Jacobs Institute of Women's Health
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Expert Care of Adolescent Transgender and Gender-diverse Athletes
No full textAs a population, transgender and gender-diverse (TGD) adolescents face higher rates of discrimination than their cisgender peers, both in their personal lives and while seeking health care. Negative experiences with health care can be discouraging for minority populations and can result in poorer health maintenance and outcomes. As health care providers, it is imperative that we educate ourselves on providing culturally competent care for this community. This includes an understanding of gender identity, hormonal therapy, impact on athletics, musculoskeletal health, and surgical considerations in this population. In this article, we offer a perspective on providing expert care to TGD adolescent patients through the lens of sports medicine
Asian American, Native Hawaiian, And Pacific Islander Population Group Representation In The US Health Workforce
No full textAlthough the Asian American, Native Hawaiian, and Pacific Islander (AANHPI) population encompasses more than 50 ethnicities and 100 languages, it is often treated as a monolith in research and policy. Despite substantial heterogeneity, policy makers and researchers do not usually focus on AANHPI subgroups when discussing underrepresentation and health disparities. We provide insights on the representation of AANHPI populations by disaggregating the AANHPI racial category among the health workforce and examining the representation of AANHPI subgroups in health occupations. These data indicate that although the AANHPI population is well represented as a collective population, there are population groups that are underrepresented, including the other Southeast Asian and NHPI populations in general. There is also considerable underrepresentation of AANHPI populations in the behavioral health workforce. Policy and research addressing underrepresentation and gaps in health care, which usually do not focus on the Asian racial population groups, should disaggregate AANHPI population groups
Effectiveness of the smart program: Stepped-care HIV prevention for gay and bisexual adolescent boys
No full textOBJECTIVE: Adolescent men who have sex with men (AMSM) have high HIV incidence and low rates of HIV testing and pre-exposure prophylaxis (PrEP) use. There are few evidence-based HIV prevention programs that meet the unique needs of AMSM. The sequential, multiple assignment, randomized trial (SMART) program is a stepped care package of increasingly intensive eHealth interventions that were developed specifically for English- and Spanish-speaking AMSM. The sequence included universal sexuality education (SMART Sex Ed), an automated motivation and behavioral skills focused intervention (SMART Squad), and motivational interviewing via videoconferencing (SMART Sessions). METHOD: This SMART compared HIV testing, PrEP use, condomless anal sex (CAS), condom use intentions, and condom use self-efficacy outcomes for different embedded treatment sequences in the SMART program among a large sample of English- and Spanish-speaking AMSM (ages 13-18) in the U.S. states and territories (N = 1,306). RESULTS: In most of the embedded treatment sequences, there were significant improvements across 12 months for most of the outcomes, including CAS with casual partners, HIV testing, PrEP use, and condom use self-efficacy. There were largely no changes in CAS inclusive of serious partnerships and condom use intentions declined in some regimes. CONCLUSION: Findings from 12 months of follow-up provide evidence of the SMART program\u27s long-term effectiveness, with particular benefits for the important outcomes of HIV testing and PrEP use. Given the lack of effective interventions for this high HIV-incidence population coupled with the potential for high reach given the eHealth modality, funders should put in place the resources to enable rapid implementation. (PsycInfo Database Record (c) 2025 APA, all rights reserved)
Psychometric Evaluation of the Scleroderma Skin Questionnaire: A Novel Patient-Reported Outcome for Skin Disease in Patients With Systemic Sclerosis
No full textOBJECTIVE: We aimed to evaluate the psychometric properties of the Scleroderma Skin Questionnaire (SSQ), a novel patient-reported outcome (PRO) to assess systemic sclerosis (SSc)-related skin symptoms. METHODS: Participants were recruited from the SSc Collaborative National Quality and Efficacy Registry (CONQUER). Internal consistency was determined using Cronbach α and McDonald ω total (ω). The correlation of the SSQ was assessed with the modified Rodnan skin score (mRSS), physician global assessment (PGA), Scleroderma Health Assessment Questionnaire, 29-item Patient-Reported Outcomes Measurement Information System (PROMIS-29), and patient global assessment to assess criterion, convergent, and divergent validity. Correlations were also assessed between patients\u27 self-reported recall of skin changes over the past 6 months ( SSQ 6-Month ) and 6-month change in mRSS. RESULTS: The SSQ was administered to 799 adults (mean age 52.7; 83% female) enrolled in CONQUER. Cronbach α was 0.90 and ω was 0.92, indicating high internal consistency. The SSQ was moderately correlated with mRSS (r 0.56), with stronger correlations in diffuse (r 0.54) vs limited cutaneous subtypes (r 0.24; all P \u3c 0.05). The SSQ was also moderately-to-strongly correlated with PROMIS-29 physical function (r -0.50) and pain interference subscales (r 0.61), strongly with Health Assessment Questionnaire score (r 0.63) and severity subscale (r 0.62), and moderately with PGA SSc activity score (r 0.48; all P \u3c 0.05). SSQ 6-Month correlated weakly with the 6-month change in mRSS (r 0.26; P \u3c 0.05). CONCLUSION: SSQ demonstrated high reliability and moderate correlation with mRSS and legacy PROs. This study provides initial support for SSQ, but not SSQ 6-Month, to assess skin symptoms in patients with SSc
Progressive loss of cerebral structures in ALG11-related congenital disorder of glycosylation
No full textBACKGROUND: Congenital disorders of glycosylation (CDG) are a group of metabolic disorders related to dysfunctional glycoprotein and glycolipid biosynthesis. ALG11-related CDG is a rare member of this group, characterized by severe neurodevelopmental impairment, progressive microcephaly, sensorineural hearing loss, and epilepsy. The objective of this report is to provide an update on the phenotype and brain magnetic resonance imaging (MRI) at age seven years for a patient initially described in early infancy with fetal brain disruption sequence. METHODS: We provide an updated detailed clinical description of a seven-year-old male with ALG-11 CDG who underwent brain MRI at age seven years. RESULTS: Brain MRI at age seven years showed significant disease progression compared to the neonatal brain MRI. There was near complete loss of cerebral hemispheres, severe cerebellar atrophy, and decreased volume of the brainstem. The prior brain MRI (done at six weeks of age) had shown severe supratentorial volume loss but a relatively preserved cerebellum and brainstem at that time. CONCLUSIONS: Reports on the natural history of rare conditions are important to improve our understanding of these conditions. ALG11-CDG is associated with atrophy and eventual vanishing of supratentorial brain structures, and infratentorial brain structures later in the disease process. The involvement of a pediatric palliative care service is a valuable adjunct to assist with symptom management and family support for these complex progressive conditions
Take a Deep Breath: Operating Room Extubation After Bilateral Lung Transplantation on Venoarterial Extracorporeal Membrane Oxygenation
No full textEarly Continuous Electroencephalography, Clinical Parameters, and Short-Term Functional Outcomes in Pediatric Traumatic Brain Injury: Single-Center, Retrospective Cohort, 2010-2020
No full textOBJECTIVES: Traumatic brain injury (TBI) is a leading cause of pediatric morbidity and mortality. This study first investigates clinical characteristics and continuous electroencephalography (cEEG) parameters associated with short-term functional outcomes in pediatric patients following TBI. Second, we use these data for a hypothesis-generating model about outcomes. DESIGN: Retrospective cohort study. SETTING: PICU within a quaternary care hospital. PATIENTS: Pediatric patients (\u3c 18 yr) admitted from January 2010 to December 2020 with TBI who underwent cEEG within 72 hours of admission. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Patient demographics, clinical parameters, hospital course, and cEEG features were reviewed for associations with mortality and new disability (as defined by change in Functional Status Score between admission and discharge of ≥ 3 points). A statistical prediction model for patient outcome was created combining cEEG parameters with admission Glasgow Coma Scale (GCS) score and radiographic findings. We included 142 patients: 100 (70%) of whom had no new disability at hospital discharge; 42 (30%) had a new disability, including eight deaths. Univariate analysis showed favorable outcomes were associated with normal electroencephalogram background, reactivity, and sleep features ( p \u3c 0.001 for each). A model inclusive of these electroencephalogram parameters and GCS had high predictive ability for outcome with 0.94 with 95% CI (0.90-0.98). CONCLUSIONS: Specific cEEG findings observed acutely after injury, in combination with other clinical characteristics, may serve as biomarkers for short-term functional outcomes after pediatric TBI. Further validation of the model in another population is now required
Examining the Joint Effects of Epilepsy and Mental Health Conditions on Severe Maternal Morbidity
No full textMental health conditions and epilepsy frequently coexist and have independently been associated with severe maternal morbidity (SMM). Since little is known about the risks of these conditions when they occur together in pregnancy, we evaluated the associations of mental health conditions, epilepsy, and SMM. We conducted a population-based study of births in California between 2007 and 2018. Antenatal epilepsy and mental health conditions (defined as depression, anxiety, posttraumatic stress disorder, and other) were identified using billing codes. We categorized individuals into the following mutually exclusive exposure groups: no epilepsy or mental health conditions (referent), mental health conditions alone, epilepsy alone, or both epilepsy and mental health conditions. Our primary outcome was SMM, defined by the 20-indicator Centers for Disease Control and Prevention Index. We conducted multivariable logistic regression models adjusted for sociodemographic and clinical confounding factors. In a cohort of 5,275,994 births, SMM occurred more frequently in individuals with mental health conditions alone, epilepsy alone, and both mental health conditions and epilepsy (1.8%, 3.0%, 4.2%, respectively) compared with the referent group (0.8%). The odds of SMM were significantly increased for each exposure group: adjusted odds ratio (aOR) 2.13, 95% confidence interval (CI) 2.05-2.22 for mental health conditions; aOR 3.79, 95% CI 3.45-4.18 for epilepsy; and aOR 4.91, 95% CI 4.01-6.00 for both. Epilepsy and mental health conditions were independently associated with SMM, and individuals carrying both diagnoses had the highest odds of SMM. Our results highlight the need for awareness of SMM risks in this population
