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Dementia, particularly Alzheimer's Disease (AD), has links to several modifiable risk factors, especially physical inactivity. When considering the relationship between physcial activity and dementia risk, cognitive benefits are generally attributed to aerobic exercise, with resistance exercise (RE) receiving less attention. This review aims to address this gap by evaluating the impact of RE on brain structures and cognitive deficits associated with AD. Drawing insights from randomized controlled trials (RCTs) utilizing structural neuroimaging, the specific influence of RE on AD-affected brain structures and their correlation with cognitive function are discussed. Preliminary findings suggest that RE induces structural brain changes in older adults that could reduce the risk of AD or mitigate AD progression. Importantly, the impacts of RE appear to follow a dose-response effect, reversing pathological structural changes and improving associated cognitive functions if performed at least twice per week for at least six months, with greatest effects in those already experiencing some element of cognitive decline. While more research is eagerly awaited, this review contributes insights into the potential benefits of RE for cognitive health in the context of AD-related changes in brain structure and function.
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Enfermedad de Alzheimer , Encéfalo , Entrenamiento de Fuerza , Humanos , Enfermedad de Alzheimer/patología , Entrenamiento de Fuerza/métodos , Encéfalo/patología , Encéfalo/diagnóstico por imagen , Anciano , Cognición/fisiología , Factores de RiesgoRESUMEN
Refugees and asylum seekers who identify as sexual minorities and/or who have been persecuted for same-sex acts maneuver through multiple oppressive systems at all stages of migration. Sexual minority refugees and asylum seekers (SM RAS) report experiencing a greater number of persecutory experiences and worse mental health symptoms than refugees and asylum seekers persecuted for reasons other than their sexual orientation (non-SM RAS). SM RAS are growing in numbers, report a need and desire for mental health treatment, and are often referred to therapy during the asylum process. However, little research has been conducted on the treatment needs of SM RAS in therapy or the strategies therapists use to address these needs. This study sought to identify these factors through qualitative interviews with providers at a specialty refugee mental health clinic (N = 11), who had experience treating both SM RAS and non-SM RAS. Interviews were transcribed and coded for themes of similarities and differences between SM RAS and non-SM RAS observed during treatment and factors that could be leveraged to reduce mental health disparities between SM RAS and non-SM RAS. Clinicians reported that compared to the non-SM RAS, SM RAS reported greater childhood trauma exposure, increased isolation, decreased support, identity-related shame, difficulty trusting others, and continued discrimination due to their SM identitiy. Suggested adaptations included reducing isolation, preparing for ongoing identity-based challenges, creating safe spaces to express SM identity, and a slower treatment pace. Providers reported benefits and drawbacks to centering the client's SM identity in treatment and encouraging community involvement for SM RAS, and noted additional training in cultural awareness would be beneficial. (PsycInfo Database Record (c) 2024 APA, all rights reserved).
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Refugiados , Minorías Sexuales y de Género , Humanos , Refugiados/psicología , Minorías Sexuales y de Género/psicología , Masculino , Femenino , Adulto , Investigación Cualitativa , Persona de Mediana Edad , Disparidades en el Estado de Salud , Disparidades en Atención de Salud , Servicios de Salud Mental , Trastornos Mentales/terapia , Trastornos Mentales/psicología , Trastornos Mentales/etnologíaRESUMEN
Objectives: Pediatric readiness varies widely among emergency departments (EDs). The presence of a pediatric emergency care coordinator (PECC) has been associated with improved pediatric readiness and decreased mortality, but adoption of PECCs has been limited. Our objective was to understand factors associated with PECC implementation in general EDs. Methods: We conducted semistructured qualitative interviews with a purposively sampled set of EDs with and without PECCs. Interviews were completed, transcribed, and coded until thematic saturation was reached. Themes were identified through a consensus process and mapped to the Consolidated Framework for Implementation Research (CFIR). Results: Twenty-four interviews were conducted and mapped to themes related to innovation, individuals and implementation process, outer setting (health system), and inner setting (hospital/ED). Addressing innovation, individuals, and implementation process, the primary theme was variability in how the PECC role was defined and who was responsible for implementing it. Regarding the outer setting, participants reported that limited system resources affected their ability to implement the PECC role. Key inner setting themes included concerns about limited visit volume, a lack of systems for measuring pediatric quality of care, and significant tension around change. Conclusions: Implementation of the PECC role appears to be limited by heterogeneous interpretations of the PECC, de-prioritization of pediatrics, and limited system resources. However, many participants described motivation to improve pediatric care and implement the PECC role in context of increasing pediatric visits; they offered strategies for future implementation efforts.
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Purpose: The study was designed to evaluate whether an educational intervention to train the health center (HC) staff to optimize care for sexual and gender minority (SGM) patients could improve documentation of sexual orientation and gender identity (SOGI) and increase preventive screenings. Methods: Twelve HCs were matched and randomized to either receive a tailored, multicomponent educational intervention or a 1-hour prerecorded webinar. Documentation of SGM status and clinical testing was measured through analysis of data that HCs report annually. Nonparametric statistics were used to assess associations between baseline HC characteristics and outcome measures. Results: The HCs were geographically, racially, and ethnically diverse. In all but one HC, <10% of the patients were identified as SGM. Intervention HCs underwent between 3 and 10 trainings, which were highly acceptable. In 2018, 9 of 12 HCs documented SO and 11 of 12 documented GI for at least 50% of their patients. Five of 6 intervention HCs increased SO documentation by 2020, compared to 3 of 6 control HCs (nonsignificant, NS). Five intervention HCs increased GI documentation, although generally by less than 10%, compared to 2 of the controls (NS). Intervention HCs tended to increase documentation of preventive services more than control HCs, but the changes were NS. Conclusions: An educational intervention designed to train the HC staff to provide culturally responsive services for SGM patients was found to be acceptable, with favorable, but nonsignificant changes. Further refinement of the intervention using a larger sample of HCs might demonstrate the effectiveness of this approach. Clinical trial registration #: NCT03554785.
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Identidad de Género , Minorías Sexuales y de Género , Humanos , Femenino , Masculino , Conducta SexualRESUMEN
INTRODUCTION: There are substantial inequities in oral health access and outcomes in the USA, including by income and racial and ethnic identity. People with adverse social determinants of health (aSDoH), such as housing or food insecurity, are also more likely to have unmet dental needs. Many patients with dental problems present to the emergency department (ED), where minimal dental care or referral is usually available. Nonetheless, the ED represents an important point of contact to facilitate screening and referral for unmet oral health needs and aSDoH, particularly for patients who may not otherwise have access to care. METHODS AND ANALYSIS: Mapping Oral health and Local Area Resources is a randomised controlled trial enrolling 2049 adult and paediatric ED patients with unmet oral health needs into one of three trial arms: (a) a standard handout of nearby dental and aSDoH resources; (b) a geographically matched listing of aSDoH resources and a search link for identification of geographically matched dental resources; or (c) geographically matched resources along with personalised care navigation. Follow-up at 3, 6, 9 and 12 months will evaluate oral health-related quality of life, linkage to resources and dental treatment, ED visits for dental problems and the association between linkage and neighbourhood resource density. ETHICS AND DISSEMINATION: All sites share a single human subjects review board protocol which has been fully approved by the Mass General Brigham Human Subjects Review Board. Informed consent will be obtained from all adults and adult caregivers, and assent will be obtained from age-appropriate child participants. Results will demonstrate the impact of addressing aSDoH on oral health access and the efficacy of various forms of resource navigation compared with enhanced standard care. Our findings will facilitate sustainable, scalable interventions to identify and address aSDoH in the ED to improve oral health and reduce oral health inequities. TRIAL REGISTRATION NUMBER: NCT05688982.
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Salud Bucal , Calidad de Vida , Adulto , Niño , Humanos , Cuidadores , Servicio de Urgencia en Hospital , Ensayos Clínicos Controlados Aleatorios como AsuntoRESUMEN
PURPOSE: Little is known about the uptake of germline genetic testing for patients with prostate cancer after 2018 guideline changes. This study characterizes genetic service referral patterns and predictors of referrals among patients with prostate cancer. METHODS: A retrospective cohort study using electronic health record data was conducted at an urban safety-net hospital. Individuals diagnosed with prostate cancer between January 2011 and March 2020 were eligible. The primary outcome was referral to genetic services after diagnosis. Using multivariable logistic regression, we identified patient characteristics associated with referrals. Interrupted time series analysis using a segmented Poisson regression examined whether guideline changes resulted in higher rates of referral after implementation. RESULTS: The cohort included 1,877 patients. Mean age was 65 years; 44% identified as Black, 32% White; and 17% Hispanic or Latino. The predominant insurance type was Medicaid (34%) followed by Medicare or private insurance (25% each). Most were diagnosed with local disease (65%), while 3% had regional and 9% had metastatic disease. Of the 1,877 patients, 163 (9%) had at least one referral to genetics. In multivariable models, higher age was negatively associated with referral (odds ratio [OR], 0.96; 95% CI, 0.94 to 0.98), while having regional (OR, 4.51; 95% CI, 2.44 to 8.34) or metastatic disease (OR, 4.64; 95% CI, 2.98 to 7.24) versus local only disease at diagnosis was significantly associated with referral. The time series analysis demonstrated a 138% rise in referrals 1 year after guideline implementation (relative risk, 3.992; 97.5% CI, 2.20 to 7.24; P < .001). CONCLUSION: Referrals to genetic services increased after guideline implementation. The strongest predictor of referral was clinical stage, suggesting opportunities to raise awareness about guideline eligibility for patients with advanced local or regional disease who may benefit from genetic services.
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INTRODUCTION: The 2018 National Comprehensive Cancer Network guidelines for prostate cancer genetic testing expanded access to genetic services. Few studies have examined how this change has affected provider practice outside of large cancer centers. METHODS: We conducted a qualitative study of multi-disciplinary health care providers treating patients with prostate cancer at a safety-net hospital. Participants completed an interview that addressed knowledge, practices, and contextual factors related to providing genetic services to patients with prostate cancer. A thematic analysis using both inductive and deductive coding was undertaken. RESULTS: Seventeen providers completed interviews. Challenges in identifying eligible patients for genetic testing stemmed from a lack of a) systems that facilitate routine patient identification, and b) readily available family history data for eligibility determination. Providers identified non-medical patient characteristics that influenced their referral process, including health literacy, language, cultural beliefs, patient distress, and cost. Providers who see patients at different times along the cancer care continuum viewed benefits of testing differently. CONCLUSION: The use of digital technologies that systematically identify those eligible for genetic testing referrals may mitigate some but not all challenges identified in this study. Further research should determine how individual provider perceptions influence referral practices and patient access to genetics both within and across cancer specialties.
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Pruebas Genéticas , Neoplasias de la Próstata , Masculino , Humanos , Neoplasias de la Próstata/diagnóstico , Neoplasias de la Próstata/genética , Neoplasias de la Próstata/terapia , Accesibilidad a los Servicios de SaludRESUMEN
Incorporating cultural sensitivity into healthcare settings is important to deliver high-quality and equitable care, particularly for marginalized communities who are non-White, non-English speaking, or immigrants. The Clinicians' Cultural Sensitivity Survey (CCSS) was developed as a patient-reported survey assessing clinicians' recognition of cultural factors affecting care quality for older Latino patients; however, this instrument has not been adapted for use in pediatric primary care. Our objective was to examine the validity and reliability of a modified CCSS that was adapted for use with parents of pediatric patients. A convenience sampling approach was used to identify eligible parents during well-child visits at an urban pediatric primary care clinic. Parents were administered the CCSS via electronic tablet in a private location. We first conducted exploratory factor analyses (EFAs) to explore the dimensionality of survey responses in the adapted CCSS, and then conducted a series of confirmatory factor analyses (CFAs) using maximum likelihood estimation based on the results of the EFAs. Exploratory and confirmatory factor analyses (N = 212 parent surveys) supported a three-factor structure assessing racial discrimination ([Formula: see text]=0.96), culturally-affirming practices ([Formula: see text]=0.86), and causal attribution of health problems ([Formula: see text]=0.85). In CFAs, the three-factor model also outperformed other potential factor structures in terms of fit statistics including scaled root mean square error approximation (0.098), Tucker-Lewis Index (0.936), Comparative Fit Index (0.950), and demonstrated adequate fit according to the standardized root mean square residual (0.061). Our findings support the internal consistency, reliability, and construct validity of the adapted CCSS for use in a pediatric population.
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Competencia Cultural , Atención a la Salud , Humanos , Niño , Reproducibilidad de los Resultados , Encuestas y Cuestionarios , Atención Primaria de Salud , Psicometría/métodosRESUMEN
Purpose: This study identified barriers and facilitators associated with providing culturally responsive care for sexual and gender minority (SGM) patients at federally qualified health centers (FQHCs) in the United States, from the perspective of clinical leadership. Methods: Between July and December 2018, 23 semistructured, in-depth qualitative interviews were held with clinical leaders representing six FQHCs residing in rural and urban settings. Stakeholders included Chief Executive Officer, Executive Director, Chief Medical Officer, Medical Director, Clinic Site Director, and Nurse Manager positions. Interview transcripts were analyzed using inductive thematic analysis. Results: Barriers included personnel factors related to lack of training and fear, competing priorities, and environments that focused on treating all patients similarly. Facilitators included established partnerships with external organizations, staff with prior SGM training and knowledge, and active initiatives in clinic settings targeting SGM care. Conclusions: Clinical leadership expressed strong support for evolving their FQHCs into organizations that provide culturally responsive care for their SGM patients. FQHC staff across all levels of clinical care would benefit from regularly occurring training sessions on culturally responsive care for SGM patients. To ensure sustainability, improve staff buy-in, and mitigate the impact of staff turnover, improving culturally competent care for SGM patients should be a shared goal and responsibility for leadership, medical providers, and administrative staff. CTN Registration: NCT03554785.
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Liderazgo , Minorías Sexuales y de Género , Humanos , Asistencia Sanitaria Culturalmente Competente , Identidad de Género , Personal de Salud , Estados UnidosRESUMEN
Objective: The emergency department (ED) is an opportune venue to screen for unmet social needs and connect patients with social services. This quality improvement study incorporates both qualitative and quantitative data to examine unmet social needs among ED patients and program implementation. Methods: From September 2020 to December 2021, an urban safety-net hospital adult ED implemented a social needs screening and referral program. Trained emergency staff screened eligible patients for 5 social needs (housing, food, transportation, utilities, employment), giving resource guides to patients who screened positive (THRIVE+). We collected screening data from the electronic health record, conducted semi-structured interviews with THRIVE+ patients and clinical staff, and directly observed discharge interactions. Results: Emergency staff screened 58.5% of eligible patients for social risk. Of the screened patients, 27.0% reported at least 1 unmet social need. Of those, 74.8% requested assistance. Screened patients reported housing insecurity (16.3%) as the most prevalent unmet social need followed by food insecurity (13.3%) and unemployment (8.7%). Among interviewed patients, 57.1% recalled being screened, but only 24.5% recalled receiving resource guides. Patients who received guides reported little success connecting with resources and supported universal guide dissemination. Staff expressed preference for warm handoff to social services. Of 13 observed discharge interactions, clinical staff only discussed guides with 2 patients, with no positive endorsement of the guides in any observed interactions. Conclusions: An ED social needs screening program can be moderately feasible and accepted. We identified housing as the most prevalent need. Significant gaps exist between screening and referral, with few patients receiving resources. Further training and workflow optimization are underway.
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Purpose: This study was conducted to characterize documentation of sexual orientation and gender identity (SOGI) and provision of screening and preventive services in a diverse sample of community health centers (CHCs). Methods: Twelve CHCs provided data submitted to the Health Resources and Services Administration (HRSA) in 2018 from their Uniform Data System (UDS) reports. Prevalence of SOGI documentation, screenings, and preventive services were calculated. Sociodemographic correlates of documentation were analyzed using Fisher's exact test and Wilcoxon rank sum/Mann-Whitney U test. Results: Patient data recording sexual orientation (SO) were missing in 2%-93% of UDS reports from the 12 CHCs, and gender identity (GI) data were missing from 0% to 96% of UDS reports. CHCs were most likely to report body mass index and tobacco screening and least likely to report hepatitis A or B vaccination, independent of SO or GI. Transgender females were less likely to have mammography documented than cisgender females. Transgender males were less likely to have anal Pap tests, be vaccinated for hepatitis B, or be referred for risky alcohol use compared to cisgender males. Patients who identified as "another gender" were less likely to be referred for risky alcohol use, undergo mammography or anal Pap testing, or receive hepatitis A vaccination than cisgender people. Individuals who did not disclose their GI were less likely to be vaccinated for hepatitis A or B than cisgender people. Conclusion: SOGI status was often not documented by a diverse array of CHCs. However, when SOGI status was documented, we saw evidence of disparities in preventive interventions and referrals, particularly for transgender patients. Clinical trial registration number: NCT03554785.
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Hepatitis A , Minorías Sexuales y de Género , Personas Transgénero , Femenino , Humanos , Masculino , Identidad de Género , Conducta Sexual , Centros Comunitarios de Salud , Servicios Preventivos de Salud , DocumentaciónRESUMEN
Background: In vitro maturation of immature testicular tissue (ITT) cryopreserved for fertility preservation is a promising fertility restoration strategy. Organotypic tissue culture proved successful in mice, leading to live births. In larger mammals, including humans, efficiently reproducing spermatogenesis ex vivo remains challenging. With advances in biomaterials technology, culture systems are becoming more complex to better mimic in vivo conditions. Along with improving culture media components, optimizing physical culture conditions (e.g., tissue perfusion, oxygen diffusion) also needs to be considered. Recent studies in mice showed that by using silicone-based hybrid culture systems, the efficiency of spermatogenesis can be improved. Such systems have not been reported for ITT of large mammals. Methods: Four different organotypic tissue culture systems were compared: static i.e., polytetrafluoroethylene membrane inserts (OT), agarose gel (AG) and agarose gel with polydimethylsiloxane chamber (AGPC), and dynamic i.e., microfluidic (MF). OT served as control. Porcine ITT fragments were cultured over a 30-day period using a single culture medium. Analyses were performed at days (d) 0, 5, 10, 20 and 30. Seminiferous tubule (ST) integrity, diameters, and tissue core integrity were evaluated on histology. Immunohistochemistry was used to identify germ cells (PGP9.5, VASA, SYCP3, CREM), somatic cells (SOX9, INSL3) and proliferating cells (Ki67), and to assess oxidative stress (MDA) and apoptosis (C-Caspase3). Testosterone was measured in supernatants using ELISA. Results: ITT fragments survived and grew in all systems. ST diameters, and Sertoli cell (SOX9) numbers increased, meiotic (SYCP3) and post-meiotic (CREM) germ cells were generated, and testosterone was secreted. When compared to control (OT), significantly larger STs (d10 through d30), better tissue core integrity (d5 through d20), higher numbers of undifferentiated spermatogonia (d30), meiotic and post-meiotic germ cells (SYCP3: d20 and 30, CREM: d20) were observed in the AGPC system. Apoptosis, lipid peroxidation (MDA), ST integrity, proliferating germ cell (Ki67/VASA) numbers, Leydig cell (INSL3) numbers and testosterone levels were not significantly different between systems. Conclusions: Using a modified culture system (AGPC), germ cell survival and the efficiency of porcine germ cell differentiation were moderately improved ex vivo. We assume that further optimization can be obtained with concomitant modifications in culture media components.
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BACKGROUND: In 2018 Translating Research Into Practice (TRIP), an evidence-based patient navigation intervention aimed at addressing breast cancer care disparities, was implemented across six Boston hospitals. This study assesses patient navigator team member perspectives regarding implementation barriers and facilitators one year post-study implementation. METHODS: We conducted in-depth qualitative interviews at the six sites participating in the pragmatic TRIP trial from December 2019 to March 2021. Navigation team members involved with breast cancer care navigation processes at each site were interviewed at least 12 months after intervention implementation. Interview questions were designed to address domains of the Consolidated Framework for Implementation Research (CFIR), focusing on barriers and facilitators to implementing the intervention that included 1) rigorous 11-step guidelines for navigation, 2) a shared patient registry and 3) a social risk screening and referral program. Analysis was structured using deductive codes representing domains and constructs within CFIR. RESULTS: Seventeen interviews were conducted with patient navigators, their supervisors, and designated clinical champions. Participants identified the following benefits provided by the TRIP intervention: 1) increased networking and connections for navigators across clinical sites (Cosmopolitanism), 2) formalization of the patient navigation process (Goals and Purpose, Access to Knowledge and Information, and Relative Advantage), and 3) flexibility within the TRIP intervention that allowed for diversity in implementation and use of TRIP components across sites (Adaptability). Barriers included those related to documentation requirements (Complexity) and the structured patient follow up guidelines that did not always align with the timeline of existing site navigation processes (Relative Priority). CONCLUSIONS: Our analysis provides data using real-world experience from an intervention trial in progress, identifying barriers and facilitators to implementing an evidence-based patient navigation intervention for breast cancer care. We identified core processes that facilitated the navigators' patient-focused tasks and role on the clinical team. Barriers encountered reflect limitations of navigator funding models and high caseload. TRIAL REGISTRATION: Clinical Trial Registration Number NCT03514433 , 5/2/2018.
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Neoplasias de la Mama , Navegación de Pacientes , Boston , Neoplasias de la Mama/terapia , Femenino , Humanos , Investigación Cualitativa , Derivación y ConsultaRESUMEN
BACKGROUND: Transgender and gender diverse (TGD) people experience significant barriers to accessing affirming health services. There is a paucity of literature examining how both community members and health care professionals (HCPs) understand potential causes and solutions for these barriers, particularly in non-urban settings. OBJECTIVE: We present the first systematic examination of perspectives from community members and HCPs regarding barriers to and solutions for promoting access to gender-affirming health care. DESIGN: Study activities were conducted through the Plan and Act for Transgender Health (PATH) Project, a health needs assessment of TGD people. Community members in the catchment area were recruited to participate in focus group discussions about access to gender-affirming health care and optimal health service delivery models in March-October 2019. HCPs were recruited to participate in focus group discussions or in-depth interviews about experiences working with TGD clients. Data were analyzed using an inductive grounded theory approach. SETTING: 25 rural counties in Massachusetts, New York, Connecticut, Vermont, and New Hampshire. PARTICIPANTS: Study participants included 61 adult TGD community members and 23 HCPs working in the catchment area. RESULTS: Both community members and HCPs spoke of the need for connectedness and linkages among disparate health system components for gender-affirming health care. Participants expressed this priority through calls for systems-level improvements within existing services (e.g., expanded data collection, expanded mental health services, inclusive and affirming health care environments, and TGD staff). They also expressed the need for expanded TGD community outreach and engagement (e.g., incorporation of a patient feedback process, TGD health navigators, and resource mapping). LIMITATIONS: Findings specifically reflect the perspectives of community members and HCPs in the rural New England area. Furthermore, the study sample was predominantly White non-Hispanic. CONCLUSION: Interventions to achieve accessible gender-affirming health care must address the diverse perspectives and needs of both community members and HCPs.
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Actitud del Personal de Salud , Identidad de Género , Instituciones de Salud/tendencias , Personal de Salud/psicología , Accesibilidad a los Servicios de Salud , Personas Transgénero/psicología , Adolescente , Adulto , Femenino , Humanos , Masculino , Persona de Mediana Edad , Investigación Cualitativa , Adulto JovenRESUMEN
Osteoarthritis (OA) is a degenerative disorder of the cartilage and is one of the leading causes of disability, particularly amongst the elderly, wherein patients with advanced-stage OA experience chronic pain and functional impairment of the limbs, thus resulting in a significantly reduced quality of life. The currently available treatments primarily revolve around symptom management, and is thus palliative rather than curative. The aim of the present review is to briefly discuss the limitations of some of the currently available treatments for patients with OA, and highlight the value of the potential use of stem cells in cellular therapy, which is widely regarded as the breakthrough that can address the present unmet medical needs for treatment of degenerative diseases, such as OA. The advantages of stem cell therapy, particularly mesenchymal stem cells, and the challenges involved are also discussed in this review.
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Purpose: There is a paucity of data regarding transgender and gender diverse (TGD) people who "detransition," or go back to living as their sex assigned at birth. This study examined reasons for past detransition among TGD people in the United States. Methods: A secondary analysis was performed on data from the U.S. Transgender Survey, a cross-sectional nonprobability survey of 27,715 TGD adults in the United States. Participants were asked if they had ever detransitioned and to report driving factors, through multiple-choice options and free-text responses. A mixed-methods approach was used to analyze the data, creating qualitative codes for free-text responses and applying summative content analysis. Results: A total of 17,151 (61.9%) participants reported that they had ever pursued gender affirmation, broadly defined. Of these, 2242 (13.1%) reported a history of detransition. Of those who had detransitioned, 82.5% reported at least one external driving factor. Frequently endorsed external factors included pressure from family and societal stigma. History of detransition was associated with male sex assigned at birth, nonbinary gender identity, bisexual sexual orientation, and having a family unsupportive of one's gender identity. A total of 15.9% of respondents reported at least one internal driving factor, including fluctuations in or uncertainty regarding gender identity. Conclusion: Among TGD adults with a reported history of detransition, the vast majority reported that their detransition was driven by external pressures. Clinicians should be aware of these external pressures, how they may be modified, and the possibility that patients may once again seek gender affirmation in the future.
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Identidad de Género , Personas Transgénero/psicología , Adulto , Estudios Transversales , Familia/psicología , Femenino , Humanos , Masculino , Investigación Cualitativa , Estigma Social , Encuestas y Cuestionarios , Personas Transgénero/estadística & datos numéricos , Estados UnidosRESUMEN
BACKGROUND: The purpose of this study was to assess pediatric hematology clinic staff's perspectives regarding barriers and facilitators in addressing unmet basic needs for children with sickle cell disease (SCD). METHODOLOGY: Six focus groups were held at four urban pediatric hematology clinics in the Northeastern region of the United States from November to December 2019. Discussion questions were developed to align with the integrated Promoting Action on Research Implementation in Health Services (i-PARIHS) implementation science framework, focusing on the domains of context and recipient and how clinics address adverse social determinants of health (SDoH) in their patient populations. A summative content analytical approach was taken to identify major themes in the data. RESULTS: We discerned the following themes: (1) families of children with SCD experience numerous unmet basic needs; (2) clinic staff believed they had a role to play in addressing these unmet basic needs; (3) staff felt their ability to address families' unmet basic needs depended upon caregivers' capacity to act on staff's recommendations; and (4) clinic staff's ability to address these needs was limited by organizational and systemic factors beyond their control. CONCLUSIONS: These findings have important implications for how best to address adverse SDoH for this vulnerable pediatric population so that urban-based pediatric hematology clinics can more equitably support families.
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Anemia de Células Falciformes , Determinantes Sociales de la Salud , Instituciones de Atención Ambulatoria , Anemia de Células Falciformes/terapia , Cuidadores , Niño , Humanos , Estados Unidos , Poblaciones VulnerablesRESUMEN
BACKGROUND: Electronic patient-reported outcome (ePRO) systems can improve health outcomes by detecting health issues or risk behaviors that may be missed when relying on provider elicitation. OBJECTIVE: This study aimed to implement an ePRO system that administers key health questionnaires in an urban community health center in Boston, Massachusetts. METHODS: An ePRO system that administers key health questionnaires was implemented in an urban community health center in Boston, Massachusetts. The system was integrated with the electronic health record so that medical providers could review and adjudicate patient responses in real-time during the course of the patient visit. This implementation project was accomplished through careful examination of clinical workflows and a graduated rollout process that was mindful of patient and clinical staff time and burden. Patients responded to questionnaires using a tablet at the beginning of their visit. RESULTS: Our program demonstrates that implementation of an ePRO system in a primary care setting is feasible, allowing for facilitation of patient-provider communication and care. Other community health centers can learn from our model in terms of applying technological innovation to streamline clinical processes and improve patient care. CONCLUSIONS: Our program demonstrates that implementation of an ePRO system in a primary care setting is feasible, allowing for facilitation of patient-provider communication and care. Other community health centers can learn from our model for application of technological innovation to streamline clinical processes and improve patient care.
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Centros Comunitarios de Salud/normas , Medición de Resultados Informados por el Paciente , Boston , Análisis de Datos , Humanos , Atención Primaria de Salud , Encuestas y CuestionariosRESUMEN
Evidence suggests priorities differ between patients in HIV care and their providers regarding topics most important to address in care. At five U.S. sites, we asked patients and providers to prioritize 25 potential topic areas to address during routine visits, and invited patients to discuss selection rationale. Patients (n = 206) and providers (n = 17) showed high discordance in rank order priorities (X2 (24, 223) = 71.12; p < 0.0001). Patients ranked social domains such as HIV stigma highly; a higher proportion of providers prioritized substance use domains. HIV stigma was a higher priority for patients in care fewer than 6 years (Fisher's exact p = 0.0062), nonwhite patients (Fisher's exact p = 0.0114), and younger patients (Fisher's exact p = 0.0281). Patients' priorities differed between men and women (X2 (24, 188) = 52.89; p < 0.0001), white race vs. other races (X2 (24, 206) = 48.32; p = 0.0023), and Latinos vs. non-Latinos (X2 (24, 206) = 48.65; p = 0.0021). Interviews (n = 79) revealed perceived impact of social context on health and health behaviors.
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Infecciones por VIH , Estigma Social , Femenino , Objetivos , Infecciones por VIH/tratamiento farmacológico , Conductas Relacionadas con la Salud , Hispánicos o Latinos , Humanos , Masculino , Relaciones Profesional-Paciente , Población BlancaRESUMEN
Low perceived social support (SS) negatively impacts health outcomes. We developed a measure of perceived SS for use in HIV care. We sought and categorized legacy items, selecting strongest items within categories. We elicited SS concepts from patients in English/Spanish, coded transcripts to match item pool content, and developed new items for salient unrepresented content. In focus groups, patients prioritized highly-matched items. We conducted cognitive interviews on high-priority items, and validity testing on final items against two legacy measures. From interviews (n = 32), we matched the following concepts: sense of belonging/inclusion; communication; emotional support; feeling accepted by others as a person; companionship; and practical support. We identified a new concept: support from friends/family in remaining healthy. Focus groups (n = 23) prioritized emotional support, communication, and support to remain healthy. Cognitive interviews (n = 30) found items were well-understood. The final 8-item measure performed well with patients (n = 708), with good construct validity. We used an Item Response Theory program to create a 3-item Short Form version of the measure, which captures 96% of patients indicating low social support. We developed the Multifactoral Assessment of Perceived Social Support (MAPSS) and Short Form (MAPSS-SF); brief, clinically relevant, sufficiently unidimensional measures of SS for use in HIV care.