaign to raise awareness of the importance of PPI in effective research planning. CONCLUSION: Focusing attention on the staff behind best practice involvement in health research may stimulate a much-needed discussion to ensure flourishing PPI capacity, with significant patient and public benefit. With adaptation, the PPI expertise within AUKCAR can be translated more widely.

Patient and Public Involvement (PPI) is important for high-quality research. It makes research more relevant to patients, and makes the results more useful for the health service. To make patient involvement effective, we need skilled staff with experience of involving lay members in research, as well as engaging researchers in PPI activities. There is little guidance about staff time needed to recruit and support lay members and researchers properly. This means that we still do not understand the true cost of including patients and the public in research, and we often under cost this in funding applications. As an example, we reflect on how the Asthma UK Centre for Applied Research (AUKCAR) has organised staff to support for its patient involvement. We give some thoughts on how to cost PPI staff time in funding applications. By focusing attention on the team behind the lay volunteers, we hope to encourage a much-needed discussion about the support involved, and deliver more patient benefits. The AUKCAR experience can be adapted to other research topics and contexts.

The impact on central line-associated bloodstream infection rates following the introduction of a closed system transfer device in oncology wards.

Prevention of hazardous drug exposure is essential in averting unnecessary health risks to health care workers (HCW). To address the risk to HCWs when handling hazardous drugs, engineering controls can be utilized to reduce the exposure. A closed system transfer device (CSTD) was introduced for hazardous drugs administration in 6 oncology wards; this new CSTD was associated with a significant increase in CLABSI rates.

'You have to have a level of trust': Consumer-described health literacy barriers and enablers to engaging with health care professionals.

ISSUE ADDRESSED: Health literacy - the degree to which people can access, understand and use health information - is essential for shared decision-making and improved health outcomes. Health consumers' ability to engage with health care professionals (HCPs) is influenced by their health literacy capabilities. This research sought to understand health literacy-related barriers and enablers to engage with non-physician HCPs as experienced by consumers. METHODS: A qualitative descriptive approach was undertaken. A semi-structured interview guide was used, incorporating five health literacy domains described in the Health Literacy Questionnaire that related to consumers' engagement with health professionals. Audio- or digitally-recorded interviews were conducted with Australian health consumers, and transcribed and themed using the Patient-centred Access to Care framework as a template. RESULTS: Interviewing 30 consumers revealed that HCPs' clinical skills often enabled consumers to seek engagement; however, during active engagement their interpersonal skills became a key enabler. Conversely, a lack of developed interpersonal skills in HCPs was frequently seen as a barrier to consumer engagement. Barriers to engagement were also created when HCPs' information did not match what consumers discovered from other sources. However, consumers self-reported that they were unable to appraise health information at least some of the time. CONCLUSION: Barriers and enablers to consumers' engagement with HCPs were identified across each of the five relevant health literacy domains. SO WHAT?: HCPs should be aware of the importance of interpersonal skills and clear health information suitable for consumers with lower health literacy. Additionally, time dedicated to educating consumers on information appraisal could act as a further enabler to effective engagement.

A scoping review of information provided within degenerative cervical myelopathy education resources: Towards enhancing shared decision making.

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.

Improving Awareness Could Transform Outcomes in Degenerative Cervical Myelopathy [AO Spine RECODE-DCM Research Priority Number 1].

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.