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There is growing awareness of the unique etiology, biology, and clinical presentation of invasive lobular breast cancer (ILC), but additional research is needed to ensure translation of findings into management and treatment guidelines. We conducted a survey with input from breast cancer physicians, laboratory-based researchers, and patients to analyze the current understanding of ILC, and identify consensus research questions. 1774 participants from 66 countries respondents self-identified as clinicians (N = 413), researchers (N = 376), and breast cancer patients and advocates (N = 1120), with some belonging to more than one category. The majority of physicians reported being very/extremely (41%) to moderately (42%) confident in describing the differences between ILC and invasive breast cancer of no special type (NST). Knowledge of histology was seen as important (73%) and as affecting treatment decisions (51%), and most agreed that refining treatment guidelines would be valuable (76%). 85% of clinicians have never powered a clinical trial to allow subset analysis for histological subtypes, but the majority would consider it, and would participate in an ILC clinical trials consortium. The majority of laboratory researchers, reported being and very/extremely (48%) to moderately (29%) confident in describing differences between ILC and NST. They reported that ILCs are inadequately presented in large genomic data sets, and that ILC models are insufficient. The majority have adequate access to tissue or blood from patients with ILC. The majority of patients and advocates (52%) thought that their health care providers did not sufficiently explain the unique features of ILC. They identified improvement of ILC screening/early detection, and identification of better imaging tools as top research priorities. In contrast, both researchers and clinicians identified understanding of endocrine resistance and identifying novel drugs that can be tested in clinical trials as top research priority. In summary, we have gathered information from an international community of physicians, researchers, and patients/advocates that we expect will lay the foundation for a community-informed collaborative research agenda, with the goal of improving management and personalizing treatment for patients with ILC.
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BACKGROUND: Social and Environmental Determinants of Health (SEDH) provide us with a conceptual framework to gain insights into possible associations among different human behaviors and the corresponding health outcomes that take place often in and around complex built environments. Developing better built environments requires an understanding of those aspects of a community that are most likely to have a measurable impact on the target SEDH. Yet data on local characteristics at suitable spatial scales are often unavailable. We aim to address this issue by application of different data disaggregation methods. METHODS: We applied different approaches to data disaggregation to obtain small area estimates of key behavioral risk factors, as well as geospatial measures of green space access and walkability for each zip code of Allegheny County in southwestern Pennsylvania. RESULTS: Tables and maps of local characteristics revealed their overall spatial distribution along with disparities therein across the county. While the top ranked zip codes by behavioral estimates generally have higher than the county's median individual income, this does not lead them to have higher than its median green space access or walkability. CONCLUSION: We demonstrated the utility of data disaggregation for addressing complex questions involving community-specific behavioral attributes and built environments with precision and rigor, which is especially useful for a diverse population. Thus, different types of data, when comparable at a common local scale, can provide key integrative insights for researchers and policymakers.
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Características de Residência , Caminhada , Humanos , Caminhada/estatística & dados numéricos , Pennsylvania , Fatores de Risco , Ambiente Construído/estatística & dados numéricos , Planejamento Ambiental , Parques Recreativos/estatística & dados numéricos , Comportamentos Relacionados com a SaúdeRESUMO
OBJECTIVE: Neurotoxic chemicals are suggested in the etiology of amyotrophic lateral sclerosis (ALS). We examined the association of environmental and occupational risk factors including persistent organochlorine pesticides (OCPs) and ALS risk among cases from the Centers for Disease Control and Prevention National ALS Registry and age, sex, and county-matched controls. METHODS: Participants completed a risk factor survey and provided a blood sample for OCP measurement. ALS cases were confirmed through the Registry. Conditional logistic regression assessed associations between ALS and risk factors including OCP levels. RESULTS: 243 matched case-control pairs (61.7% male, mean [SD] age = 62.9 [10.1]) were included. Fifteen of the 29 OCPs examined had sufficient detectable levels for analysis. Modest correlations of self-reported years of exposure to residential pesticide mixtures and OCP serum levels were found (p<.001). Moreover, occupational exposure to lead including soldering and welding with lead/metal dust and use of lead paint/gasoline were significantly related to ALS risk (OR = 1.77, 95% CI: 1.11-2.83). Avocational gardening was a significant risk factor for ALS (OR = 1.57, 95% CI: 1.04-2.37). ALS risk increased for each 10 ng/g of α-Endosulfan (OR = 1.42, 95% CI: 1.14-1.77) and oxychlordane (OR = 1.24, 95% CI: 1.01-1.53). Heptachlor (detectable vs. nondetectable) was also associated with ALS risk (OR = 3.57, 95% CI: 1.50-8.52). CONCLUSION: This national case-control study revealed both survey and serum levels of OCPs as risk factors for ALS. Despite the United States banning many OCPs in the 1970s and 1980s, their use abroad and long half-lives continue to exert possible neurotoxic health effects.
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Esclerose Lateral Amiotrófica , Exposição Ambiental , Sistema de Registros , Humanos , Esclerose Lateral Amiotrófica/epidemiologia , Esclerose Lateral Amiotrófica/sangue , Esclerose Lateral Amiotrófica/induzido quimicamente , Masculino , Feminino , Pessoa de Meia-Idade , Estudos de Casos e Controles , Idoso , Fatores de Risco , Exposição Ambiental/efeitos adversos , Exposição Ambiental/estatística & dados numéricos , Exposição Ocupacional/efeitos adversos , Exposição Ocupacional/estatística & dados numéricos , Praguicidas/sangue , Praguicidas/efeitos adversos , Estados Unidos/epidemiologiaRESUMO
Variants of uncertain significance (VUS) are commonly identified in genetic testing. The rate at which a VUS is reclassified depends on multiple factors. However, as the amount of time it might take for a VUS to be reclassified varies, some patients with a VUS genetic testing result might have passed away before the VUS is reclassified. A VUS that is reclassified after the patient's death has clinical implications for the deceased patient's family members. The disclosure of reclassified VUS results for a deceased patient has complex legal and ethical implications. There are no established guidelines on how the reclassified VUS result for a deceased patient should be disclosed to at-risk relatives. An online survey was sent to members of the National Society of Genetic Counselors (NSGCs) to elicit practices and opinions regarding this issue. A total of 153 (4%) NSGC members completed the survey. Thirty-seven (24.2%) respondents reported having received a reclassified VUS for a deceased patient. Respondents were more likely to attempt disclosure if the variant was reclassified as pathogenic (93.5%) versus benign (76.5%), although the difference did not reach statistical significance (p = 0.06). Respondents more often reported the impact on family members (85.5%) than the decedent's right to privacy (15.0%) as extremely important when considering disclosure to family members. A legal mechanism to allow disclosure to relatives was supported by 70.6% of respondents and 97.4% felt the issue was important enough to pursue if such a process was in place. Only 9.8% of respondents supported a legal requirement of consent before disclosing to family members when a VUS is reclassified after the patient has passed away. Our results indicate that there is no consensus for how these results should be handled and a mechanism for disclosure of reclassified results to family members is supported.
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PRCIS: Most glaucoma patients with missed appointments report barriers to care and social risk factors. One third expressed interest in engaging with a patient navigator program. Most expressed interest in rescheduling. PURPOSE: The purpose of this study was to identify barriers to care among glaucoma patients with missed appointments and to assess their interest in a patient navigator program. MATERIAL AND METHODS: A cross-sectional study involving adult glaucoma patients from an academic eye center who missed their scheduled appointment between April 18 and July 25, 2022. Participants were surveyed about reasons for missed appointments, barriers to care, social risk factors, and interest in consulting with our patient navigator program. RESULTS: Of 172 patients with a missed glaucoma appointment, 73% (126/172) were contacted, and 40% (51/126) of those completed the survey. Participant age averaged 67±14 years, half were female (25/51, 49%), and most identified as Black (27/51, 53%) or White (21/51, 40%). Barriers to seeing a doctor including difficulty scheduling appointments (13/51, 26%), transportation (12/51, 24%), and cost or insurance barriers (8/51, 16%). Twenty-eight (55%) respondents reported at least one social risk factor. A positive association was found between having at least one risk factor and expressing interest in consulting our patient navigator (odds ratio=6.7, P =0.009). Overall, a third of respondents expressed interest in engaging with our patient navigator program (17/51, 33%). Two thirds of participants reported awareness of missed appointments (34/51, 67%), of whom 35% (12/34) reported having already rescheduled, 41% (14/34) expressed interest in rescheduling, and 24% (8/34) did not wish to return. CONCLUSIONS: Glaucoma patients with missed appointments report barriers to care and face social risk factors. Telephone outreach may help to re-engage them with care, and patients expressed interest in a patient navigator program to address social needs.
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Glaucoma , Cooperação do Paciente , Adulto , Humanos , Feminino , Pessoa de Meia-Idade , Idoso , Idoso de 80 Anos ou mais , Masculino , Estudos Transversais , Pressão Intraocular , Glaucoma/terapia , Acessibilidade aos Serviços de Saúde , Agendamento de ConsultasRESUMO
BACKGROUND: Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disorder with few risk factors identified and no known cure. Gene-environment interaction is hypothesized especially for sporadic ALS cases (90-95%) which are of unknown etiology. We aimed to investigate risk factors for ALS including exposure to ambient air toxics. METHODS: This population-based case-control study included 267 ALS cases (from the United States [U.S.] Centers for Disease Control and Prevention/Agency for Toxic Substances and Disease Registry National ALS Registry and Biorepository) and 267 age, sex, and county-matched controls identified via a commercial database. Exposure assessment for 34 ambient air toxicants was performed by assigning census tract-level U.S. Environmental Protection Agency (EPA) 2011 National Air Toxics Assessment (NATA) data to participants' residential ZIP codes. Conditional logistic regression was used to compute adjusted odds ratios (aORs) and 95% confidence intervals (CIs) for individual compounds, chemical classes, and overall exposure. Sensitivity analyses using both conditional logistic regression and Bayesian grouped weighted quartile sum (GWQS) models were performed to assess the integrity of findings. RESULTS: Using the 2011 NATA, the highest exposure quartile (Q4) compared to the lowest (Q1) of vinyl chloride (aOR = 6.00, 95% CI: 1.87-19.25), 2,4-dinitrotoluene (aOR = 5.45, 95% CI: 1.53-19.36), cyanide (aOR = 4.34, 95% CI: 1.52-12.43), cadmium (aOR = 3.30, 95% CI: 1.11-9.77), and carbon disulfide (aOR = 2.98, 95% CI: 1.00-8.91) was associated with increased odds of ALS. Residential air selenium showed an inverse association with ALS (second quartile [Q2] vs. Q1: aOR = 0.38, 95% CI: 0.18-0.79). Additionally, residential exposure to organic/chlorinated solvents (Q4 vs Q1: aOR = 2.62, 95% CI: 1.003-6.85) was associated with ALS. CONCLUSIONS: Our findings using the 2011 NATA linked by census tract to residential area provide evidence of increased ALS risk in cases compared to controls for 2,4-dinitrotoluene, vinyl chloride, cyanide, and the organic/chlorinated solvents class. This underscores the importance of ongoing surveillance of potential exposures for at-risk populations.
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Esclerose Lateral Amiotrófica , Dinitrobenzenos , Cloreto de Vinil , Humanos , Estados Unidos/epidemiologia , Estudos de Casos e Controles , Esclerose Lateral Amiotrófica/induzido quimicamente , Esclerose Lateral Amiotrófica/epidemiologia , Teorema de Bayes , Fatores de Risco , Solventes , CianetosRESUMO
Both SARS-CoV-2 and influenza virus can be transmitted by asymptomatic, presymptomatic, or symptomatic infected persons. We assessed effects on work attendance while ill before and during the COVID-19 pandemic in the United States by analyzing data collected prospectively from persons with acute respiratory illnesses enrolled in a multistate study during 2018-2022. Persons with previous hybrid work experience were significantly less likely to work onsite on the day before through the first 3 days of illness than those without that experience, an effect more pronounced during the COVID-19 pandemic than during prepandemic influenza seasons. Persons with influenza or COVID-19 were significantly less likely to work onsite than persons with other acute respiratory illnesses. Among persons with positive COVID-19 test results available by the second or third day of illness, few worked onsite. Hybrid and remote work policies might reduce workplace exposures and help reduce spread of respiratory viruses.
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COVID-19 , Influenza Humana , Estados Unidos/epidemiologia , Humanos , COVID-19/epidemiologia , SARS-CoV-2 , Influenza Humana/epidemiologia , Pandemias , Teste para COVID-19RESUMO
INTRODUCTION: The opioid epidemic has exacted a significant toll in rural areas, yet adoption of medications for opioid use disorder (MOUD) lags. The Rural Access to Medication Assisted Treatment in Pennsylvania (RAMP) Project facilitated adoption of MOUD in rural primary care clinics. The purpose of this study was to gain a better understanding of the barriers and facilitators operating at multiple levels to access or provide MOUD in rural Pennsylvania. METHODS: In total, the study conducted 35 semi-structured interviews with MOUD patients and MOUD providers participating in RAMP. Qualitative analysis incorporated both deductive and inductive approaches. The study team coded interviews and performed thematic analysis. Using a modified social-ecological framework, themes from the qualitative interviews are organized in five nested levels: individual, interpersonal, health care setting, community, and public policy. RESULTS: Patients and providers agreed on many barriers (e.g., lack of providers, lack of transportation, insufficient rapport and trust in patient-provider relationship, and cost, etc.); however, their interpretation of the barrier, or indicated solution, diverged in meaningful ways. Patients described their experiences in broad terms pointing to the social determinants of health, as they highlighted their lives outside of the therapeutic encounter in the clinic. Providers focused on their professional roles, responsibilities, and operations within the primary care setting. CONCLUSIONS: Providers may want to discuss barriers to treatment related to social determinants of health with patients, and pursue partnerships with organizations that seek to address those barriers. The findings from these interviews point to potential opportunities to enhance patient experience, increase access to and optimize processes for MOUD in rural areas, and reduce stigma against people with opioid use disorder (OUD) in the wider community.
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Epidemias , Transtornos Relacionados ao Uso de Opioides , Humanos , Transtornos Relacionados ao Uso de Opioides/terapia , Analgésicos Opioides/uso terapêutico , Instituições de Assistência Ambulatorial , Atenção Primária à SaúdeRESUMO
Background: Access to providers and programs that provide medications for opioid use disorder (MOUD) remains a systemic barrier for patients with opioid use disorder (OUD), particularly if they live in rural areas. The Rural Access to Medication Assisted Treatment (MAT) in Pennsylvania Project (Project RAMP) addressed this problem with a multisystem partnership that recruited, trained, and supported rural primary care providers to provide MOUD and implement an integrated care model (ICM) for patients with OUD. Given the demonstrated efficacy of Project RAMP, this article summarizes our recruitment strategies, including feasibility concerns for further expansion into other regions. Methods: The approach for recruiting implementation sites included two phases: partner outreach and site identification. Once recruited, the Systems Transformation Framework guided planning and implementation activities. Recruitment and implementation activities were assessed with implementation trackers and evaluated by providers via key informant interviews (KIIs). Results: Project RAMP recruited 26 primary care practices from 13 counties, including nine health systems and two private practice groups-exceeding the original target of 24 sites. There was a median of 49 days from first contact to project onboarding. A total of 108 primary care practices spanning 22 health systems declined participation. Findings from the KIIs highlighted the value of engaging PCPs by connecting to a shared vision (i.e., improving the quality of patient care) as well as addressing perceived participation barriers (e.g., offering concierge technical assistance to address lack of training or resources). Conclusion: Findings highlight how successful recruitment activities should leverage the support of health system leadership. Findings also emphasize that aiding recruitment and engagement efforts successfully addressed prescribers' perceived barriers to providing MOUD as well as facilitating better communication among administrators, PCPs, behavioral health professionals, care managers, and patients.Plain Language Summary: Opioid use disorder (OUD) is one of the leading causes of preventable illness and death. The standard of care for OUD is the provision of medications for opioid use disorder (MOUD) and the application of an integrative integrated care model (ICM) where behavioral health is blended with specialized medical services. Unfortunately, access to providers and healthcare facilities that provide MOUD or apply an ICM remains a systemic barrier for patients with OUD, particularly if they live in rural areas. Although there is no one-size-fits-all approach to implementing MOUD in primary care, findings from Project The Rural Access to Medication Assisted Treatment (MAT) in Pennsylvania Project (Project RAMP) highlight strategies that may improve future MOUD and ICM implementation efforts in similar rural contexts. Specifically, future efforts to increase MOUD capacity by recruiting new providers should be prepared to leverage health system leadership, address provider barriers via training and expert consultation, and facilitate connections to local behavioral health providers. This approach may be helpful to others recruiting health systems and primary care practices to implement new care models to use MOUD in treating patients with OUD.
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BACKGROUND: Falls occur annually in 25% of adults aged ≥65 years. Fall-related injuries are increasing, highlighting the need to identify modifiable risk factors. METHODS: Role of fatigability on prospective, recurrent, and injurious fall risk was examined in 1 740 men aged 77-101 years in the Osteoporotic Fractures in Men Study. The 10-item Pittsburgh Fatigability Scale measured perceived physical and mental fatigability (0-50/subscale) at Year 14 (2014-16); established cut-points identified men with more severe perceived physical (≥15, 55.7%), more severe mental (≥13, 23.7%) fatigability, or having both (22.8%). Prospective, recurrent (≥2), and injurious falls were captured by triannual questionnaires ≥1 year after fatigability assessment; risk of any fall was estimated with Poisson generalized estimating equations, and likelihood of recurrent/injurious falls with logistic regression. Models adjusted for age, health conditions, and other confounders. RESULTS: Men with more severe physical fatigability had a 20% (p = .03) increased fall risk compared with men with less physical fatigability, with increased odds of recurrent and injurious falls, 37% (p = .04) and 35% (p = .035), respectively. Men with both more severe physical and mental fatigability had a 24% increased risk of a prospective fall (p = .026), and 44% (p = .045) increased odds of recurrent falling compared with men with less severe physical and mental fatigability. Mental fatigability alone was not associated with fall risk. Additional adjustment for previous fall history attenuated associations. CONCLUSIONS: More severe fatigability may be an early indicator to identify men at high risk for falls. Our findings warrant replication in women, as they have higher rates of fatigability and prospective falls.
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Fraturas Ósseas , Masculino , Humanos , Feminino , Idoso , Estudos Prospectivos , Fatores de Risco , Exame Físico , Fadiga/epidemiologiaRESUMO
Persons with COVID-19-like illnesses are advised to stay home to reduce the spread of SARS-CoV-2. We assessed relationships between telework experience and COVID-19 illness with work attendance when ill. Adults experiencing fever, cough, or loss of taste or smell who sought healthcare or COVID-19 testing in the United States during March-November 2020 were enrolled. Adults with telework experience before illness were more likely to work at all (onsite or remotely) during illness (87.8%) than those with no telework experience (49.9%) (adjusted odds ratio 5.48, 95% CI 3.40-8.83). COVID-19 case-patients were less likely to work onsite (22.1%) than were persons with other acute respiratory illnesses (37.3%) (adjusted odds ratio 0.36, 95% CI 0.24-0.53). Among COVID-19 case-patients with telework experience, only 6.5% worked onsite during illness. Telework experience before illness gave mildly ill workers the option to work and improved compliance with public health recommendations to stay home during illness.
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COVID-19 , Adulto , Humanos , Estados Unidos/epidemiologia , COVID-19/epidemiologia , Teste para COVID-19 , SARS-CoV-2 , Pandemias , PresenteísmoRESUMO
Influenza vaccines can mitigate illness severity, including reduced risk of ICU admission and death, in people with breakthrough infection. Less is known about vaccine attenuation of mild/moderate influenza illness. We compared subjective severity scores in vaccinated and unvaccinated persons with medically attended illness and laboratory-confirmed influenza. Participants were prospectively recruited when presenting for care at five US sites over nine seasons. Participants aged ≥ 16 years completed the EQ-5D-5L visual analog scale (VAS) at enrollment. After controlling for potential confounders in a multivariable model, including age and general health status, VAS scores were significantly higher among 2,830 vaccinated participants compared with 3,459 unvaccinated participants, indicating vaccinated participants felt better at the time of presentation for care. No differences in VAS scores were observed by the type of vaccine received among persons aged ≥ 65 years. Our findings suggest vaccine-associated attenuation of milder influenza illness is possible.
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Vacinas contra Influenza , Influenza Humana , Hospitalização , Humanos , Vacinas contra Influenza/uso terapêutico , Influenza Humana/prevenção & controle , Pacientes Ambulatoriais , Estações do Ano , VacinaçãoRESUMO
OBJECTIVES: Limited information is available regarding provider- and patient panel-level factors associated with primary care provider (PCP) adoption/prescribing of medication for opioid use disorder (MOUD). METHODS: We assessed a retrospective cohort from 2015 to 2018 within the Pennsylvania Medicaid Program. Participants included PCPs who were Medicaid providers, with no history of MOUD provision, and who treated ≥10 Medicaid enrollees annually. We assessed initial MOUD adoption, defined as an index buprenorphine/buprenorphine-naloxone or oral/extended release naltrexone fill and sustained prescribing, defined as ≥1 MOUD prescription(s) for 3 consecutive quarters from the PCP. Independent variables included provider- and patient panel-level characteristics. RESULTS: We identified 113 rural and 782 urban PCPs who engaged in initial adoption and 36 rural and 288 urban PCPs who engaged in sustained prescribing. Rural/urban PCPs who issued increasingly larger numbers of antidepressant and antipsychotic medication prescriptions had greater odds of initial adoption and sustained prescribing (Pâ<â0.05) compared to those that did not prescribe these medications. Further, each additional patient out of 100 with opioid use disorder diagnosed before MOUD adoption increased the adjusted odds for initial adoption 2% to 4% (95% confidence interval [CI]â=â1.01-1.08) and sustained prescribing by 4% to 7% (95% CIâ=â1.01-1.08). New Medicaid providers in rural areas were 2.52 (95% CIâ=â1.04-6.11) and in urban areas were 2.66 (95% CIâ=â1.94, 3.64) more likely to engage in initial MOUD adoption compared to established PCPs. CONCLUSIONS: MOUD prescribing adoption was concentrated among PCPs prescribing mental health medications, caring for those with OUD, and new Medicaid providers. These results should be leveraged to test/implement interventions targeting MOUD adoption among PCPs.
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Transtornos Relacionados ao Uso de Opioides , Combinação Buprenorfina e Naloxona/uso terapêutico , Humanos , Medicaid , Naltrexona/uso terapêutico , Transtornos Relacionados ao Uso de Opioides/tratamento farmacológico , Estudos Retrospectivos , Estados UnidosRESUMO
OBJECTIVE: We aimed to develop an ecological momentary assessment (EMA) measure and sampling protocol to assess the near-term impact of experiences with social media use (SMU) that are associated with risk and protective factors for adolescent suicide. METHODS: To develop the EMA measure, we consulted literature reviews and conducted focus groups with the target population, adolescents at risk for suicide. Subsequently, we refined the measure through interviews with experts and cognitive interviews with adolescents, through which we explored adolescents' thought processes as they considered questions and response options. Data were recorded, transcribed, and analyzed using thematic analysis. RESULTS: The initial measure had 37 items assessing a range of harmful and beneficial aspects of SMU. Through expert and cognitive interviews, we refined the measure to 4 pathways assessing positive and negative experiences with SMU as well as positive and negative in-person interactions. Each pathway included a maximum of 11 items, as well as 2 items pertaining to SMU at nighttime to be assessed once daily. Acceptable targets the EMA measure's sampling protocol included a 10-day data collection window with text message-based prompts to complete the measure triggered 2-4 times daily. CONCLUSIONS: By assessing a range of risk and protective factors for youth suicide, while using methods to reduce participant burden, we established content validity for the EMA measure and acceptability for the sampling protocol among youth at high risk of suicide.HIGHLIGHTSDevelopment of an ecological momentary assessment measure and sampling protocolExploring brief momentary assessment of social media's impact on adolescent suicidal riskMulti-phase approach to establishing content validity and an acceptable sampling protocol.
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Mídias Sociais , Prevenção do Suicídio , Adolescente , Humanos , Avaliação Momentânea Ecológica , Ideação Suicida , Coleta de DadosRESUMO
BACKGROUND: Monitoring linguistic cues from adolescents' digital media use (DMU; ie, digital content transmitted on the web, such as through text messages or social media) that could denote suicidal risk offers a unique opportunity to protect adolescents vulnerable to suicide, the second leading cause of death among youth. Adolescents communicate through digital media in high volumes and frequently express emotionality. In fact, web-based disclosures of suicidality are more common than in-person disclosures. The use of automated methods of digital media monitoring triggered by a natural language processing algorithm offers the potential to detect suicidal risk from subtle linguistic units (eg, negatively valanced words, phrases, or emoticons known to be associated with suicidality) present within adolescents' digital media content and to use this information to respond to alerts of suicidal risk. Critical to the implementation of such an approach is the consideration of its acceptability in the clinical care of adolescents at high risk of suicide. OBJECTIVE: Through data collection among recently suicidal adolescents, parents, and clinicians, this study examines the current context of digital media monitoring for suicidal adolescents seeking clinical care to inform the need for automated monitoring and the factors that influence the acceptance of automated monitoring of suicidal adolescents' DMU within clinical care. METHODS: A total of 15 recently suicidal adolescents (aged 13-17 years), 12 parents, and 10 clinicians participated in focus groups, qualitative interviews, and a group discussion, respectively. Data were recorded, transcribed, and analyzed using thematic analysis. RESULTS: Participants described important challenges to the current strategies for monitoring the DMU of suicidal youth. They felt that automated monitoring would have advantages over current monitoring approaches, namely, by protecting web-based environments and aiding adolescent disclosure and support seeking about web-based suicidal risk communication, which may otherwise go unnoticed. However, they identified barriers that could impede implementation within clinical care, namely, adolescents' and parents' concerns about unintended consequences of automated monitoring, that is, the potential for loss of privacy or false alerts, and clinicians' concerns about liability to respond to alerts of suicidal risk. On the basis of the needs and preferences of adolescents, parents, and clinicians, a model for automated digital media monitoring is presented that aims to optimize acceptability within clinical care for suicidal youth. CONCLUSIONS: Automated digital media monitoring offers a promising means to augment detection and response to suicidal risk within the clinical care of suicidal youth when strategies that address the preferences of adolescents, parents, and clinicians are in place.
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Objective: In 2010, the United States Agency for Toxic Substances and Disease Registry (ATSDR) created the National ALS Registry (Registry) to examine the epidemiology of ALS and potential risk factors. We are currently recruiting population-based controls for an epidemiologic case-control study to examine ALS environmental risk factors using this Registry. To date, we have recruited 181 non-diseased, population-based controls for comparison to Registry cases (n = 280). Here we report our recruitment methods for controls and the associated response rates and costs. Methods: Eligible ALS cases had complete risk factor survey data, DNA analysis, and blood concentrations of persistent organic pollutants (POPs). Age, sex, and county-matched controls were identified from commercial/consumer databases using a targeted landline phone sample. Eligible controls were consented, surveyed, and mailed the POPs' blood analysis consent form. Once consented, phlebotomy was scheduled. Results: We mailed 3760 recruitment letters for 181 potential case-matches across 42 states between 9/2018 and 3/2020. After making phone contact and determining eligibility, 146 controls agreed to participate (response rate = 11.4%, cooperation rate = 22.8%). To date, 127 controls completed the survey and bloodwork. Though controls were matched to cases on age, sex, and county, unmatched characteristics (e.g. smoking) did not differ statistically. Interviewing and incentive costs are estimated at $211.85 per complete participation. Conclusions: Recruiting matched population-based controls for comparison to cases from the Registry for a study involving completion of a detailed survey and blood specimen provision is relatively feasible and cost effective. This recruitment method could be useful for case-control studies of other rare disorders.
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Esclerose Lateral Amiotrófica , Esclerose Lateral Amiotrófica/epidemiologia , Estudos de Casos e Controles , Bases de Dados Factuais , Humanos , Seleção de Pacientes , Sistema de Registros , Estados Unidos/epidemiologiaRESUMO
We developed measures of relational beliefs and expectations among single young gay and bisexual men (YGBM). Data come from an online cross-sectional study YGBM, which ran from July 2012 until January 2013. There were 50 items on relational beliefs and 25 items on relational expectations. We used random split samples and a priori analysis to group items together and applied principal axis factoring with varimax orthogonal rotation. We had a total N = 1582 in our analytical sample and identified six constructs of relational expectations (restrictions, negative break up, masculine and gender norms, optimism, cheating, immediacy) and two constructs of relational beliefs (sex beliefs, equality). Our findings highlight specific relational cognitions among YGBM and offer insight into the beliefs and expectations that may inform their relationships. Findings may be useful for health professionals to help YGBM reflect and understand the health implications of their beliefs and expectations about same-sex relationships to promote healthy decision-making as they seek future partners.
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Infecções por HIV , Minorias Sexuais e de Gênero , Estudos Transversais , Homossexualidade Masculina , Humanos , Masculino , Motivação , Parceiros SexuaisRESUMO
OBJECTIVES: Establish reliability, concurrent and convergent validity of the Pittsburgh Fatigability Scale (PFS) Mental subscale. DESIGN: Cross-sectional. SETTING: Older adults from two University of Pittsburgh registries, Baltimore Longitudinal Study of Aging (BLSA), and Long Life Family Study (LLFS). PARTICIPANTS: PFS Mental subscale validation was conducted using three cohorts: (1) Development Sample (N = 664, 59.1% women, age 74.8 ± 6.4 years, PFS Mental scores 10.3 ± 9.1), (2) Validation Sample I-BLSA (N = 430, 51.9% women, age 74.5 ± 8.2 years, PFS Mental scores 9.4 ± 7.9), and (3) Validation Sample II-LLFS (N = 1,917, 54.5% women, age 72.2 ± 9.3 years, PFS Mental scores 7.5 ± 8.2). MEASUREMENTS: Development Sample, Validation Sample I-BLSA, and Validation Sample II-LLFS participants self-administered the 10-item Pittsburgh Fatigability Scale. Validation Sample II-LLFS completed cognition measures (Trail Making Tests A and B), depressive symptomatology (Center for Epidemiologic Studies-Depression Scale, CES-D), and global fatigue from two CES-D items. RESULTS: In the Development Sample and Validation Sample I-BLSA, confirmatory factor analysis showed all 10 items loaded on two factors: social and physical activities (fit indices: SRMSR = 0.064, RMSEA = 0.095, CFI = 0.91). PFS Mental scores had strong internal consistency (Cronbach's α = 0.85) and good test-retest reliability (ICC = 0.78). Validation Sample II-LLFS PFS Mental scores demonstrated moderate concurrent and construct validity using Pearson (r) or Spearman (ρ) correlations against measures of cognition (Trail Making Tests A (r = 0.14) and B (r = 0.17) time), depressive symptoms (r = 0.31), and global fatigue (ρ = 0.21). Additionally, the PFS Mental subscale had strong convergent validity, discriminating according to established clinical or cognitive testing cut points, with differences in PFS Mental scores ranging from 3.9 to 7.6 points (all P < .001). All analyses were adjusted for family relatedness, field center, age, sex, and education. CONCLUSIONS: The validated PFS Mental subscale may be used in clinical and research settings as a sensitive, one-page self-administered tool of perceived mental fatigability in older adults.
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Autoavaliação Diagnóstica , Avaliação Geriátrica/métodos , Fadiga Mental/diagnóstico , Escalas de Graduação Psiquiátrica/normas , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Análise Fatorial , Feminino , Humanos , Estudos Longitudinais , Masculino , Psicometria , Reprodutibilidade dos Testes , Estatísticas não ParamétricasRESUMO
As Pennsylvania implements its managed long-term services and supports program, we explore how home- and community-based providers are preparing for and perceiving the transition through an online survey. We summarize responses and conduct chi-square analysis to measure differences between select provider groups. Despite high levels of uncertainty about program impact, over 84% of respondents plan to participate. We found that providers in the first implementation phase had more strategic and operational discussions with MCOs than the other two phases (p < .03). As program rollout continues, we anticipate changes in MCO-provider conversation frequency and topics based upon implementation zone.
Assuntos
Serviços de Saúde Comunitária/normas , Participação da Comunidade , Programas de Assistência Gerenciada/normas , Medicaid/normas , Garantia da Qualidade dos Cuidados de Saúde/organização & administração , Humanos , Pennsylvania , Planos Governamentais de Saúde/normas , Estados UnidosRESUMO
BACKGROUND AND OBJECTIVES: Fatigue is a common complaint and shares many risk factors with falls, yet the independent contribution of fatigue on fall risk is unclear. This study's primary aim was to assess the association between fatigue and prospective fall risk in 5642 men aged 64-100 enrolled in the Osteoporotic Fractures in Men Study (MrOS). The secondary aim was to examine the association between fatigue and recurrent fall risk. RESEARCH DESIGN AND METHODS: Fatigue was measured at baseline using the Medical Outcomes Study (short form) single-item question "During the past four weeks, how much of the time did you feel energetic?" Responses were then classified: higher fatigue = "none," "a little," or "some" of the time and lower fatigue = "a good bit," "most," or "all" of the time. We assessed falls using triannual questionnaires. Fall risk was examined prospectively over 3 years; recurrent falling was defined as at least 2 falls within the first year. Generalized estimating equations and multinomial logistic regression modeled prospective and recurrent fall risk as a function of baseline fatigue status, adjusted for demographics, medications, physical activity, and gait speed. RESULTS: Men with higher (26%) versus lower baseline fatigue were older (75.1 ± 6.2 vs 73.2 ± 5.7 years), 24% less active, and had worse physical function (gait speed = 1.09 ± 0.24 vs 1.24 ± 0.21 m/s), all p < .0001. Within 1 year, 25.4% (n = 1409) had fallen at least once, of which 47.4% (n = 668) were recurrent fallers. Men with higher versus lower fatigue had 25% increased fall risk (relative risk = 1.25, 95% CI: 1.14-1.36) over 3 years follow-up, but had 50% increased odds of recurrent falling (odds ratio = 1.50, 95% CI: 1.22-1.85) within the first year. DISCUSSION AND IMPLICATIONS: Fatigue is an important risk factor of falling independent of established risk factors. Reductions in fatigue (ie, increased energy) may lessen the burden of falls in older men and provide a novel avenue for fall risk intervention.