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Objective: Gulf War Illness (GWI) is a debilitating multisymptom condition that affects nearly a third of 1990-91 Gulf War (GW) veterans. Symptoms include pain, fatigue, gastrointestinal issues, and cognitive decrements. Our work has shown that GWI rates and potential causes for symptoms vary between men and women veterans. Studies have documented neuropsychological and neuroimaging findings mostly in men or combined sex datasets. Data are lacking for women veterans due to lack of power and repositories of women veteran samples. Methods: We characterized GW women veterans in terms of demographics, exposures, neuropsychological and neuroimaging outcomes from the newly collated Boston, Biorepository and Integrative Network (BBRAIN) for GWI. Results: BBRAIN women veterans are highly educated with an average age of 54 years. 81% met GWI criteria, 25% met criteria for current PTSD, 78% were white, and 81% served in the Army. Exposure to combined acetylcholinesterase inhibitors (AChEi) including skin pesticides, fogs/sprays and/or pyridostigmine bromide (PB) anti-nerve gas pill exposure resulted in slower processing speed on attentional tasks and a trend for executive impairment compared with non-exposed women. Brain imaging outcomes showed lower gray matter volumes and smaller caudate in exposed women. Conclusions: Although subtle and limited findings were present in this group of women veterans, it suggests that continued follow-up of GW women veterans is warranted. Future research should continue to evaluate differences between men and women in GW veteran samples. The BBRAIN women sub-repository is recruiting and these data are available to the research community for studies of women veterans.
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Neuroimagem , Síndrome do Golfo Pérsico , Veteranos , Humanos , Feminino , Pessoa de Meia-Idade , Síndrome do Golfo Pérsico/diagnóstico por imagem , Guerra do Golfo , Adulto , Boston/epidemiologia , Disfunção Cognitiva/diagnóstico por imagem , Disfunção Cognitiva/etiologia , Encéfalo/diagnóstico por imagem , Encéfalo/patologia , Testes Neuropsicológicos , Imageamento por Ressonância Magnética , Transtornos de Estresse Pós-Traumáticos/diagnóstico por imagem , IdosoRESUMO
PURPOSE: To characterize current lesbian, gay, bisexual, transgender, queer, and intersex (LGBTQI +) health-related undergraduate medical education (UME) curricular content and associated changes since a 2011 study and to determine the frequency and extent of institutional instruction in 17 LGBTQI + health-related topics, strategies for increasing LGBTQI + health-related content, and faculty development opportunities. METHOD: Deans of medical education (or equivalent) at 214 allopathic or osteopathic medical schools in Canada and the United States were invited to complete a 36-question, Web-based questionnaire between June 2021 and September 2022. The main outcome measured was reported hours of LGBTQI + health-related curricular content. RESULTS: Of 214 schools, 100 (46.7%) responded, of which 85 (85.0%) fully completed the questionnaire. Compared to 5 median hours dedicated to LGBTQI + health-related in a 2011 study, the 2022 median reported time was 11 h (interquartile range [IQR], 6-16 h, p < 0.0001). Two UME institutions (2.4%; 95% CI, 0.0%-5.8%) reported 0 h during the pre-clerkship phase; 21 institutions (24.7%; CI, 15.5%-33.9%) reported 0 h during the clerkship phase; and 1 institution (1.2%; CI, 0%-3.5%) reported 0 h across the curriculum. Median US allopathic clerkship hours were significantly different from US osteopathic clerkship hours (4 h [IQR, 1-6 h] versus 0 h [IQR, 0-0 h]; p = 0.01). Suggested strategies to increase content included more curricular material focusing on LGBTQI + health and health disparities at 55 schools (64.7%; CI, 54.6%-74.9%), more faculty willing and able to teach LGBTQI + -related content at 49 schools (57.7%; CI, 47.1%-68.2%), and more evidence-based research on LGBTQI + health and health disparities at 24 schools (28.2%; CI, 18.7%-37.8%). CONCLUSION: Compared to a 2011 study, the median reported time dedicated to LGBTQI + health-related topics in 2022 increased across US and Canadian UME institutions, but the breadth, efficacy, or quality of instruction continued to vary substantially. Despite the increased hours, this still falls short of the number of hours based on recommended LGBTQI + health competencies from the Association of American Medical Colleges. While most deans of medical education reported their institutions' coverage of LGBTQI + health as 'fair,' 'good,' or 'very good,' there continues to be a call from UME leadership to increase curricular content. This requires dedicated training for faculty and students.
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Currículo , Educação de Graduação em Medicina , Minorias Sexuais e de Gênero , Humanos , Canadá , Estados Unidos , Educação de Graduação em Medicina/normas , Inquéritos e Questionários , Masculino , FemininoRESUMO
BACKGROUND: Persons with Parkinson's disease (PD) who have received genetic test results are faced with the decision of whether, and how, to share that information with family. Studies in other specialties have shown high rates of disclosure motivated by a sense of responsibility. Rates of, and attitudes surrounding, disclosure have yet to be reported in this population. OBJECTIVES: To explore the disclosure practices and motivations of patients with PD regarding genetic test results, allowing insight to guide genetic counseling and navigation of test result discussions. METHODS: A cross-sectional online survey was distributed to adults with PD and previous genetic test results. Survey questions assessed demographics, genetic testing results and delivery, sharing behaviors, perceptions of PD, and motivations and barriers to family disclosure. RESULTS: Among respondents, 88.9% shared results with at least one family member, most often a child (73.5%) or sibling (65.4%). Seventy-four percent reported sharing results with someone outside of their family, most frequently a friend (88.4%). The most common motivation for disclosure was the perception that family members would want to know. Barriers to disclosure were lack of close relationships, understanding results, and perceived utility. CONCLUSIONS: Disclosure rates in this PD population were consistent with those in previously reported populations. Motivations were anchored in perceptions of utility and family desire for information, suggesting a need to adjust patient education to improve retention and to explore family dynamics and perceptions of results.
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Revelação , Família , Testes Genéticos , Doença de Parkinson , Humanos , Doença de Parkinson/genética , Doença de Parkinson/psicologia , Doença de Parkinson/diagnóstico , Masculino , Feminino , Pessoa de Meia-Idade , Estudos Transversais , Idoso , Família/psicologia , Adulto , Inquéritos e Questionários , Motivação , Aconselhamento Genético/psicologiaRESUMO
Lack of access to resources is a "fundamental cause" of poor HIV outcomes across the care cascade globally and may have the greatest impact on groups with co-existing marginalized identities. In a sample of people living with HIV (PWH) who inject drugs and were not on antiretroviral therapy (ART), we explored associations between access to resources and HIV severity. Fundamental Cause Theory (FCT) sees socioeconomic status/access to resources as a root cause of disease and emphasizes that individuals with limited resources have fewer means to mitigate health risks and implement protective behaviors, which ultimately generates disparities in health outcomes. Guided by the FCT, we hypothesized that resource depletion (primary aim) and lower income (secondary aim) were associated with increased HIV severity. Using baseline data from the Linking Infectious and Narcology Care (LINC-II) trial of ART-naive PWH who inject drugs in St. Petersburg, Russia (n = 225), we examined the association between "past year resource runout" (yes vs. no) and "low-income (< 300 USD a month)" and the outcome HIV severity (CD4 count, continuous). We fit two separate linear regression models adjusted for gender, age, time since HIV diagnosis, and prior ART use. Participants had a mean age of 37.5 years and were 60% male. Two thirds (66%) reported resource depletion, and 30% had income below 300 USD a month. Average CD4 count was 416 cells/mm3 (SD 285). No significant association was identified between either resource depletion or low-income and HIV severity (adjusted mean difference in CD4 count for resource depletion: - 4.16, 95% CI - 82.93, 74.62; adjusted mean difference in CD4 count for low-income: 68.13, 95% CI - 15.78, 152.04). Below-average income and running out of resources were common among PWH who inject drugs and are not on ART in St. Petersburg, Russia. Resource depletion and low-income were not significantly associated with HIV disease severity as captured by CD4 count. The nuanced relationship between socioeconomic status and HIV severity among people with HIV who inject drugs and not on ART merits further examination in a larger sample.
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Infecções por HIV , Classe Social , Abuso de Substâncias por Via Intravenosa , Humanos , Masculino , Feminino , Infecções por HIV/tratamento farmacológico , Infecções por HIV/epidemiologia , Federação Russa/epidemiologia , Abuso de Substâncias por Via Intravenosa/epidemiologia , Abuso de Substâncias por Via Intravenosa/complicações , Adulto , Contagem de Linfócito CD4 , Pessoa de Meia-Idade , Fatores Socioeconômicos , Acessibilidade aos Serviços de SaúdeRESUMO
BACKGROUND: Providing analgesia and sedation is an essential component of caring for many mechanically ventilated patients. The selection of analgesic and sedative medications during the COVID-19 pandemic, and the impact of these sedation practices on patient outcomes, remain incompletely characterized. RESEARCH QUESTION: What were the hospital patterns of analgesic and sedative use for patients with COVID-19 who received mechanical ventilation (MV), and what differences in clinical patient outcomes were observed across prevailing sedation practices? STUDY DESIGN AND METHODS: We conducted an observational cohort study of hospitalized adults who received MV for COVID-19 from February 2020 through April 2021 within the Society of Critical Care Medicine Discovery Viral Infection and Respiratory Illness Universal Study (VIRUS) COVID-19 Registry. To describe common sedation practices, we used hierarchical clustering to group hospitals based on the percentage of patients who received various analgesic and sedative medications. We then used multivariable regression models to evaluate the association between hospital analgesia and sedation cluster and duration of MV (with a placement of death [POD] approach to account for competing risks). RESULTS: We identified 1,313 adults across 35 hospitals admitted with COVID-19 who received MV. Two clusters of analgesia and sedation practices were identified. Cluster 1 hospitals generally administered opioids and propofol with occasional use of additional sedatives (eg, benzodiazepines, alpha-agonists, and ketamine); cluster 2 hospitals predominantly used opioids and benzodiazepines without other sedatives. As compared with patients in cluster 2, patients admitted to cluster 1 hospitals underwent a shorter adjusted median duration of MV with POD (ß-estimate, -5.9; 95% CI, -11.2 to -0.6; P = .03). INTERPRETATION: Patients who received MV for COVID-19 in hospitals that prioritized opioids and propofol for analgesia and sedation experienced shorter adjusted median duration of MV with POD as compared with patients who received MV in hospitals that primarily used opioids and benzodiazepines.
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As demand for genetic cancer risk assessment (GCRA) continues to increase, so does the sense of urgency to scale up efforts to triage patients, facilitate informed consent, and order genetic testing for cancer risk. The National Society of Genetic Counselors outlines the elements of informed consent that should be addressed in a GCRA session. While this practice resource aims to improve health equity, research on how well the elements of informed consent are implemented in practice is lacking. This retrospective and prospective mixed-methods study assessed how adequately the elements of informed consent are addressed during pre-test GCRA among 307 community clinicians (CC) and 129 cancer genetic counselors (GC), and barriers they face to addressing these elements. Results revealed that more than 90% of both cohorts consistently addressed components of at least 5 of the 10 elements of informed consent during a pre-test consultation. Technical aspects and accuracy of the test and utilization of test results were the most similarly addressed elements. Notably, GCs more often review the purpose of the test and who to test, general information about the gene(s), and economic considerations whereas CCs more often review alternatives to testing. Both cohorts reported psychosocial aspects of the informed consent process as the least adequately addressed element. Time constraints and patient-related concerns were most often cited by both cohorts as barriers to optimal facilitation of informed consent. Additional barriers reported by CCs included provider lack of awareness, experience, or education, and availability of resources and institutional support. Findings from this study may contribute to the development of alternative delivery models that incorporate supplementary educational tools to enhance patient understanding about the utility of genetic testing, while helping to mitigate the barrier of time constraints. Equally important is the use of this information to develop continuing education tools for providers.
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PURPOSE: We investigated effects of an adaptive telehealth coaching model on caregiver implementation of enhanced milieu teaching (EMT) with newly diagnosed toddlers with autism. METHOD: Three caregiver-child dyads participated in a multiple-baseline-across-behaviors, single-case design. Caregivers were taught EMT via telehealth using the teach-model-coach-review approach. EMT strategies were taught sequentially in four components corresponding to design tiers. Caregivers reported their needs for support and adaptation via weekly surveys. Primary outcomes were measures of caregiver's implementation, including (a) a fidelity checklist for wholistic use of EMT and (b) a percentage of correct use of a subset of key EMT strategies (e.g., matched turns, target talk, expansions, play actions, milieu episodes). Generalization and maintenance of caregiver strategy use in uncoached home activities were measured. The number of different words used by children was measured as a secondary, descriptive outcome. Social validity data were collected through ratings and interviews at the end of the study. RESULTS: There was a functional relation between the intervention and caregiver's implementation of EMT for all dyads. Caregiver's use of EMT strategies often generalized and maintained post-intervention. Child response to intervention was variable. Social validity data indicated that the model was beneficial to caregivers and children. CONCLUSIONS: An adaptive telehealth coaching model is effective for teaching caregivers of toddlers with autism to implement EMT and potentially helps to bridge the gap between diagnosis and comprehensive intervention. Further exploration of the relation between caregiver fidelity and dosage of active ingredients and child spoken language outcomes is needed. SUPPLEMENTAL MATERIAL: https://doi.org/10.23641/asha.25156223.
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Cuidadores , Telemedicina , Humanos , Cuidadores/educação , Cuidadores/psicologia , Masculino , Feminino , Pré-Escolar , Telemedicina/métodos , Lactente , Transtorno Autístico/terapia , Transtorno Autístico/psicologia , Resultado do TratamentoRESUMO
INTRODUCTION: The LINC-II randomized controlled trial in St. Petersburg, Russia for HIV-positive adults who inject drugs found that a multi-component intervention including initiation of antiretroviral therapy (ART) during admission to an addiction hospital, strengths-based case management and naltrexone significantly increased 12-month HIV viral suppression and ART retention. We conducted a comparative cost analysis to determine if the 12-month cost of the intervention is affordable within the current Russian health system. METHODS: We used LINC-II trial records and questionnaire responses to calculate the resources utilized by each participant in the study, including inpatient days, medications, laboratory tests, outpatient consultations, case manager interactions and opioid medication treatment. Quantities of resources utilized were multiplied by unit costs for each resource estimated from the service fee or price lists used by the study facilities for each specific service delivered. We report the average cost/study primary (viral suppression at 12 months) or secondary (retention in care at 12 months) outcome/participant in 2021 USD and compare costs between study arms. RESULTS: The trial enrolled 225 participants (111 intervention, 114 control) between September 2018 and December 2020. Viral suppression, non-suppression and missing suppression results were 28% and 14%, 49% and 37%, and 31% and 41% for the control and intervention arms, respectively. Retention results were 35% and 51% for the control and intervention arms, respectively. The average cost per study participant was $2714 in the control arm and $4342 in the intervention arm. The average cost per participant virally suppressed at 12 months was $3662 (control) and $6355 (intervention). The average cost per participant retained at 12 months was $4050 (control) and $5448 (intervention). For those retained, the cost difference between the arms was comprised of opioid treatment (35%), case management (31%), outpatient visits (18%) and additional days of ART (12%). CONCLUSIONS: The LINC-II intervention increased the cost of care for HIV-positive people who inject drugs in Russia significantly, but some components of the intervention, particularly earlier initiation of ART and case management, may be justifiable due to their success in reaching a challenging subgroup of the population in need. CLINICAL TRIAL NUMBER: NCT03290391.
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Analgésicos Opioides , Infecções por HIV , Adulto , Humanos , Análise Custo-Benefício , Analgésicos Opioides/uso terapêutico , Infecções por HIV/epidemiologia , Resultado do Tratamento , Administração de CasoRESUMO
PURPOSE: We explored factors predicting repeated or hazardous alcohol use among autistic and non-autistic U.S. youth ages 16 to 20 years. METHODS: Autistic (n = 94) and non-autistic (n = 92) youth completed an online survey. By design, half of each group reported past-year alcohol use. We compared drinking patterns for autistic and non-autistic youth, and within each group between abstinent or infrequent drinkers (0-1 drinking episodes in past year) versus those who drank 2 + times in past year. RESULTS: Autistic (vs. non-autistic) youth who drank did so less frequently and consumed fewer drinks per occasion. However, 15% of autistic youth who drank in the past year reported heavy episodic drinking and 9.3% screened positive for AUDIT-C hazardous drinking. For autistic youth only, a diagnosis of depression, bullying or exclusion histories were positively associated with drinking 2 + times in the past year. Autistic youth who put more effort into masking autistic traits were less likely to report drinking 2 + times in the past year. As compared to non-autistic youth, autistic participants were less likely to drink for social reasons, to conform, or to enhance experiences, but drank to cope at similar rates. CONCLUSION: Repeated and hazardous underage alcohol occur among autistic youth. Targeted prevention programs designed to address the specific drinking profiles of autistic youth are needed.
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BACKGROUND: Antiretroviral therapy (ART) coverage in Russia is low for people with HIV who inject drugs. HIV and addiction treatment in Russia are not well integrated. We aimed to evaluate an intervention to link people with HIV in addiction treatment to HIV care to achieve HIV viral load suppression. METHODS: LINC-II was a two-arm, open-label, randomised controlled trial at the City Addiction Hospital, Saint Petersburg, Russia. Eligible participants were aged 18 years or older, had a positive HIV status, were not currently on ART, were admitted to a narcology hospital, and had a current diagnosis of opioid use disorder. Participants were randomly assigned (1:1) to a multicomponent intervention (ie, rapid access to ART, naltrexone for opioid use disorder, and strengths-based case management) or standard of care. Blocked randomisation was stratified by history of ART use. The primary outcome was undetectable HIV viral load at 12 months, defined as less than 40 copies per mL. The trial was conducted and analysed according to the intention-to-treat principle. This trial is registered with ClinicalTrials.gov, NCT03290391. FINDINGS: Between Sept 19, 2018, and Dec 25, 2020, 953 individuals were screened for eligibility, 225 of whom were randomly assigned to the intervention (n=111) or standard of care (n=114). 136 (60%) participants were male and 89 (40%) were female. Participants in the intervention group had higher odds of HIV viral load suppression at 12 months compared with participants in the standard-of-care group (52 [47%] vs 26 [23%]; adjusted odds ratio 3·0 [95% CI 1·4-6·4]; p=0·0039). 21 adverse events (18 in the intervention group and three in the standard-of-care group)and 14 deaths (four in the intervention group and ten in the standard-of-care group) were reported in the study. INTERPRETATION: Given the effectiveness of the LINC-II intervention, scaling up this model could be one strategy to advance the UNAIDS goal of ending the HIV epidemic. FUNDING: National Institute on Drug Abuse and Providence/Boston Center for AIDS Research.
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Infecções por HIV , Transtornos Relacionados ao Uso de Opioides , Feminino , Masculino , Humanos , Administração de Caso , Naltrexona/uso terapêutico , Padrão de Cuidado , Carga Viral , Infecções por HIV/tratamento farmacológico , Infecções por HIV/epidemiologia , Federação Russa/epidemiologiaRESUMO
PURPOSE: The goal of this study was to identify promising implementation strategies that may increase teachers' and speech-language pathologists' (SLPs) adoption of augmentative and alternative communication (AAC) during routine classroom activities. METHOD: A grounded theory approach was used to collect and code online, semistructured interviews with six special education teachers and 14 SLPs who taught children aged 3-8 years who used AAC in inclusive and self-contained special education classrooms. Interviews were transcribed and coded verbatim using the constant comparative method. During a member checking process, six participants (n = 30%) confirmed their transcripts and commented on emerging themes. RESULTS: Participants shared a range of implementation strategies to increase AAC use during typical classroom activities, which were organized into seven themes: distribute modern AAC equipment, provide foundational training, share video examples, develop a systematic plan for adoption, deliver practice-based coaching, alter personnel obligations to provide protected time, and connect with professionals. A preliminary thematic map was created to link implementation barriers, strategies, and potential outcomes. CONCLUSIONS: AAC interventions effective in clinical research can be difficult to translate into routine practice unless investigators directly explore the needs of and demands on educational professionals. Future research should define implementation strategies clearly, solicit feedback from school-personnel, and match implementation strategies to the needs of local schools to support the uptake of AAC interventions in routine classroom settings. SUPPLEMENTAL MATERIAL: https://doi.org/10.23641/asha.23699757.
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Auxiliares de Comunicação para Pessoas com Deficiência , Transtornos da Comunicação , Patologia da Fala e Linguagem , Criança , Humanos , Pré-Escolar , Educação Inclusiva , Instituições Acadêmicas , Patologia da Fala e Linguagem/métodos , ComunicaçãoRESUMO
PURPOSE: This qualitative study explores classroom contextual factors influencing augmentative and alternative communication (AAC) use in early childhood classrooms. METHOD: Semistructured interviews were conducted with six special education teachers, 13 speech-language pathologists (SLPs), and one SLP assistant. Interviews were analyzed inductively in a systematic, multistep coding process using the constant comparative method with member checking. RESULTS: Seven themes were identified that affected AAC use in the classroom. Each theme was organized into three categories: individual-, classroom-, or school-level factors. Three themes were categorized as individual-level factors: Students' AAC systems are unavailable, professionals face challenges obtaining AAC knowledge and skills, and students' disruptive behaviors reduce access to AAC. One theme was a classroom-level factor: Classroom demands prevent AAC use. Finally, three themes were considered school-level factors: The culture of AAC influences AAC acceptance, team collaboration is essential for successful implementation, and teams need administrative support to deliver AAC interventions effectively. Conclusions: Teachers and SLPs felt that collaborative teams with AAC expertise, a school culture that endorsed AAC, and solid administrative support accelerated AAC adoption by normalizing AAC use in the classroom. Due to classroom demands, they struggled to use strategies such as aided AAC modeling and responsiveness during group instruction. Finally, participants emphasized that while it was necessary to customize AAC systems for each student, this individualization makes it harder for staff to learn each system and integrate them into classroom activities. SUPPLEMENTAL MATERIAL: https://doi.org/10.23641/asha.23681718.
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Auxiliares de Comunicação para Pessoas com Deficiência , Transtornos da Comunicação , Patologia da Fala e Linguagem , Humanos , Pré-Escolar , Transtornos da Comunicação/terapia , Estudantes , Pesquisa Qualitativa , Patologia da Fala e Linguagem/métodos , ComunicaçãoRESUMO
Combination therapy with estrogen and spironolactone may help some transgender women achieve desired results. We used two databases, OptumLabs® Data Warehouse (OLDW) and Veterans Health Administration (VHA), to examine trends in feminizing therapy. We included 3368 transgender patients from OLDW and 3527 from VHA, all of whom received estrogen, spironolactone, or both between 2006 and 2017. In OLDW, the proportion receiving combination therapy increased from 47% to 75% during this period. Similarly, in VHA, the proportion increased from 39% to 69% during this period. We conclude that the use of combination hormone therapy has become much more common over the past decade.
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Research suggests variants of uncertain significance (VUSs) present a variety of challenges for genetic counselors (GCs), nongenetics clinicians, and patients. Multigene cancer panels reveal more VUSs than single gene testing as a result of the increase in the number of genes being tested. This study surveyed 87 clinical cancer GCs involved with direct patient care and 19 laboratory GCs who provide guidance to clinicians regarding genetic test results about their attitudes on various options for the reporting of VUSs by laboratories for broad multigene cancer panels. Independent samples t-tests were utilized to compare the two groups. Based on a six-point Likert-type scale (1 = Strongly Disagree to 6 = Strongly Agree), clinical cancer GCs (M = 5.4; SD = 0.8) and laboratory GCs (M = 5.2; SD = 0.9) agreed overall that VUSs should be reported (p = 0.44; Cohen's d = 0.21). When asked about specific reporting options, both clinical cancer GCs (M = 1.9; SD = 1.1) and laboratory GCs (M = 2.1; SD = 1.4) disagreed that VUSs should be reported only for genes related to the indication for testing (p = 0.50; Cohen's d = 0.17). Overall, most GCs felt clinicians should not choose whether VUSs should be reported on genetic test results, with clinical cancer GCs (M = 1.9; SD = 1.3) feeling more strongly against it than laboratory GCs (M = 3.1; SD = 1.4; p = 0.002; Cohen's d = 0.88). Generally, GCs were more in favor of VUSs not being reported for population-based screening, with laboratory GCs (M = 4.7; SD = 0.8) agreeing more with that practice than clinical cancer GCs (M = 3.7; SD = 1.4; p = 0.001; Cohen's d = 0.80). Both clinical cancer GCs (M = 4.1; SD = 1.2) and laboratory GCs (M = 3.9; SD = 1.2) agreed additional guidelines on how to approach VUSs in clinical practice should be developed (p = 0.54; Cohen's d = 0.17). While most GCs supported the reporting of VUSs overall, our analyses suggest clinical cancer and laboratory GCs may have different attitudes toward specific VUS-related reporting options. Further research is needed to elucidate GC preferences to help inform best practices for the reporting of VUSs. The development of additional standardized guidelines on how to approach VUSs would further support clinical practice.
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Conselheiros , Neoplasias , Humanos , Laboratórios , Testes Genéticos/métodos , Atitude , Predisposição Genética para DoençaRESUMO
PURPOSE: To describe a pilot clinical case series of a modified ride-on car (MROC) intervention on mobility and alertness for young children with profound intellectual and multiple disabilities (PIMD). METHODS: Four young children with PIMD participated in 4 baseline observations and 5 intervention sessions (A-B design). Data collection occurred via video. Assessment of mobility and alertness duration used structured visual analysis. RESULTS: Three of the 4 children increased their independent mobility during the intervention sessions. One of the 4 children increased their active alertness during the intervention sessions. CONCLUSIONS: This pilot study demonstrates the initial feasibility of an MROC intervention in a clinical setting and outcome measures of mobility and alertness for children with PIMD. This provides support that this population should be considered for power mobility in early childhood. Further, this study used a novel, caregiver-implemented prompting protocol to teach children how to use the MROC.
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Pessoas com Deficiência , Deficiência Intelectual , Criança , Humanos , Pré-Escolar , Automóveis , Projetos Piloto , Pessoas com Deficiência/reabilitação , Atenção , Deficiência Intelectual/reabilitaçãoRESUMO
BACKGROUND: Women harboring mutations in breast cancer susceptibility genes are at increased lifetime risk of developing breast cancer and are faced with decisions about risk management, including whether to undergo high-risk screening or risk-reducing mastectomy (RRM). National guidelines recommend BRCA1 or BRCA2 mutation carriers consider RRM, but that carriers of moderate penetrance mutations (e.g., ATM or CHEK2) should be managed based on family history. We aimed to investigate determinants of decision for RRM, and hypothesized that mutation status, age, family history, partner status, and breast cancer would impact RRM decision making. METHODS: We performed a retrospective study assessing RRM decisions for 279 women. RESULTS: Women with BRCA and moderate penetrance gene mutations, a personal history of breast cancer, or a first degree relative with a history of breast cancer were more likely to undergo RRM. Breast cancer status and age showed an interaction effect such that women with breast cancer were less likely to undergo RRM with increasing age. CONCLUSION: Although national guidelines do not recommend RRM for moderate penetrance carriers, the rates of RRM for this population approached those for BRCA mutation carriers. Further insights are needed to better support RRM decision-making in this population.
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Neoplasias da Mama , Mastectomia , Neoplasias da Mama/diagnóstico , Neoplasias da Mama/genética , Neoplasias da Mama/cirurgia , Feminino , Genes BRCA1 , Genes BRCA2 , Humanos , Mutação , Penetrância , Estudos RetrospectivosRESUMO
Reproductive outcomes, such as preterm birth, miscarriage/stillbirth, and pre-eclampsia, are understudied in veterans, particularly among Gulf War veterans (GWVs). During deployment, women GWVs were exposed to toxicant and nontoxicant exposures that may be associated with adverse reproductive and developmental outcomes. The data come from a survey of 239 participants from northeastern and southern U.S. cohorts of women veterans. The questionnaire collected information about the service history, current and past general health, reproductive and family health, demographic information, and deployment exposures. Odds ratios were computed with 95% confidence intervals between exposures in theater and reproductive/children's health outcomes. GWVs experienced adverse reproductive outcomes: 25% had difficulty conceiving, and 31% had a pregnancy that ended in a miscarriage or stillbirth. Pregnancy complications were common among GWVs: 23% had a high-risk pregnancy, and 16% were diagnosed with pre-eclampsia. About a third of GWVs reported their children (38%) had a developmental disorder. Use of pesticide cream during deployment was associated with higher odds of all reproductive and developmental outcomes. The results demonstrate that GWVs experienced reproductive and children's health outcomes at potentially high rates, and exploratory analyses suggest pesticide exposure as associated with higher odds of adverse reproductive outcomes. Future longitudinal studies of women veterans should prioritize examining reproductive and children's health outcomes.
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Aborto Espontâneo , Praguicidas , Pré-Eclâmpsia , Nascimento Prematuro , Veteranos , Aborto Espontâneo/etiologia , Criança , Saúde da Criança , Feminino , Guerra do Golfo , Humanos , Recém-Nascido , Praguicidas/efeitos adversos , Gravidez , Resultado da Gravidez/epidemiologia , NatimortoRESUMO
This study evaluated the association between impulsivity and linkage to HIV care among Russians living with HIV recruited from an inpatient narcology hospital. Linking Infectious and Narcology Care (LINC) study participants who completed the Barratt Impulsiveness Scale (BIS) were included in these analyses. The primary independent variable was impulsivity score which was categorized as high impulsivity (BIS score > 71) vs. low impulsivity (BIS score < = 71). The primary outcome, linkage to care post recruitment, was defined as one or more HIV medical care visits at 12-month follow-up. Multiple logistic regression models were used to evaluate the association between high impulsivity and linkage to HIV care controlling for potential confounders. Participants (N = 227) were adults with a mean age of 34 years (SD = 5), and the majority were male (74%). We did not detect a significant association between impulsivity and linkage to HIV care after adjusting for respondents' age, gender, CD4 cell count, and depression score. We also found that substance use and hazardous drinking did not appear to confound the relationship. Although our study was unable to detect an association between impulsivity and linkage to HIV care, it may provide direction for future research exploring the associations between impulsivity and HIV care.
Assuntos
Infecções por HIV , Abuso de Substâncias por Via Intravenosa , Transtornos Relacionados ao Uso de Substâncias , Adulto , Masculino , Humanos , Feminino , Abuso de Substâncias por Via Intravenosa/diagnóstico , Infecções por HIV/epidemiologia , Infecções por HIV/terapia , Infecções por HIV/diagnóstico , Contagem de Linfócito CD4 , Comportamento Impulsivo , Transtornos Relacionados ao Uso de Substâncias/complicações , Transtornos Relacionados ao Uso de Substâncias/epidemiologia , Transtornos Relacionados ao Uso de Substâncias/terapia , Federação Russa/epidemiologiaRESUMO
Purpose: Transgender (TG) individuals are a historically understudied and underserved patient population. Although clinical guidelines for the care of TG patients exist, quality measures (QMs) specific to this population are lacking. The goal of this study was to obtain expert input on aspects of care for which quality measurement may be appropriate and describe feedback on candidate QMs. Methods: We convened a virtual technical expert panel in September 2020 with six experts in TG medical care. Experts participated in a guided discussion and provided numeric ratings on dimensions of measure suitability (importance, validity/reliability, feasibility, and ease of understanding) for eight candidate QMs spanning multiple care domains (e.g., laboratory testing/monitoring, cancer screening, and sexually transmitted infection screening). Results: Panelists acknowledged high importance and potential to improve care for some candidate QMs, particularly those related to laboratory testing before initiating and during hormone therapy. Numeric ratings of QMs varied but tended to be higher for testing-focused QMs. Experts raised concerns about overly prescriptive language for some QMs and emphasized the importance of considering more flexible specifications to accommodate diverse care scenarios-including care provided to nonbinary individuals-and align with the individualized nature of gender-affirming care. Conclusion: These preliminary findings support a potential role for QMs in improving quality of care for TG patients. Measures related to laboratory testing/monitoring for patients who receive or plan to initiate hormone therapy may be feasible and promising to explore in the future. Additional larger-scale efforts are needed to develop and test QMs for the care of TG individuals.