Improving Assessment of Disease Severity and Strategies for Monitoring Progression in Degenerative Cervical Myelopathy [AO Spine RECODE DCM Research Priority Number 4]

Study design Narrative Review. Objective To (i) discuss why assessment and monitoring of disease progression is critical in Degenerative cervical myelopathy (DCM); (ii) outline the important features of an ideal assessment tool and (iii) discuss current and novel strategies for detecting subtle deterioration in DCM. Methods Literature review Results Degenerative cervical myelopathy is an overarching term used to describe progressive injury to the cervical spinal cord by age-related changes of the spinal axis. Based on a study by Smith et al (2020), the prevalence of DCM is approximately 2.3% and is expected to rise as the global population ages. Given the global impact of this disease, it is essential to address important knowledge gaps and prioritize areas for future investigation. As part of the AO Spine RECODE-DCM (Research Objectives and Common Data Elements for Degenerative Cervical Myelopathy) project, a priority setting partnership was initiated to increase research efficiency by identifying the top ten research priorities for DCM. One of the top ten priorities for future DCM research was: What assessment tools can be used to evaluate functional impairment, disability and quality of life in people with DCM? What instruments, tools or methods can be used or developed to monitor people with DCM for disease progression or improvement either before or after surgical treatment? Conclusions With the increasing prevalence of DCM, effective surveillance of this population will require both the implementation of a monitoring framework as well as the development of new assessment tools.

Association of Positive MRI Findings and Clinical Outcomes in Sub-acute and Chronic Phases of Pediatric Mild Traumatic Brain Injury

ObjectiveThis study aims to examine the rates of incidental findings (IF) and radiologic common data elements (rCDE), and to explore how these magnetic resonance imaging (MRI) findings contribute to a broad assessment of clinical outcomes (symptoms, cognitive and behavioral functioning, and quality of life) in the sub-acute (SA: ∼1 week), early chronic (EC: ∼4 months), and late chronic (LC: ∼1 year) phases of pediatric mild traumatic brain injuries (pmTBI).BackgroundIt is unclear whether MRI findings have clinical implications following injury.Design/MethodsTwo hundred thirty-three pmTBI patients and 168 HC aged 8–18 completed an MRI scan and a comprehensive clinical assessment at SA visit, with a subset completing the clinical assessment at EC (182 pmTBI; 158 HC) and LC (143 pmTBI; 141 pmTBI) visits. All MRI findings were noted by board-certified neuroradiologists and coded based on published criteria for rCDE by 2 independent researchers, who were blinded to diagnosis group. A series of 2 × 3 (group [pmTBI vs HC] × MRI findings [IF vs rCDE vs normal]) generalized linear model was conducted for outcomes at each visit. Possible and probable rCDE were pooled for the latter analyses.ResultsOne hundred sixty-four participants (40.9%) showed positive MRI findings (113 IF, 43 possible rCDE, 8 probable rCDE). As expected, probable rCDE was exclusively observed in pmTBI patients (Fisher's exact one-sided = 0.012), however the incidence of IF and possible rCDE was similar between groups (χ2 = 2.969; p's = 0.085). While group effects were observed on several outcome measures, no interaction of Group × MRI findings survived the correction for multiple comparisons (p's > 0.01). An MRI findings effect (p < 0.001) was observed on child-rated Children's Behavior Questionnaire at SA visit (normal > IF and rCDE; p's = 0.009). However, this effect was no longer significant at EC and LC (p's = 0.439).ConclusionsOverall, the current results do not suggest that MRI findings have clinical implications or interacts with pmTBI to worsen outcomes.

Virtual Data Repository Stimulates Data Sharing in a Consortium

Research data may have substantial impact beyond the original study objectives. The Collaborating Consortium of Cohorts Producing NIDA Opportunities (C3PNO) facilitates the combination of data and access to specimens from nine NIDA-funded cohorts in a virtual data repository (VDR). Unique challenges were addressed to create the VDR. An initial set of common data elements was agreed upon, selected based on their importance for a wide range of research proposals. Data were mapped to a common set of values. Bioethics consultations resulted in the development of various controls and procedures to protect against inadvertent disclosure of personally identifiable information. Standard operating procedures govern the evaluation of proposed concepts, and specimen and data use agreements ensure proper data handling and storage. Data from eight cohorts have been loaded into a relational database with tables capturing substance use, available specimens, and other participant data. A total of 6,177 participants were seen at a study visit within the past six months and are considered under active follow-up for C3PNO cohort participation as of the third data transfer, which occurred in January 2020. A total of 70,391 biospecimens of various types are available for these participants to test approved scientific hypotheses. Sociodemographic and clinical data accompany these samples. The VDR is a web-based interactive, searchable database available in the public domain, accessed at www.c3pno.org. The VDR are available to inform both consortium and external investigators interested in submitting concept sheets to address novel scientific questions to address high priority research on HIV/AIDS in the context of substance use. Keywords: common data elements, data repository Abbreviations: National Institute on Drug Abuse (NIDA), Collaborating Consortium of Cohorts Producing NIDA Opportunities (C3PNO), human immunodeficiency virus (HIV), acquired immunodeficiency syndrome (AIDS), injecting drug users (IDU), virtual data repository (VDR) Correspondence: [email protected]*

Measuring What Matters Across International Long-Term Care Settings

Measuring what matters most to residents, relatives and staff in residential long-term care settings is critical, yet underdeveloped in our predominantly frailty and deficits-focused measurement frameworks. The Worldwide Elements to Harmonize Research in Long-Term Care Living Environments (WE-THRIVE) consortium has previously prioritized measurement concepts in the areas of care outcomes, workforce and staffing, person-centered care, and care context. These concepts include knowing the resident and what matters most to the resident, and outcomes such as quality of life, and personhood. We present findings of our currently recommended measures, including both general population and dementia-specific measures, such as the Person-Centered Care Assessment Tool (PCAT), the Personhood in Dementia Questionnaire (PDQ), and the ICEpop CAPability Measure for Older People (ICECAP-O). We also describe remaining gaps in existing measures that will need to be addressed to fully specify common data elements focused on measuring what matters most to residents, relatives and staff.

Laying Down the Groundwork for an International Measurement Infrastructure

The COVID-19 epidemic has brought to light the significant problems in the long-term care (LTC) sector, specifically the lack of an infrastructure to collect and aggregate data between LTC sectors in different countries. This talk will briefly describe goals of the WE-THRIVE initiative, and focus on exploring the development of “workforce and staffing” common data elements for LTC. We will describe how the subgroup is “laying down the groundwork” within this domain with various methodologies to develop CDEs related to workforce and staffing. The CDEs aim to measure staff retention and turnover, evaluating nursing supervisor effectiveness, and staff training in LTC. Anticipated challenges of this international work will also be highlighted. International research on LTC can valuably inform LTC policy and practice, and the proposed CDEs can facilitate data sharing and aggregation internationally, including low-, middle-, and high-income countries.

Challenges in the Measurement of Staffing: A Review of Reviews

The question concerning the relationship of staffing and quality of care of residents in residential long-term care (LTC) has been explored extensively; however, no consistent evidence has been brought forth so far. Inconsistent measurement of staffing might hinder this research field to move forward. We assessed its measurement in a narrative review of reviews that explore the staff – quality of care relationship. We identified 12 systematic reviews, covering 1960 to May 2018. Most studies included had a cross-sectional design, were performed in the USA and worked with secondary, administrative data (e.g., OSCAR). Comparability of studies was limited by diverse definitions and measurement methods for staffing, including data about grade-mix, number of staff, and staff-resident ratios. We suggest performing international multi-case studies to compare and contrast LTC staffing and develop appropriate international common data elements. Logic models support the description of the expected relationship between staffing aspects and quality.

Measuring What Matters in Long-Term Care: Common Data Elements in Brazil, China, and the United States

Internationally sharable common data elements on residential long-term care (LTC) settings, such as nursing homes and assisted living facilities, can facilitate comparisons across diverse LTC settings for valuable insights on LTC regulation and oversight, practice and operations, infrastructure development, human resources issues, and quality and safety. However, such insights are predicated on the premise that data elements capture information that matters to the full LTC community, including residents, relatives and staff, and are able to be collected across diverse care settings, including low-resource contexts. A critique of much current LTC measurement is its focus on deficits and loss, rather than thriving, person-centered care, and healthy aging, which have been established as important to LTC communities internationally. Further, measurement burden, cultural differences in perceptions of data sharing, and data infrastructure differences are key issues for international data. An international collaborative of LTC researchers—Worldwide Elements to Harmonize Research in Long-Term Care Living Environments (WE-THRIVE)—has developed a set of common data elements that are recommended for parsimoniously assessing key outcomes, workforce and staffing, person-centered care, and the contexts within which LTC settings operate. The studies in this symposium provide insights into the validation and implementation of WE-THRIVE recommended measures in diverse, low-resource LTC contexts, including LTC settings in Brazil, China, and rural Midwest US. Study findings validate WE-THRIVE measures, and provide new knowledge to inform capacity-building for the measurement of person-centered care and healthy aging outcomes in diverse, low-resource, LTC settings.

Common Data Elements for Workforce and Staffing Measurements in Long-Term Care

The workforce in residential long-term care (LTC) is key in providing high-quality, person-centered care for residents. However, low staffing and adverse staffing outcomes such as turnover or job dissatisfaction hinder the provision of high-quality care. International research can add valuable insights for policy and practice by learning from different settings and cultures. The initiative “To Harmonize Research In long-term care liVing Environments (WE-THRIVE)”, is led by an international group of LTC researchers to identify common data elements (CDE) for cross-comparative research that support older adults thriving in LTC. In this symposium, we will present an overview of the WE-THRIVE initiative with a specific focus on CDEs and measurement. The first talk will provide the context for the WE-THRIVE initiative, and discuss the collaborative and iterative processes required to develop the initial CDEs in the area of workforce and staffing. In the second talk, we will discuss which staff should be “in the house” to meet the needs of residents during and after a pandemic, and what type of workforce data system should be available to ensure the best quality outcomes for residents and carers. Next, current issues in the measurement of staffing in LTC based on a review of reviews of staffing’s relationship to quality of care will be discussed. Finally, we extend the debate to consider theoretical and empirical explanations for the relationship between staffing and quality in LTC and the promotion of person-centred care outcomes.

Developing a Dietary Lifestyle Ontology (DILON) to Improve the Interoperability of Dietary Data (Preprint)

BACKGROUND Dietary habits offer crucial information on one's health and form a considerable part of the Patient-Generated Health Data (PGHD). Dietary data are collected through various channels and formats; thus, interoperability is a significant challenge to reusing the data. The vast scope of dietary concepts and colloquial style of expression add difficulty to the standardization task. Common Data Elements (CDE) with metadata annotation and ontological structuring of dietary concepts address the interoperability issues of dietary data to some extent. However, challenges remaining in making culture-specific dietary habits and questionnaire-based dietary assessment data interoperable require additional efforts. OBJECTIVE The main goal of this study was to address the interoperability challenge in dietary concepts by combining ontological curation of dietary concepts and metadata annotation of questionnaire-based dietary data. Specifically, this study aimed to develop a Dietary Lifestyle Ontology (DILON) and demonstrated the improved interoperability of questionnaire-based dietary data by annotating its main semantics with DILON. METHODS By analyzing 1158 dietary assessment data elements (367 in Korean and 791 in English), 515 dietary concepts were extracted and used to construct DILON. To demonstrate the utility of DILON in improving the interoperability of multi-cultural questionnaire-based dietary data, ten Competency Questions (CQs) were developed that identified data elements that share the same dietary topics and measurement qualities. As the test cases, 68 dietary habit data elements from Korean and English questionnaires were instantiated and annotated with the dietary concepts in DILON. The competency questions were translated into Semantic Query-enhanced Web Rule Language (SQWRL), and the query results were reviewed for accuracy. RESULTS DILON was built with 260 concept classes and 486 instances and successfully validated with ontology validation tools. A small overlap (72 concepts) in the concepts extracted from the questionnaires in two languages indicates the need to pay closer attention to representing culture-specific dietary concepts. The SQWRL queries reflecting the 10 CQs yielded the correct results. CONCLUSIONS Ensuring the interoperability of dietary lifestyle data is a demanding task due to its vast scope and variations in expression. This study demonstrated that, when combined with common data elements and semantic metadata annotation, ontology can effectively mediate the interoperability of dietary data generated in different cultural contexts and expressed in various styles.