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Existing literature suggests that transgender women (TW) may be at high risk for adverse mental health due to stress attributed to combined experiences of stigma and complex social and structural vulnerabilities. Little research has examined how these co-occurring experiences relate to mental health. We aimed to test a theoretically driven conceptual model of relationships between stigma, social and structural vulnerabilities, and mental health to inform future intervention tailoring.
Partial least square path modeling followed by response-based unit segmentation was used to identify homogenous clusters in a diverse community sample of United States (US)-based TW (N = 1418; 46.2% White non-Hispanic). This approach examined associations between latent constructs of stigma (polyvictimization and discrimination), social and structural vulnerabilities (housing and food insecurity, unemployment, sex work, social support, and substance use), and mental health (post-traumatic stress and psychological distress).
The final conceptual model defined the structural relationship between the variables of interest within stigma, vulnerability, and mental health. Six clusters were identified within this structural framework which suggests that racism, ethnicism, and geography may be related to mental health inequities among TW.
Our findings around the impact of racism, ethnicism, and geography reflect the existing literature, which unfortunately shows us that little change has occurred in the last decade for TW of color in the Southern US; however, the strength of our evidence (related to sampling structure and sample size) and type of analyses (accounting for co-occurring predictors of health, i.e., stigma and complex vulnerabilities, reflecting that of real-world patients) is a novel and necessary addition to the literature. Findings suggest that health interventions designed to offset the negative effects of stigma must include anti-racist approaches with components to reduce or eliminate barriers to resources that contribute to social and structural vulnerabilities among TW. Herein we provide detailed recommendations to guide primary, secondary, and tertiary prevention efforts.
This study demonstrated the importance of considering stigma and complex social and structural vulnerabilities during clinical care and design of mental health interventions for transgender women who are experiencing post-traumatic stress disorder and psychological distress. Specifically, interventions should take an anti-racist approach and would benefit from incorporating social support-building activities.
Supporting care receivers in Activities of Daily Living (ADL), irrespective of diagnosis, setting, or cultural background, lies at the heart of fundamental nursing care. The pursuit of quality ADL care becomes increasingly challenging with the changing complexity of care needs. ADL care delivery is often undervalued and is considered a low-status task despite its crucial importance to care receivers. This study aims to synthesize challenges in ADL care irrespective of the care setting.
In the mixed qualitative methods study, we used expert panel consultations, world café sessions, and a rapid literature review. For data analysis, we simultaneously analyzed the three data sets using inductive and deductive inquiry.
We identified four challenges and their corresponding subthemes. They are (1) Undervalued common-sense work versus complex, high-skilled care provision; (2) Limitations in professional reflective clinical decision-making; (3) Missed opportunities for shared ADL decisions; and (4) Meeting ADL care needs in a high-throughput system.
These challenges reveal the complexity of ADL care and how its paradoxical narrative relates to the conditions in which nursing professionals struggle to create opportunities, for reflective clinical reasoning and shared ADL decisions, by facing organizational and environmental barriers.
This study is relevant to nursing professionals, care organizations, policymakers, and researchers aiming to improve ADL care and provide insights into challenges in ADL care. This study forms the starting point for a changing narrative on ADL nursing care and subsequent quality improvements in the form of, for example, guidelines for nursing professionals.
Background
A gap in research about the trajectories of function among men and women aging with functional limitations because of multiple sclerosis (MS) hinders ability to plan for future needs.
Objectives
Using a biopsychosocial model, we characterize how men and women with MS report changes over time in their function and test how person-level differences in age, diagnosis duration, and sex influence perceived function.
Methods
A longitudinal study with multiple waves of surveys was used to collect data on participant perceptions of function, as well as demographic and contextual variables. Self-reported functional limitation was measured over a decade. The study participants were community residing with physician-diagnosed MS.
Results
The people with MS had a diagnosis duration of about 13 years and were around 51 years of age, on average, at the start of the study. They were primarily women and non-Hispanic White. We analyzed the data using mixed-effects models. Subject-specific, functional limitation trajectories were described best with a quadratic growth model. Relative to men, women reported lower functional limitation and greater between-person variation and rates of acceleration in functional limitation scores.
Discussion
Results suggest function progressed through two pathways for over a decade, particularly closer to diagnoses. Variability in trajectories between individuals based on sex and years since diagnosis of disease indicates that men and women with MS may experience perceptions of their function with age differently. This has implications for clinician advice to men and women with MS. Background
Very preterm infants (less than 32 weeks gestational age) experience acute morbidity during their stay in a neonatal intensive care unit. Because of their prematurity and frequent laboratory testing, they experience anemia, requiring correction with packed red blood cell (PRBC) transfusion(s). PRBC transfusions have been linked to neonatal morbidity, such as necrotizing enterocolitis, but never signs and symptoms of physiological stability.
Objective
The secondary data analysis aimed to examine very preterm infants’ physiological stability before, during, and after PRBC transfusions.
Methods
A within-case, mixed-methods design was used in a secondary data analysis for 16 transfusion cases from 13 very preterm infants.
Results
The findings showed very preterm infants with physiological variables falling within defined limits based on gestational age during the transfusion. Two contrasting case exemplars will be presented.
Discussion
PRBC transfusions are necessary and prevent morbidity in very preterm infants. Observing instability during transfusions and prospectively studying hypothermia, cardiac instability, and thermal gradients is essential to design interventions to decrease morbidity associated with PRBC transfusions. Desarrollar una teoría de rango medio de la percepción materna del peso corporal del
hijo. Esta teoría fue desarrollada de forma deductiva a partir del concepto de percepción social y de
hallazgos científicos publicados, siguiendo los pasos de síntesis de teoría. Esta teoría tiene elementos de entrada y la percepción maternal del peso del hijo es el resultado, que influye en las actitudes
y conductas maternas relacionadas al peso corporal del hijo. Esta teoría ofrece una explicación de
cómo las madres construyen el juicio respecto al peso corporal de su hijo. Los profesionales podrían
trabajar con los factores que influyen en la percepción materna del peso corporal del hijo.
Intimate partner violence (IPV) is associated with multiple adverse health consequences. Nurses (including midwives) are well positioned to identify patients subjected to IPV, and provide care, support, and referrals. However, studies about nursing response to IPV are limited especially in low- and middle-income countries (LMICs). The study aimed to examine nurses' perceived preparedness and opinions toward IPV and to identify barriers and facilitators in responding to IPV.
An explanatory sequential mixed-methods study was conducted by collecting quantitative data first and explaining the quantitative findings with qualitative data.
The study was conducted in two tertiary general hospitals in northeastern (Shenyang city) and southwestern (Chengdu city) China with 1500 and 1800 beds, respectively. A total of 1071 survey respondents (1039 female [97.0%]) and 43 interview participants (34 female [79.1%]) were included in the study. An online survey was administered from September 3 to 23, 2020, using two validated scales from the Physician Readiness to Manage Intimate Partner Violence Survey. In-depth, semistructured interviews were conducted from September 15 to December 23, 2020, guided by the Consolidated Framework for Implementation Research.
The survey respondents largely agreed with feeling prepared to manage IPV, e.g., respond to discourses (544 [50.8%] of 1071) and report to police (704 [65.7%] of 1071). The findings of surveyed opinions (i.e., Response competencies; Routine practice; Actual activities; Professionals; Victims; Alcohol/drugs) were mixed and intertwined with social desirability bias. The quantitative and qualitative data were consistent, contradicted, and supplemented. Key qualitative findings were revealed that may explain the quantitative results, including lack of actual preparedness, absence of IPV-related education, training, or practice, and socially desirable responses (especially those pertaining to China's Anti-domestic Violence Law). Commonly reported barriers (e.g., patients' reluctance to disclose; time constraints) and facilitators (e.g., patients' strong need for help; female nurses' gender advantage), as well as previously unreported barriers (e.g., IPV may become a workplace taboo if there are healthcare professionals known as victims/perpetrators of IPV) and facilitators (e.g., nurses' responses can largely meet the first-line support requirements even without formal education or training on IPV) were identified.
Nurses may play a unique and important role in responding to IPV in LMICs where recognition is limited, education and training are absent, policies are lacking, and resources are scarce. Our findings support World Health Organization recommendations for selective screening.
The study highlights the great potential of nurses for IPV prevention and intervention especially in LMICs. The identified barriers and facilitators are important evidence for developing multifaceted interventions to address IPV in the health sector.
To explore the effects of power dynamics and hospital organizational structure upon neonatal intensive care nurses' experiences caring for infants and families from a substance-exposed pregnancy (SEP).
This secondary data analysis further investigated the results of a primary study after the original analysis suggested differences in work environments may impact relationship-building opportunities between nurses and mothers/families. Critical discourse analysis served as both the theoretical lens and analytic technique.
Nine (9) nurses from the southeast region of the United States (U.S.) were interviewed in 2019. Fifty-one (51) stories of caregiving experiences were analysed with a focus on narratives related to organizational structure and care delivery.
Study findings revealed nurses experienced challenges providing high-quality, family-centered care for patients in the neonatal intensive care unit (NICU) affected by substances during pregnancy. Nurses described the central challenge of workload, exacerbated by power imbalances and structural constraints within the hospital's organizational structure. Findings suggest workload issues may endorse stigma by inhibiting opportunities to build relationships. Nurses report manageable workloads can support healthcare teams and recipients of care.
The study suggests power imbalances between nurses, families and adjacent healthcare professionals can inhibit the delivery of high-quality care. Supporting healthcare teams and recipients of care while centering the role of organizational structure is critical. Questions emerged about workload demands impacting the potential production of stigma in clinical environments.
This study examines the intersection of nurses' care experiences and hospital organizational structure. It identifies how the unique needs of caring for infants and families from a SEP increase the complexity of power imbalances and organizational constraints to further increase workload demands. Findings have implications for global healthcare organization leaders who build and maintain the structural integrity of clinical environments and nurse leaders who advocate and guide clinical teams to provide high-quality care in stressful healthcare environments.
EQUATOR guidelines were followed, using the COREQ checklist.
NICU nurses were interviewed about their care-provision experiences. Interviews were analysed in the primary study and the current analysis of secondary data.
Finding out whether there are differences in the levels of stress and burnout between workers providing care to dependent adults and those caring for independent older adults would provide comparative information about two different models of care. During the COVID-19 pandemic, workers caring for older adults were subjected to maladaptive situations that produced stress and burnout.
A cross-sectional survey design using the STROBE checklist.
A total of 900 nursing home and égidas workers were assessed for stress and burnout. Data were collected online from October 2020 to February 2021, when Puerto Rico was experiencing the peak of the third wave of COVID-19. MANOVAs were performed to study the interactions between the workplace and having had COVID, the workplace and the size of institution and the workplace and position held.
October 2020 to February 2021.
All interactions were significant. Nursing homes showed higher levels of stress and burnout when workers had undergone COVID, when the size of the institution was larger and for technical staff other services; in égidas, having undergone COVID did not influence stress or burnout, which increased when the institution was smaller and for executive staff.
This study showed that the effects of the COVID-19 pandemic affected nursing home workers more significantly than those working in other types of residential models with independent older adults.
Applying preventive interventions aimed at reducing stress and burnout would facilitate the adaptation of workers caring for older adults and help to improve the quality of care.
This study analysed the impact of COVID-19 on the stress and burnout of workers providing services to older adults. Nursing home workers who have had COVID-19 have higher stress and burnout. The size of the institution has a different effect depending on whether older adults are dependent or independent. Workers in institutions dedicated to the care of the older adults.
This study has adhered to the relevant EQUATOR guidelines: STROBE.
During the different waves of the COVID-19 pandemic, it was difficult to establish direct contact with workers providing care to older adults; this reason made it necessary to apply online systems to obtain information. The workers appreciated the fact that the implications for stress and burnout of the situation experienced during this difficult process were investigated.
To explore collaborative practice and perceptions and attitudes of key stakeholders on collaboration in type 2 diabetes management in a tertiary care setting.
Understanding collaborative practice in diabetes care in developing countries helps to design and provide patient-centred and cost-effective care.
An exploratory qualitative study.
Interviews were undertaken with 30 patients and 18 health professionals and policymakers. Thematic data analysis was undertaken to explore collaborative practice and examine participant perspectives on collaboration in diabetes management. We compared the findings with D'Amour's Collaboration Framework to determine the level of collaboration.
Most participants reported a lack of collaborative practice in diabetes management, while they appreciated its importance in improving care. Perceptions varied with respect to what constituted collaborative practice. Three themes were identified: (1) perspectives of key stakeholders on current practice of collaboration; (2) impediments to collaborative practice; (3) strategies to improve collaborative practice. Analyses of the themes using D'Amour's Collaboration Framework indicated a low level of collaboration among physicians, nurses, pharmacists and policymakers, which was attributed to workload and time pressures on health professionals, power dynamics and lack of role clarity of all actors in collaborative action. Participants commented on the need to improve collaboration by establishing strong leadership and governance at different healthcare structure levels, which is committed to coordinating collaboration and developing collaborative frameworks and policies that guide collaborative undertaking.
Perceived shortcomings of collaboration were attributed to inadequate resources, power dynamics, a lack of strong team functioning and policies. Participants' positive perceptions provide an opportunity to improve collaborative practice through incorporation of collaborative frameworks and policies.
The findings in this study inform development of tailored and patient-centred diabetes care in tertiary care settings in sub-Saharan Africa.
The study was reported in accordance with the COREQ checklist.
Patients or the public were not involved in the design, analysis or interpretation of the data in this study. However, patients and healthcare providers participated in pilot interviews, which helped refine the interview guides. The summary of the findings of the study was also discussed with patients and healthcare providers, where they provided feedback.
No abstract available Commentary on: Mazalová L, Gurková E, Štureková L. Nursing students' perceived stress and clinical learning experience. Nurse Educ Pract. 2022 Oct;64:103 457. doi: 10.1016/j.nepr.2022.103457. Epub 2022 Sep 24.
Clinical nursing supervisors may be unfamiliar with the demands and challenges students encounter in the clinical environment, and the amount of encouragement and assistance they require to be successful in the nursing profession. Further research should focus on intervention studies examining how clinical nursing supervisors control nursing student clinical stressors to improve student outcomes.
The clinical environment is the prevailing source of stress during nursing students’ educational experience. Although clinical supervisors are predominantly supportive to students in the clinical environment, current literature recognises certain clinical nursing supervisor actions and behaviours as causes of nursing student clinical stress.
Commentary on: Clair A, Baker E. Cold homes and mental health harm: Evidence from the UK Household Longitudinal Study. Soc Sci Med. 2022 Dec;314:115461. doi: 10.1016/j.socscimed.2022.115461. Epub 2022 Oct 22 .
Supporting people to live in warm housing during a period of increasing living and energy costs in many countries will avoid social, economic and mental health harm. Further research to understand the pathways between cold housing and increased mental health distress is needed.
Cold housing, driven by poor housing quality and energy poverty, is a significant public health issue in many countries.
by Bryan McCann, Simon C. Hunter, Kareena McAloney-Kocaman, Paul McCarthy, Jan Smith, Eileen Calveley
The coronavirus (COVID-19) pandemic had wide-ranging negative impacts on mental health. The pandemic also placed extraordinary strain on frontline workers who were required to continue working and putting themselves at risk to provide essential services at a time when their normal support mechanisms may not have been available. This paper presents an evaluation of the Time for You service, a rapidly developed and implemented intervention aimed at providing frontline workers with quick access to flexible online mental health support. Time for You provided service users with three service options: self-guided online cognitive behavioural therapy (CBT) resources; guided engagement with online CBT resources; 1–1 psychological therapy with trainee sport and exercise psychologists and trainee health psychologists. A process evaluation informed by the Consolidated Framework for Implementation Research considered service fidelity, adaptations, perceived impact, reach, barriers, and facilitators. Interviews with project managers (n = 5), delivery staff (n = 10), and service users (n = 14) explored perceptions of the service implementation and outcomes, supported by data regarding engagement with the online CBT platform (n = 217). Findings indicated that service users valued the flexibility of the service and the speed with which they were able to access support. The support offered by Trainee Psychologists was perceived to be of high quality, and the service was perceived by service users to have improved mental health and wellbeing. The rapid implementation contributed to issues regarding appropriate service user screening that led to trainee psychologists being unable to provide the service users with the support they needed as the presenting issues were outside of trainees’ competencies. Overall, the findings suggest that interventions offering flexible, online psychological support to frontline workers can be an effective model for future interventions. Trainee psychologists are also able to play an important role in delivering such services when clear screening processes are in place.To refine the Rushton Moral Resilience Scale (RMRS) by creating a more concise scale, improving the reliability, particularly of the personal integrity subscale and providing further evidence of validity.
Healthcare workers are exposed to moral adversity in practice. When unable to preserve/restore their integrity, moral suffering ensues. Moral resilience is a resource that may mitigate negative consequences. To better understand mechanisms for doing so, a valid and reliable measurement tool is necessary.
Cross-sectional survey.
Participants (N = 1297) had completed ≥1 items on the RMRS as part of the baseline survey of a larger longitudinal study. Item analysis, confirmatory factor analyses, reliability analyses (Cronbach's alpha), and correlations were used to establish reliability and validity of the revised RMRS.
Item and confirmatory factor analysis were used to refine the RMRS from 21 to 16 items. The four-factor structure (responses to moral adversity, personal integrity, relational integrity and moral efficacy) demonstrated adequate fit in follow-up confirmatory analyses in the initial and hold-out sub-samples. All subscales and the total scale had adequate reliabilities (α ≥ 0.70). A higher-order factor analysis supports the computation of either subscale scores or a total scale score. Correlations of scores with stress, anxiety, depression and moral distress provide evidence of the scale's validity. Reliability of the personal integrity subscale improved.
The RMRS-16 demonstrates adequate reliability and validity, particularly the personal integrity subscale. Moral resilience is an important lever for reducing consequences when confronted with ethical challenges in practice. Improved reliability of the four subscales and having a shorter overall scale allow for targeted application and will facilitate further research and intervention development.
Data came from a larger study of Canadian healthcare workers from multiple healthcare organizations who completed a survey about their experiences during COVID-19.
To explain the process taken by Chinese family care partners of older adults in the Greater Toronto Area, Canada, to access health and social services in their communities. The research question was: What mechanisms and structures impact the agency of Chinese family care partners of older adults, in the process of assisting them to access health and social services?
This qualitative study was informed by critical realism.
Chinese family care partners of older adults in the Greater Toronto Area, Canada, were interviewed from August 2020 to June 2021. Transcripts underwent thematic analysis.
Twenty-eight Chinese family care partners expressed a firm commitment to maintain caregiving conditions and to judiciously access health and social services. Their commitment was made up of three parts: (a) legislative and cultural norms of family, work, and society; (b) their perseverance to fill gaps with limited social and financial resources; (c) the quality of their relationship to, and illness trajectory of the older adults. The social structures created tension in how Chinese family care partners made decisions, negotiated resources, and ultimately monitored and coordinated timely access with older adults.
Participants' commitment and perseverance were conceptualized as “grit,” central to their agency to conform to legislative and cultural norms. Moreover, findings support grit's power to motivate and sustain family caregiving, in order for older adults to age in place as long as possible with finite resources.
This study highlights the importance of cultural awareness education for nurses, enabling continuity of care at a systems level and for a more resilient healthcare system.
Family care partners' grit may be crucial for nurses to harness when together, they face limited access to culturally appropriate health and social services in a system grounded in values of equity and inclusion, as in Canada.
When writing this manuscript, we adhered to relevant EQUATOR guidelines of the Consolidated Criteria for Reporting Qualitative Research (COREQ).
No patient or public involvement.
The aim of this study was to investigate the relationship between advanced nurse practitioners' self-leadership and commitment to the workplace, work engagement and influence at work.
The concept of self-leadership is particularly suited to ANPs, who are required to take responsibility for their work roles. An optimum balance between the ANPs' psychosocial work environment and self-leadership may positively impact work ability in this group and can be compromised by interactions between and among these variables.
A cross-sectional correlational study was conducted from July 2020 to August 2020 on 153 ANPs across a national health service.
The survey was distributed to respondents online. The revised self-leadership questionnaire was used to measure self-leadership, and three scales from the Copenhagen Psychosocial Questionnaire were used to measure commitment to the workplace, work engagement and influence at work. Multiple linear regression was used to examine the association between self-leadership and the psychosocial variables.
ANPs with high levels of self-leadership reported high levels of work engagement and commitment to the workplace. No relationship was found between self-leadership and influence at work.
Improving self-leadership among ANPs by involving them in strategic leadership activities at an organizational level could be an effective strategy for optimizing the role and facilitating ANPs to contribute at an organizational level beyond the clinical interface. However, organizational support is required to ensure that ANPs practise to the full potential of their training and capability.
No patient or public contribution.
This study provided new evidence of a relationship between ANPs' self-leadership and psychosocial factors. This study found that ANPs with high levels of self-leadership reported high levels of work engagement and commitment to the workplace. Policymakers and organizational leaders can optimize the ANP role and facilitate ANPs to contribute strategically to improve care systems. This study identifies a relationship between ANPs' self-leadership and specific psychosocial variables.
Intensive care unit (ICU) dying patients are the most important source of organ donation. This study explores the reasons affecting organ donation in the Chinese sociocultural context from the perspectives of coordinators and physicians, and further seeks countermeasures to alleviate the shortage of organs.
Semistructured interviews conducted in a large tertiary hospital in China.
15 respondents (including 8 organ coordinators and 7 ICU physicians) were interviewed. Participants were invited to describe the factors that influence organ donation and the underlying reasons behind it. Bronfenbrenner’s socioecological system model was used as theoretical support to construct a theoretical model of the factors influencing organ donation. Respondents participated in semistructured qualitative interviews that were audio-recorded and transcribed. The relevant data were analysed using thematic analysis.
Four themes that influenced organ donation were identified including the influence of the deceased person’s attributes, immediate family members, surrounding people and the environment, and the social-level factors. In addition, we obtained four strategies from the interviews to improve the organ shortage to ameliorate the current supply–demand imbalance in organ donation. These include multilevel publicity, relevant policy support, increasing other forms of supply and reducing organ demand.
Factors affecting organ donation after the death of a Chinese citizen include the personal characteristics of the donor, the decisions of family members such as immediate family members and the indirect influence of surrounding people such as collateral family members, in addition to factors related to the humanistic environment, religious beliefs and social opinion.
The aims of this study were to investigate the association between educational level and musculoskeletal pain and physical function, respectively, in persons 60–70 years old, and to investigate if the association changed from 2010 to 2017.
This is a sex-stratified, cross-sectional study based on data from the Danish Health and Morbidity Survey in 2010 (n=15 165) and in 2017 (n=14 022).
Self-reported data from respondents who were 60–70 years old and reported data for pain or physical function, sociodemographic, education and behavioural factors were included.
Prevalence of pain and physical limitations.
Among men, a high educational level was associated with reduced odds of pain compared with low educational level (OR 0.56 (95% CI 0.41; 0.74)). Medium and high educational levels were associated with reduced odds of pain in women (0.74 (0.59; 0.92) and 0.64 (0.41; 1.00), respectively). High educational level was associated with reduced odds of physical limitations in men (0.35 (0.19; 0.65)) and women (0.33 (0.14; 0.78)). The interaction terms between time and education were not associated with pain and physical function, respectively.
High education was associated with reduced musculoskeletal pain and reduced limitations of physical function. The association between education and musculoskeletal pain and physical function did not change significantly over time. Musculoskeletal pain during the past 14 days and chronic pain among old men and women 60–70 years and their level of physical function contribute to important knowledge of a group near the retirement age. The future perspectives illustrate trends and importance of focusing on adapting job accommodations for senior workers.
Lung nodules are one of the most prevalent diseases. Medical imaging methods have a high false positive rate for distinguishing malignant nodules from benign nodules. Therefore, developing new technologies with high accuracy for screening malignant nodules is of great importance for lung nodule surveillance. Use of flow cytometry to detect biomarkers in blood macrophages (epitop detect in macrophages/macrophages) has opened a new era for early and noninvasive diagnosis of cancer. This planned study aims to examine whether the peripheral blood macrophage factors Apo10 and TKTL1 accurately distinguish malignant nodules from benign nodules.
We plan to enrol in this study 3825 participants with lung nodules who will attend their annual physical examination at Sun Yat-sen University Cancer Center. Apo10 and TKTL1 levels in all patients will be tested at 60 min after their last meal every 6 months during their 3-year follow-up. Biopsy or surgical pathology results will be collected as the gold standard to assess the accuracy of Apo10 and TKTL1 in distinguishing malignant nodules from benign nodules. The sensitivity, specificity, positive predictive value, negative predictive value and area under the receiving operating characteristic curve will also be evaluated.
The study is approved by the medical ethics committee of Sun Yat-sen University (SL-G2022-005-02). The results of this study will be disseminated in peer-reviewed publications and presentations at international scientific meetings and will also be disseminated to the participants.
ChiCTR2300073823; Pre-results.
In population-based research, disease ascertainment algorithms can be as accurate as, and less costly than, performing supplementary clinical examinations on selected participants to confirm a diagnosis of a neurocognitive disorder (NCD), but they require cohort-specific validation. To optimise the use of the Canadian Longitudinal Study on Aging (CLSA) to understand the epidemiology and burden of NCDs, the CLSA Memory Study will validate an NCD ascertainment algorithm to identify CLSA participants with these disorders using routinely acquired study data.
Up to 600 CLSA participants with equal numbers of those likely to have no NCD, mild NCD or major NCD based on prior self-reported physician diagnosis of a memory problem or dementia, medication consumption (ie, cholinesterase inhibitors, memantine) and/or self-reported function will be recruited during the follow-up 3 CLSA evaluations (started August 2021). Participants will undergo an assessment by a study clinician who will also review an informant interview and make a preliminary determination of the presence or absence of an NCD. The clinical assessment and available CLSA data will be reviewed by a Central Review Panel who will make a final categorisation of participants as having (1) no NCD, (2) mild NCD or, (3) major NCD (according to fifth version of the Diagnostic and Statistical Manual of Mental Disorders criteria). These will be used as our gold standard diagnosis to determine if the NCD ascertainment algorithm accurately identifies CLSA participants with an NCD. Weighted Kappa statistics will be the primary measure of agreement. Sensitivity, specificity, the C-statistic and the phi coefficient will also be estimated.
Ethics approval has been received from the institutional research ethics boards for each CLSA Data Collection Site (Université de Sherbrooke, Hamilton Integrated Research Ethics Board, Dalhousie University, Nova Scotia Health Research Ethics Board, University of Manitoba, McGill University, McGill University Health Centre Research Institute, Memorial University of Newfoundland, University of Victoria, Élisabeth Bruyère Research Institute of Ottawa, University of British Columbia, Island Health (Formerly the Vancouver Island Health Authority, Simon Fraser University, Calgary Conjoint Health Research Ethics Board).
The results of this work will be disseminated to public health professionals, researchers, health professionals, administrators and policy-makers through journal publications, conference presentations, publicly available reports and presentations to stakeholder groups.
FreshRSS 