Prevalence of ALS in all 50 states in the United States, data from the National ALS Registry, 2011-2018.

Objective: To summarize the prevalence of ALS in all 50 states and Washington, DC in the United States from 2011 to 2018 using data collected and analyzed by the National ALS Registry. In October 2010, the federal Agency for Toxic Substances and Disease Registry (ATSDR) launched the congressionally mandated Registry to determine the incidence and prevalence of ALS within the USA, characterize the demographics of persons with ALS, and identify the potential risk factors for the disease. This is the first analysis of state-level ALS prevalence estimates. Methods: ALS is not a notifiable disease in the USA, so the Registry uses a two-pronged approach to identify cases. The first approach uses existing national administrative databases (Medicare, Veterans Health Administration, and Veterans Benefits Administration). The second method uses a secure web portal to gather voluntary participant data and identify cases not included in the national administrative databases. Results: State-level age-adjusted average prevalence from 2011-2018 ranged from 2.6 per 100,000 persons (Hawaii) to 7.8 per 100,000 persons (Vermont), with an average of 4.4 per 100,000 persons in the US. New England and Midwest regions had higher prevalence rates than the national average. Conclusions: These findings summarize the prevalence of ALS for all 50 states from 2011 to 2018. This is a continuing effort to identify ALS cases on a national population basis. The establishment of the National ALS Registry has allowed for epidemiological trends of this disease and the assessment of potential risk factors that could cause ALS.

Social Infrastructure Availability and Suicide Rates among Working-Age Adults in the United States.

Social infrastructure (SI) may buffer against suicide risk by improving social cohesion, social support, and information and resource sharing. This study uses an ecological approach to examine the relationship between county-level SI availability and suicide rates among working-age adults (ages 25-64) in the United States, a population for whom suicide rates are high, rising, and geographically unequal. Mortality data are from the National Vital Statistics System for 2016-2019. SI data are from the National Neighborhood Data Archive for 2013-2015 and capture the availability of typically free SI (e.g. libraries, community centers) and commercial SI (e.g. coffee shops, diners, entertainment venues). Results from negative binomial models show that suicide rates are significantly lower in counties with more SI availability, net of county demographic, socioeconomic, and health care factors. This relationship held for both typically free and commercial SI. Policymakers should consider strengthening existing and developing new social infrastructure, particularly in counties with less educated populations, as part of a broader strategy to reduce suicide rates in the United States.

Trends in admissions for COVID-19 in the United States between April 2020 and December 2021 and cardiovascular events.

Introduction: Coronavirus disease 2019 (COVID-19) can lead to cardiovascular complications. We aimed to understand the trends in admission for COVID-19 and the incidence of various cardiovascular events. Material and methods: The 2020 and 2021 National Inpatient Sample (NIS) was studied for cases of COVID-19 between April 2020 and December 2021 in the United States. Linear-by-linear association helped us understand the trends of various events. Results: The number of cases of COVID-19 was highest in January 2021 (261,469 patients). The incidence of acute pulmonary embolism rose from 2.08% in April 2020 to 4.82% in November 2021, while deep vein thrombosis cases rose from 1.74% in April 2020 to 2.63% in December 2021. The incidence of cardiac arrest varied, with a maximum of 3.00% in August 2021. Similarly, acute ischemic stroke cases experienced their highest incidence in January 2021 (0.91%). The incidence of myocarditis was highest in April and May 2020 (0.42% each). Peak takotsubo cases were seen between October and December 2021. The highest overall all-cause mortality among COVID-19 cases was seen in April 2020 (16.74%). Conclusions: Throughout the 21 months of our analysis, various trends in COVID-19 cases and incidence of cardiac events were noticed. This could relate to the different variants of COVID-19, their direct and indirect impact on coagulation pathways and the myocardial tissues, and the protective roles of the vaccines.

Individual and regional differences in the effects of school racial segregation on Black students' health.

Background: School racial segregation in the US has risen steadily since the 1990s, propelled by Supreme Court decisions rolling back the legacy of Brown v. Board. Quasi-experimental research has shown this resegregation harms Black students' health. However, whether individual or family characteristics (e.g., higher family incomes) are protective against segregation's health harms-or whether segregation is more damaging in regions of the US with fewer public sector investments-remains unclear. We leverage the quasi-random timing of school districts being released from Brown-era integration plans to examine heterogeneity in the association between resegregation and Black students' health. Methods & findings: We took an instrumental variables approach, using the timing of integration order releases as an instrument for school segregation and analyzing a pre-specified list of theoretically-motivated modifiers in the Panel Study of Income Dynamics. In sensitivity analyses, we fit OLS models that directly adjusted for relevant covariates. Results suggest resegregation may have been particularly harmful in the South, where districts resegregated more quickly after order releases. We find little evidence that the effects of school segregation differed across family income, gender, or age. Conclusion: The end of court-ordered integration threatens the health of Black communities-especially in the US South. Modestly higher incomes do not appear protective against school segregation's harms. Research using larger samples and alternative measures of school segregation-e.g., between districts, instead of within districts-may further our understanding of segregation's health effects, especially in Northern states.

Underrepresented Applicants Post-USMLE Pass/Fail: A National Survey of Competitive Residency Directors.

Objective: To report the selection criteria important to residency program directors (PDs) and whether they believe pass/fail scoring will impact underrepresented in medicine (URM), International Medical Graduate (IMG), or osteopathic (DO) residency applicants after the United States Medical Licensing Examination (USMLE) changed Step 1 score reporting to pass/fail in January 2022. Methods: A Qualtrics survey was sent between August 2022 and January 2023 to 1141 US PDs from specialties with traditionally low residency selection rates: dermatology, ophthalmology, otolaryngology, orthopedic surgery, neurosurgery, interventional radiology, diagnostic radiology, radiation oncology, thoracic surgery, vascular surgery, plastic surgery, and urology. Contact information was obtained from AMA, FRIEDA, or program websites. Results: We received 433 responses (38%). When asked to anticipate the difficulty student groups will face matching into their specialty, PDs reported: for URM, 24.0% increased, 46.0% unchanged, and 30.0% decreased; for DO, 49.19% increased, 44.58% unchanged, and 6.23% decreased and for IMG, 56.35% increased, 39.72% unchanged, and 3.93% decreased. When asked to rank the most important selection factors, the top two responses were Step 2 CK score and away rotation participation at their site. Conclusion: PDs overwhelmingly believed residency selection difficulty would either increase or remain unchanged for DO (93.77%) and IMG (96.07%). In contrast, 76.0% reported difficulty for URM students would either decrease or remain unchanged. PDs ranked Step 2 CK score and away rotation participation as the most important selection factors. Despite PDs' belief that the Step 1 pass/fail scoring system may mitigate one barrier for URM students, emphasis on Step 2 CK and away rotations place additional barriers.

Comparison of the burden of digestive diseases between China and the United States from 1990 to 2019.

Introduction: China has experienced unprecedented transformations unseen in a century and is gradually progressing toward an emerging superpower. The epidemiological trends of digestive diseases in the United States (the US) have significant prescient effects on China. Methods: We extracted data on 18 digestive diseases from the Global Burden of Diseases 2019 Data Resource. Linear regression analysis conducted by the JoinPoint software assessed the average annual percentage change of the burden. We performed subgroup analyses based on sex and age group. Results: In 2019, there were 836.01 and 180.91 million new cases of digestive diseases in China and the US, causing 1558.01 and 339.54 thousand deaths. The age-standardized incidence rates of digestive diseases in China and the US were 58417.87/100,000 and 55018.65/100,000 respectively, resulting in age-standardized mortality rates of 81.52/100,000 and 60.88/100,000. The rates in China annually decreased by 2.149% for mortality and 2.611% for disability-adjusted life of year (DALY). The mortality and DALY rates of the US, respectively, had average annual percentage changes of -0.219 and -0.251. Enteric infections and cirrhosis and other chronic liver diseases accounted for the highest incidence and prevalence in both counties, respectively. The burden of multiple digestive diseases exhibited notable sex disparities. The middle-old persons had higher age-standardized prevalence rates. Conclusion: China bore a greater burden of digestive diseases, and the evolving patterns were more noticeable. Targeted interventions and urgent measures should be taken in both countries to address the specific burden of digestive diseases based on their different epidemic degree.

Associations between youth suicide rates and state school personnel suicide prevention training requirements.

Objective: As youth spend the majority of their time in school, school personnel suicide prevention training has gained support as an approach to mitigate rising youth suicide rates. This study examined associations between state school personnel suicide prevention training requirements (i.e., mandatory/non-mandatory and annual/not annual), year of legislation enactment (2013 or earlier/2014 or later), and changes in youth suicide rates by state from 2007-09 to 2016-18. Methods: School personnel suicide prevention training requirement data were collected through state-specific Department of Education websites while state-specific youth suicide rates were collected from the Center for Disease Control and Prevention's 2020 National Vital Statistics Report. Data were analyzed using a mixed effects linear regression model. Results: Training is mandated in 40/50 (80 %) states; 19/50 (38 %) require annual training. All states demonstrated increases in youth suicide rates from 2007-09 to 2016-18 (mean increase 3.9/100,000 [sd = 1.8]), but the change did not differ significantly by state requirements for mandatory (p = 0.44) or annual (p = 0.70) training, nor for year of enactment of legislation (p = 0.45). Conclusions: School personnel suicide prevention training requirements were not associated with changes in the youth suicide rate, though study results are limited in that data was not available on how successfully schools implemented the required trainings.

U.S. Army mortality surveillance in active duty soldiers, 2014-2019.

Mortality surveillance is an important activity for capturing information on a population's health. This retrospective surveillance analysis utilizes administrative data sources to describe active duty U.S. Army soldiers who died from 2014 to 2019, and calculate mortality rates, assess trends by category of death, and identify leading causes of death within subpopulations. During the surveillance period, 2,530 soldier deaths were reported. The highest crude mortality rates observed during the 6-year surveillance period were for deaths by suicide, followed by accidental (i.e., unintentional injury) deaths. The crude mortality rates for natural deaths decreased significantly over the 6-year period, by an average of 6% annually. The leading causes of death were suicide by gunshot wound, motor vehicle accidents, suicide by hanging, neoplasms, and cardiovascular events. Significant differences were observed in the leading causes of death in relation to demographic characteristics, which has important implications for the development of focused educational campaigns to improve health behaviors and safe driving habits. Current public health programs to prevent suicide should be evaluated, with new approaches for firearm safety considered.

Emerging Trends of Self-Harm Using Sodium Nitrite in an Online Suicide Community: Observational Study Using Natural Language Processing Analysis.

Background: There is growing concern around the use of sodium nitrite (SN) as an emerging means of suicide, particularly among younger people. Given the limited information on the topic from traditional public health surveillance sources, we studied posts made to an online suicide discussion forum, "Sanctioned Suicide," which is a primary source of information on the use and procurement of SN. Objective: This study aims to determine the trends in SN purchase and use, as obtained via data mining from subscriber posts on the forum. We also aim to determine the substances and topics commonly co-occurring with SN, as well as the geographical distribution of users and sources of SN. Methods: We collected all publicly available from the site's inception in March 2018 to October 2022. Using data-driven methods, including natural language processing and machine learning, we analyzed the trends in SN mentions over time, including the locations of SN consumers and the sources from which SN is procured. We developed a transformer-based source and location classifier to determine the geographical distribution of the sources of SN. Results: Posts pertaining to SN show a rise in popularity, and there were statistically significant correlations between real-life use of SN and suicidal intent when compared to data from the Centers for Disease Control and Prevention (CDC) Wide-Ranging Online Data for Epidemiologic Research (⍴=0.727; P<.001) and the National Poison Data System (⍴=0.866; P=.001). We observed frequent co-mentions of antiemetics, benzodiazepines, and acid regulators with SN. Our proposed machine learning-based source and location classifier can detect potential sources of SN with an accuracy of 72.92% and showed consumption in the United States and elsewhere. Conclusions: Vital information about SN and other emerging mechanisms of suicide can be obtained from online forums.

Unawareness of partner risk factors thwarts implementation of USPSTF recommendations for HIV pre-exposure prophylaxis in primary care.

The United States Preventive Services Task Force recommends pre-exposure chemoprophylaxis for persons at high risk of HIV exposure. The optimal screening strategy for at-risk individuals in primary care is not known. We evaluated the strategy of universal screening and discussed challenges to the implementation of this recommendation in primary care. Around 430 of 500 (86%) screening surveys were completed. Mutual monogamy was common but monogamous partners with recent negative HIV testing were uncommon. Likewise, among heterosexually active men and women, inconsistent condom use was common. Such individuals would be on guideline for HIV pre-exposure prophylaxis (PrEP) if their partner was at risk for HIV exposure. None of these potentially at-risk individuals met the criteria for PrEP, but 13% lacked knowledge of their partners' sexual and behavioral risk factors, preventing a clear decision on whether PrEP should be used. Our screen identified no individuals who clearly met the guideline criteria for HIV PrEP. We conclude that universal screening for HIV PrEP in primary care is unlikely to be an efficient strategy; targeted screening is likely more appropriate. Moreover, the 2019 guidelines for heterosexually active men and women rely on information that is often unknown to the patient, which makes these guidelines difficult to implement. Future guidelines should address these problems.

Association of cigarette smoking with changes in macroeconomic conditions.

This study uses data from the 1987-2022 Behavioral Risk Factor Surveillance System and state-level employment rates from the US Bureau of Labor Statistics to estimate the association between macroeconomic conditions and cigarette smoking. Our finding suggests a positive association, which constantly declined with time after the 2001 recession. We find that a one percentage point increase in the employment rate is associated with a 1.4% higher likelihood of smoking cigarettes in the overall sample but declined to 0.4% among cohorts surveyed from 2011 to 2022. We also find strong positive and heterogeneous associations among sociodemographic groups, except among Blacks and persons aged 65 years and older, among whom there is no association; however, the positive associations consistently decreased among these sociodemographic groups. Consequently, the strong positive association disappeared in several sociodemographic groups in cohorts surveyed over the last decade.

Enablers and barriers to primary health care access for Indigenous adolescents: a systematic review and meta-aggregation of studies across Australia, Canada, New Zealand, and USA.

BACKGROUND: Indigenous adolescents access primary health care services at lower rates, despite their greater health needs and experience of disadvantage. This systematic review identifies the enablers and barriers to primary health care access for Indigenous adolescents to inform service and policy improvements. METHODS: We systematically searched databases for publications reporting enablers or barriers to primary health care access for Indigenous adolescents from the perspective of adolescents, their parents and health care providers, and included studies focused on Indigenous adolescents aged 10-24 years from Australia, Canada, New Zealand, and United States of America. Results were analyzed against the WHO Global standards for quality health-care services for adolescents. An additional ninth standard was added which focused on cultural safety. RESULTS: A total of 41 studies were included. More barriers were identified than enablers, and against the WHO Global standards most enablers and barriers related to supply factors - providers' competencies, appropriate package of services, and cultural safety. Providers who built trust, respect, and relationships; appropriate package of service; and culturally safe environments and care were enablers to care reported by adolescents, and health care providers and parents. Embarrassment, shame, or fear; a lack of culturally appropriate services; and privacy and confidentiality were common barriers identified by both adolescent and health care providers and parents. Cultural safety was identified as a key issue among Indigenous adolescents. Enablers and barriers related to cultural safety included culturally appropriate services, culturally safe environment and care, traditional and cultural practices, cultural protocols, Indigenous health care providers, cultural training for health care providers, and colonization, intergenerational trauma, and racism. Nine recommendations were identified which aim to address the enablers and barriers associated with primary health care access for Indigenous adolescents. CONCLUSION: This review provides important evidence to inform how services, organizations and governments can create accessible primary health care services that specifically meet the needs of Indigenous adolescents. We identify nine recommendations for improving the accessibility of primary health care services for Indigenous adolescents.

African Americans Possessed High Prevalence of Comorbidities and Frequent Abdominal Symptoms, and Comprised A Disproportionate Share of Covid-19 Mortality among 9,873 Us- Hospitalized Patients Early in the Pandemic.

Background and aim: Identifying clinical characteristics and outcomes of different ethnicities in the US may inform treatment for hospitalized COVID-19 patients. Aim of this study is to identify predictors of mortality among US races/ethnicities. Design Setting and participants: We retrospectively analyzed de-identified data from 9,873 COVID-19 patients who were hospitalized at 15 US hospital centers in 11 states (March 2020-November 2020). Main Outcomes and Measures: The primary outcome was to identify predictors of mortality in hospitalized COVID-19 patients. Results: Among the 9,873 patients, there were 64.1% African Americans (AA), 19.8% Caucasians, 10.4% Hispanics, and 5.7% Asians, with 50.7% female. Males showed higher in-hospital mortality (20.9% vs. 15.3%, p=0.001). Non- survivors were significantly older (67 vs. 61 years) than survivors. Patients in New York had the highest in-hospital mortality (OR=3.54 (3.03 - 4.14)). AA patients possessed higher prevalence of comorbidities, had longer hospital stay, higher ICU admission rates, increased requirement for mechanical ventilation and higher in-hospital mortality compared to other races/ethnicities. Gastrointestinal symptoms (GI), particularly diarrhea, were more common among minority patients. Among GI symptoms and laboratory findings, abdominal pain (5.3%, p=0.03), elevated AST (n=2653, 50.2%, p=<0.001, OR=2.18), bilirubin (n=577, 12.9%, p=0.01) and low albumin levels (n=361, 19.1%, p=0.03) were associated with mortality. Multivariate analysis (adjusted for age, sex, race, geographic location) indicates that patients with asthma, COPD, cardiac disease, hypertension, diabetes mellitus, immunocompromised status, shortness of breath and cough possess higher odds of in-hospital mortality. Among laboratory parameters, patients with lymphocytopenia (OR2=2.50), lymphocytosis (OR2=1.41), and elevations of serum CRP (OR2=4.19), CPK (OR2=1.43), LDH (OR2=2.10), troponin (OR2=2.91), ferritin (OR2=1.88), AST (OR2=2.18), D-dimer (OR2=2.75) are more prone to death. Patients on glucocorticoids (OR2=1.49) and mechanical ventilation (OR2=9.78) have higher in-hospital mortality. Conclusion: These findings suggest that older age, male sex, AA race, and hospitalization in New York were associated with higher in-hospital mortality rates from COVID-19 in early pandemic stages. Other predictors of mortality included the presence of comorbidities, shortness of breath, cough elevated serum inflammatory markers, altered lymphocyte count, elevated AST, and low serum albumin. AA patients comprised a disproportionate share of COVID-19 death in the US during 2020 relative to other races/ethnicities.

Detecting Substance Use Disorder Using Social Media Data and the Dark Web: Time- and Knowledge-Aware Study.

Background: Opioid and substance misuse has become a widespread problem in the United States, leading to the "opioid crisis." The relationship between substance misuse and mental health has been extensively studied, with one possible relationship being that substance misuse causes poor mental health. However, the lack of evidence on the relationship has resulted in opioids being largely inaccessible through legal means. objectives: This study aims to analyze social media posts related to substance use and opioids being sold through cryptomarket listings. The study aims to use state-of-the-art deep learning models to generate sentiment and emotion from social media posts to understand users' perceptions of social media. The study also aims to investigate questions such as which synthetic opioids people are optimistic, neutral, or negative about; what kind of drugs induced fear and sorrow; what kind of drugs people love or are thankful about; which drugs people think negatively about; and which opioids cause little to no sentimental reaction. Methods: The study used the drug abuse ontology and state-of-the-art deep learning models, including knowledge-aware Bidirectional Encoder Representations From Transformers-based models, to generate sentiment and emotion from social media posts related to substance use and opioids being sold through cryptomarket listings. The study crawled cryptomarket data and extracted posts for fentanyl, fentanyl analogs, and other novel synthetic opioids. The study performed topic analysis associated with the generated sentiments and emotions to understand which topics correlate with people's responses to various drugs. Additionally, the study analyzed time-aware neural models built on these features while considering historical sentiment and emotional activity of posts related to a drug. Results: The study found that the most effective model performed well (statistically significant, with a macro-F1-score of 82.12 and recall of 83.58) in identifying substance use disorder. The study also found that there were varying levels of sentiment and emotion associated with different synthetic opioids, with some drugs eliciting more positive or negative responses than others. The study identified topics that correlated with people's responses to various drugs, such as pain relief, addiction, and withdrawal symptoms. Conclusions: The study provides insight into users' perceptions of synthetic opioids based on sentiment and emotion expressed in social media posts. The study's findings can be used to inform interventions and policies aimed at reducing substance misuse and addressing the opioid crisis. The study demonstrates the potential of deep learning models for analyzing social media data to gain insights into public health issues.

Impact of COVID-19 on the Health of Migrant Children in the United States: From Policy to Practice.

In this article, the authors provide an overview how the COVID-19 pandemic impacted the health and wellbeing of migrant children in conflict zones, in transit and post-settlement in the United States. In particular, the authors explore how policies implemented during the pandemic directly and indirectly affected migrant children and led to widening disparities in the aftermath of the pandemic. Given these circumstances, the authors provide recommendations for child health care providers caring for migrant children to mitigate and bolster resilience and health.

Public stigma against fentanyl overdose decedents in the United States: A conjoint vignette experiment.

The United States is facing a drug overdose crisis, and stigma against people who use drugs is a major roadblock to implementing solutions. Despite the public health importance of understanding and mitigating substance use stigma, prior research has focused mainly on perceptions of individuals with substance use disorders and a limited set of demographic traits. This leaves critical gaps in our understanding of stigma against fentanyl overdose decedents, who represent a much broader group, including people who use substances recreationally. This study develops a more robust understanding of these attitudes through an experimental vignette survey fielded to a national sample of American adults (n = 1432). Respondents were shown two fictional fentanyl overdose obituaries where a complex suite of decedent characteristics-including demographic traits and contexts of substance use-were randomly varied in a conjoint design. Respondents then endorsed one of the two decedents for each of several attitudinal outcomes, including blameworthiness and support for various interventions, and justified their choices in an open-ended format. Results indicate that the public assesses victims of fentanyl overdose meritocratically, making judgments based on personal history and life experience rather than traditional race, class, and gender status beliefs. While certainly a signal of progress on some fronts, this meritocratic lens conflicts with the public health model of addressing the overdose crisis and exposes the alarming persistence of explicit stigma against people who use drugs.

Food insecurity and epigenetic aging in middle-aged and older adults.

BACKGROUND: Food insecurity is recognized as a key social determinant of health for older adults. While food insecurity has been associated with morbidity and mortality, few studies have examined how it may contribute to accelerated biological aging. A potential mechanism by which food insecurity may contribute to aging is via epigenetic alterations. We examined the relationship between food insecurity and epigenetic aging, a novel measure of biological aging, in a nationally representative sample of middle-aged and older adults in the United States. METHODS: Cross-sectional analysis of adults 50 years of age and older from the 2016 Health and Retirement Study (HRS). Financial food insecurity was self-reported via two questions that ascertained having enough money for food or eating less than they felt they should. Epigenetic aging was measured via epigenetic clocks based on DNA methylation patterns that predict aging correlates of morbidity and mortality. Linear regressions were performed to test for differences in the epigenetic clocks, adjusting for biological, socioeconomic, and behavioral factors. RESULTS: The analysis consisted of 3875 adults with mean age of 68.5 years. A total of 8.1% reported food insecurity. Food insecurity was associated with several characteristics, including younger age, race/ethnic minority, lower income, total wealth, and educational attainment, higher BMI, and less physical activity. Food insecurity was associated with accelerated epigenetic aging compared to food security, as measured via second (Zhang, PhenoAge, GrimAge) and third (DunedinPoAm) generation epigenetic clocks. In particular, food insecurity remained significantly associated with accelerated Zhang (B = 0.09, SE = 0.03, p = 0.011) and GrimAge (B = 0.57, SE = 0.24, p = 0.022) in the fully adjusted models. CONCLUSIONS: Food insecurity is associated with accelerated epigenetic aging among middle-aged and older adults in the United States. Food insecurity may contribute to DNA methylation alterations across the genome and biological age acceleration. These findings add to a growing understanding of the influence of socioeconomic status on the epigenome and health in aging.

What are the barriers to health professionals' training on gender-affirming care from patients' and clinicians' perspectives?

OBJECTIVE: The aim of the study is to identify the barriers to gender-affirming health care education for providers from the perspectives of patients and providers. METHODS: A qualitative study based on grounded theory was conducted. Participants included transgender and gender diverse (TGD) patients seeking care, as well as resident physicians and attending physicians involved in care of patients seeking gender-affirming care. Semi-structured interviews were conducted over Zoom application and telephone calls. The study was conducted in Boston, Massachusetts, USA from November 2022 until February 2023. RESULTS: Nine attending physicians, eight resident physicians, and fifteen patients were interviewed. Attending physicians noted barriers to include lack of formal training in medical school and residency, lack of adequate opportunities for faculty development to appropriately train resident physicians, lack of opportunities for trainees to provide dedicated clinical care, lack of community engagement initiatives, and need for additional training centered on cultural sensitivity and inclusivity. Resident physicians noted a lack of robust and longitudinal didactic curriculum, deficiency in dedicated clinical time, and inadequacy in interprofessional training as major barriers to their training. They noted that they generally felt unprepared to care for TGD patients. Patients' barriers included difficulty building trust in medical providers' knowledge and skills, being addressed with incorrect names and pronouns, lacking a sense of belonging as a patient, as well as difficulty in arranging care due to lack of a centralized care system. CONCLUSION: Barriers to gender-affirming education include lack of adequate and formal training, lack of professional development opportunities, inadequacy in a multidisciplinary approach to treatment and education, and inadequacy in cultural and sensitivity training. Findings of this qualitative study based on interviews may help facilitate addressing such barriers through creation of routine lecture-based didactic opportunities for providers, investment in faculty development, creation of gender-affirming clinics, providing opportunities for trainees to provide longitudinal care to TGD patients, creation of interdisciplinary training modules, community engagement, and implementation of a multidisciplinary care model, which may help improve gender-affirming care in the long-run.

Lack of Diversity in Research on Females with Ehlers-Danlos Syndromes: Recruitment Protocol for a Quantitative Online Survey.

BACKGROUND: Ehlers-Danlos syndromes (EDS) are a group of connective tissue disorders caused by fragile lax collagen. Current EDS research lacks racial and ethnic diversity. The lack of diversity may be associated with the complexities of conducting a large international study on an underdiagnosed condition and a lack of EDS health care providers who diagnose and conduct research outside of the United States and Europe. Social media may be the key to recruiting a large diverse EDS sample. However, studies that have used social media to recruit have not been able to recruit diverse samples. OBJECTIVE: This study aims to discuss challenges, strategies, outcomes, and lessons learned from using social media to recruit a large sample of females with EDS. METHODS: Recruitment on social media for a cross-sectional survey examining dyspareunia (painful sexual intercourse) in females was examined. Inclusion criteria were (1) older than 18 years of age, (2) assigned female at birth, and (3) diagnosed with EDS. Recruitment took place on Facebook and Twitter (now X), from June 1 to June 25, 2019. RESULTS: A total of 1178 females with EDS were recruited from Facebook (n=1174) and X (n=4). On Facebook, participants were recruited via support groups. A total of 166 EDS support groups were identified, 104 permitted the principal investigator to join, 90 approved posting, and the survey was posted in 54 groups. Among them, 30 of the support groups posted in were globally focused and not tied to any specific country or region, 21 were for people in the United States, and 3 were for people outside of the United States. Recruitment materials were posted on X with the hashtag #EDS. A total of 1599 people accessed the survey and 1178 people were eligible and consented. The average age of participants was 38.6 (SD 11.7) years. Participants were predominantly White (n=1063, 93%) and non-Hispanic (n=1046, 92%). Participants were recruited from 29 countries, with 900 (79%) from the United States and 124 (11%) from Great Britain. CONCLUSIONS: Our recruitment method was successful at recruiting a large sample. The sample was predominantly White and from North America and Europe. More research needs to be conducted on how to recruit a diverse sample. Areas to investigate may include connecting with more support groups from outside the United States and Europe, researching which platforms are popular in different countries, and translating study materials into different languages. A larger obstacle to recruiting diverse samples may be the lack of health care providers that diagnose EDS outside the United States and Europe, making the pool of potential participants small. There needs to be more health care providers that diagnose and treat EDS in countries that are predominantly made up of people of color as well as research that specifically focuses on these populations. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR1-10.2196/53646.