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OBJECTIVE: To use electronic health records (EHR) data at Boston Medical Center (BMC) to identify individual-level and spatial predictors of missed diagnosis, among those who meet diagnostic criteria for PCOS. METHODS: The BMC Clinical Data Warehouse was used to source patients who presented between October 1, 2003 and September 30, 2015 for any of the following: androgen blood tests, hirsutism, evaluation of menstrual regularity, pelvic ultrasound for any reason, or PCOS. Algorithm PCOS cases were identified as those with International Classification of disease (ICD) codes for irregular menstruation and either an ICD code for hirsutism, elevated testosterone lab, or polycystic ovarian morphology as identified using natural language processing on pelvic ultrasounds. Logistic regression models were used to estimate odds ratios (ORs) of missed PCOS diagnosis by age, race/ethnicity, education, primary language, body mass index (BMI), insurance type and social vulnerability index (SVI) score. RESULTS: In the 2003-2015 BMC-EHR PCOS at-risk cohort (n=23,786), there were 1,199 physician-diagnosed PCOS cases and 730 algorithm PCOS cases. In logistic regression models controlling for age, year, education, and SVI scores, Black/African American patients were more likely to have missed a PCOS diagnosis (OR = 1.69 [95% CI, 1.28, 2.24]) compared to non-Hispanic White patients, and relying on Medicaid or charity for insurance was associated with an increased odds of missed diagnosis when compared to private insurance (OR = 1.90 [95% CI, 1.47, 2.46], OR = 1.90 [95% CI, 1.41, 2.56], respectively). Higher SVI scores were associated with increased odds of missed diagnosis in univariate models. CONCLUSIONS: We observed individual-level and spatial disparities within the PCOS diagnosis. Further research should explore drivers of disparities for earlier intervention.
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Most research using digital technologies builds on existing methods for staff-administered evaluation, requiring a large investment of time, effort, and resources. Widespread use of personal mobile devices provides opportunities for continuous health monitoring without active participant engagement. Home-based sensors show promise in evaluating behavioral features in near real time. Digital technologies across these methodologies can detect precise measures of cognition, mood, sleep, gait, speech, motor activity, behavior patterns, and additional features relevant to health. As a neurodegenerative condition with insidious onset, Alzheimer disease and other dementias (AD/D) represent a key target for advances in monitoring disease symptoms. Studies to date evaluating the predictive power of digital measures use inconsistent approaches to characterize these measures. Comparison between different digital collection methods supports the use of passive collection methods in settings in which active participant engagement approaches are not feasible. Additional studies that analyze how digital measures across multiple data streams can together improve prediction of cognitive impairment and early-stage AD are needed. Given the long timeline of progression from normal to diagnosis, digital monitoring will more easily make extended longitudinal follow-up possible. Through the American Heart Association-funded Strategically Focused Research Network, the Boston University investigative team deployed a platform involving a wide range of technologies to address these gaps in research practice. Much more research is needed to thoroughly evaluate limitations of passive monitoring. Multidisciplinary collaborations are needed to establish legal and ethical frameworks for ensuring passive monitoring can be conducted at scale while protecting privacy and security, especially in vulnerable populations.
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Doença de Alzheimer , Disfunção Cognitiva , Humanos , Doença de Alzheimer/diagnóstico , Doença de Alzheimer/terapia , Cognição , BostonRESUMO
Introduction: Although the growth of digital tools for cognitive health assessment, there's a lack of known reference values and clinical implications for these digital methods. This study aims to establish reference values for digital neuropsychological measures obtained through the smartphone-based cognitive assessment application, Defense Automated Neurocognitive Assessment (DANA), and to identify clinical risk factors associated with these measures. Methods: The sample included 932 cognitively intact participants from the Framingham Heart Study, who completed at least one DANA task. Participants were stratified into subgroups based on sex and three age groups. Reference values were established for digital cognitive assessments within each age group, divided by sex, at the 2.5th, 25th, 50th, 75th, and 97.5th percentile thresholds. To validate these values, 57 cognitively intact participants from Boston University Alzheimer's Disease Research Center were included. Associations between 19 clinical risk factors and these digital neuropsychological measures were examined by a backward elimination strategy. Results: Age- and sex-specific reference values were generated for three DANA tasks. Participants below 60 had median response times for the Go-No-Go task of 796 ms (men) and 823 ms (women), with age-related increases in both sexes. Validation cohort results mostly aligned with these references. Different tasks showed unique clinical correlations. For instance, response time in the Code Substitution task correlated positively with total cholesterol and diabetes, but negatively with high-density lipoprotein and low-density lipoprotein cholesterol levels, and triglycerides. Discussion: This study established and validated reference values for digital neuropsychological measures of DANA in cognitively intact white participants, potentially improving their use in future clinical studies and practice.
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[This corrects the article DOI: 10.3389/fneur.2024.1340710.].
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BACKGROUND: Smartphone-based digital technology is increasingly being recognized as a cost-effective, scalable, and noninvasive method of collecting longitudinal cognitive and behavioral data. Accordingly, a state-of-the-art 3-year longitudinal project focused on collecting multimodal digital data for early detection of cognitive impairment was developed. METHODS AND RESULTS: A smartphone application collected 2 modalities of cognitive data, digital voice and screen-based behaviors, from the FHS (Framingham Heart Study) multigenerational Generation 2 (Gen 2) and Generation 3 (Gen 3) cohorts. To understand the feasibility of conducting a smartphone-based study, participants completed a series of questions about their smartphone and app use, as well as sensory and environmental factors that they encountered while completing the tasks on the app. Baseline data collected to date were from 537 participants (mean age=66.6 years, SD=7.0; 58.47% female). Across the younger participants from the Gen 3 cohort (n=455; mean age=60.8 years, SD=8.2; 59.12% female) and older participants from the Gen 2 cohort (n=82; mean age=74.2 years, SD=5.8; 54.88% female), an average of 76% participants agreed or strongly agreed that they felt confident about using the app, 77% on average agreed or strongly agreed that they were able to use the app on their own, and 81% on average rated the app as easy to use. CONCLUSIONS: Based on participant ratings, the study findings are promising. At baseline, the majority of participants are able to complete the app-related tasks, follow the instructions, and encounter minimal barriers to completing the tasks independently. These data provide evidence that designing and collecting smartphone application data in an unsupervised, remote, and naturalistic setting in a large, community-based population is feasible.
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Aplicativos Móveis , Smartphone , Humanos , Feminino , Idoso , Pessoa de Meia-Idade , Masculino , Estudos de Viabilidade , Inquéritos e Questionários , Estudos Longitudinais , CogniçãoRESUMO
Background: Physical activity has emerged as a modifiable behavioral factor to improve cognitive function. However, research on adherence to remote monitoring of physical activity in older adults is limited. Objective: This study aimed to assess adherence to remote monitoring of physical activity in older adults within a pilot cohort from objective user data, providing insights for the scalability of such monitoring approaches in larger, more comprehensive future studies. Methods: This study included 22 participants from the Boston University Alzheimer's Disease Research Center Clinical Core. These participants opted into wearing the Verisense watch as part of their everyday routine during 14-day intervals every 3 months. Eighteen continuous physical activity measures were assessed. Adherence was quantified daily and cumulatively across the follow-up period. The coefficient of variation was used as a key metric to assess data consistency across participants over multiple days. Day-to-day variability was estimated by calculating intraclass correlation coefficients using a 2-way random-effects model for the baseline, second, and third days. Results: Adherence to the study on a daily basis outperformed cumulative adherence levels. The median proportion of adherence days (wearing time surpassed 90% of the day) stood at 92.1%, with an IQR spanning from 86.9% to 98.4%. However, at the cumulative level, 32% (7/22) of participants in this study exhibited lower adherence, with the device worn on fewer than 4 days within the requested initial 14-day period. Five physical activity measures have high variability for some participants. Consistent activity data for 4 physical activity measures might be attainable with just a 3-day period of device use. Conclusions: This study revealed that while older adults generally showed high daily adherence to the wearable device, consistent usage across consecutive days proved difficult. These findings underline the effectiveness of wearables in monitoring physical activity in older populations and emphasize the ongoing necessity to simplify usage protocols and enhance user engagement to guarantee the collection of precise and comprehensive data.
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Exercício Físico , Cooperação do Paciente , Dispositivos Eletrônicos Vestíveis , Humanos , Projetos Piloto , Feminino , Masculino , Idoso , Cooperação do Paciente/estatística & dados numéricos , Idoso de 80 Anos ou mais , Estudos de CoortesRESUMO
BACKGROUND: Smartphone-based cognitive assessments have emerged as promising tools, bridging gaps in accessibility and reducing bias in Alzheimer disease and related dementia research. However, their congruence with traditional neuropsychological tests and usefulness in diverse cohorts remain underexplored. METHODS AND RESULTS: A total of 406 FHS (Framingham Heart Study) and 59 BHS (Bogalusa Heart Study) participants with traditional neuropsychological tests and digital assessments using the Defense Automated Neurocognitive Assessment (DANA) smartphone protocol were included. Regression models investigated associations between DANA task digital measures and a neuropsychological global cognitive Z score (Global Cognitive Score [GCS]), and neuropsychological domain-specific Z scores. FHS participants' mean age was 57 (SD, 9.75) years, and 44% (179) were men. BHS participants' mean age was 49 (4.4) years, and 28% (16) were men. Participants in both cohorts with the lowest neuropsychological performance (lowest quartile, GCS1) demonstrated lower DANA digital scores. In the FHS, GCS1 participants had slower average response times and decreased cognitive efficiency scores in all DANA tasks (P<0.05). In BHS, participants in GCS1 had slower average response times and decreased cognitive efficiency scores for DANA Code Substitution and Go/No-Go tasks, although this was not statistically significant. In both cohorts, GCS was significantly associated with DANA tasks, such that higher GCS correlated with faster average response times (P<0.05) and increased cognitive efficiency (all P<0.05) in the DANA Code Substitution task. CONCLUSIONS: Our findings demonstrate that smartphone-based cognitive assessments exhibit concurrent validity with a composite measure of traditional neuropsychological tests. This supports the potential of using smartphone-based assessments in cognitive screening across diverse populations and the scalability of digital assessments to community-dwelling individuals.
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Doença de Alzheimer , Disfunção Cognitiva , Masculino , Humanos , Pessoa de Meia-Idade , Feminino , Smartphone , Cognição/fisiologia , Testes Neuropsicológicos , Estudos Longitudinais , Disfunção Cognitiva/diagnósticoRESUMO
Background: Prior to a diagnosis of Alzheimer's disease, many individuals experience cognitive and behavioral fluctuations that are not detected during a single session of traditional neuropsychological assessment. Mobile applications now enable high-frequency cognitive data to be collected remotely, introducing new opportunities and challenges. Emerging evidence suggests cognitively impaired older adults are capable of completing mobile assessments frequently, but no study has observed whether completion rates vary by assessment frequency or adherence type. Methods: Thirty-three older adults were recruited from the Boston University Alzheimer's Disease Research Center (mean age = 73.5 years; 27.3% cognitively impaired; 57.6% female; 81.8% White, 18.2% Black). Participants remotely downloaded and completed the DANA Brain Vital application on their own mobile devices throughout the study. The study schedule included seventeen assessments to be completed over the course of a year. Specific periods during which assessments were expected to be completed were defined as subsegments, while segments consisted of multiple subsegments. The first segment included three subsegments to be completed within one week, the second segment included weekly subsegments and spanned three weeks, and the third and fourth segments included monthly subsegments spanning five and six months, respectively. Three distinct adherence types - subsegment adherence, segment adherence, and cumulative adherence - were examined to determine how completion rates varied depending on assessment frequency and adherence type. Results: Adherence type significantly impacted whether the completion rates declined. When utilizing subsegment adherence, the completion rate significantly declined (p = 0.05) during the fourth segment. However, when considering completion rates from the perspective of segment adherence, a decline in completion rate was not observed. Overall adherence rates increased as adherence parameters were broadened from subsegment adherence (60.6%) to segment adherence (78.8%), to cumulative adherence (90.9%). Conclusions: Older adults, including those with cognitive impairment, are able to complete remote cognitive assessments at a high-frequency, but may not necessarily adhere to prescribed schedules.
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Introduction: Advances in digital technologies for health research enable opportunities for digital phenotyping of individuals in research and clinical settings. Beyond providing opportunities for advanced data analytics with data science and machine learning approaches, digital technologies offer solutions to several of the existing barriers in research practice that have resulted in biased samples. Methods: A participant-driven, precision brain health monitoring digital platform has been introduced to two longitudinal cohort studies, the Boston University Alzheimer's Disease Research Center (BU ADRC) and the Bogalusa Heart Study (BHS). The platform was developed with prioritization of digital data in native format, multiple OS, validity of derived metrics, feasibility and usability. A platform including nine remote technologies and three staff-guided digital assessments has been introduced in the BU ADRC population, including a multimodal smartphone application also introduced to the BHS population. Participants select which technologies they would like to use and can manipulate their personal platform and schedule over time. Results: Participants from the BU ADRC are using an average of 5.9 technologies to date, providing strong evidence for the usability of numerous digital technologies in older adult populations. Broad phenotyping of both cohorts is ongoing, with the collection of data spanning cognitive testing, sleep, physical activity, speech, motor activity, cardiovascular health, mood, gait, balance, and more. Several challenges in digital phenotyping implementation in the BU ADRC and the BHS have arisen, and the protocol has been revised and optimized to minimize participant burden while sustaining participant contact and support. Discussion: The importance of digital data in its native format, near real-time data access, passive participant engagement, and availability of technologies across OS has been supported by the pattern of participant technology use and adherence across cohorts. The precision brain health monitoring platform will be iteratively adjusted and improved over time. The pragmatic study design enables multimodal digital phenotyping of distinct clinically characterized cohorts in both rural and urban U.S. settings.
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What is already known about this topic?: Numerous ecological and laboratory studies suggest face masks are an effective non-pharmaceutical intervention for reducing the spread of coronavirus disease 2019 (COVID-19), but cannot otherwise assess individual-level effects. What is added by this report?: Using a prospective cohort of individuals enrolled in a participatory, syndromic surveillance tool prior to the first case of COVID-19 in the United States, we present a novel longitudinal assessment of the effectiveness of face masks. What are the public health implications for public health practice?: Our analysis demonstrates an association between self-reported mask-wearing behavior and lower individual risk of syndromic COVID-19-like illness while adjusting for confounders at the individual level. Our results also highlight the dual utility of participatory syndromic surveillance systems as both disease trend monitors and tools that can aid in understanding the effectiveness of personal protective measures.