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Patient reported outcomes in genital gender-affirming surgery: the time is now [Letter]

Agochukwu-Mmonu, Nnenaya; Radix, Asa; Zhao, Lee; Makarov, Danil; Bluebond-Langner, Rachel; Fendrick, A Mark; Castle, Elijah; Berry, Carolyn
Transgender and non-binary (TGNB) individuals often experience gender dysphoria. TGNB individuals with gender dysphoria may undergo genital gender-affirming surgery including vaginoplasty, phalloplasty, or metoidioplasty so that their genitourinary anatomy is congruent with their experienced gender. Given decreasing social stigma and increasing coverage from private and public payers, there has been a rapid increase in genital gender-affirming surgery in the past few years. As the incidence of genital gender-affirming surgery increases, a concurrent increase in the development and utilization of patient reported outcome measurement tools is critical. To date, there is no systematic way to assess and measure patients' perspectives on their surgeries nor is there a validated measure to capture patient reported outcomes for TGNB individuals undergoing genital gender-affirming surgery. Without a systematic way to assess and measure patients' perspectives on their care, there may be fragmentation of care. This fragmentation may result in challenges to ensure patients' goals are at the forefront of shared- decision making. As we aim to increase access to surgical care for TGNB individuals, it is important to ensure this care is patient-centered and high-quality. The development of patient-reported outcomes for patients undergoing genital gender-affirming surgery is the first step in ensuring high quality patient-centered care. Herein, we discuss the critical need for development of validated patient reported outcome measures for transgender and non-binary patients undergoing genital reconstruction. We also propose a model of patient-engaged patient reported outcome measure development.
PMCID:9038968
PMID: 35467181
ISSN: 2509-8020
CID: 5217282

Global DNA Methylation Profiles in Peripheral Blood of WTC-Exposed Community Members with Breast Cancer

Tuminello, Stephanie; Zhang, Yian; Yang, Lei; Durmus, Nedim; Snuderl, Matija; Heguy, Adriana; Zeleniuch-Jacquotte, Anne; Chen, Yu; Shao, Yongzhao; Reibman, Joan; Arslan, Alan A
Breast cancer represents the most common cancer diagnosis among World Trade Center (WTC)-exposed community members, residents, and cleanup workers enrolled in the WTC Environmental Health Center (WTC EHC). The primary aims of this study were (1) to compare blood DNA methylation profiles of WTC-exposed community members with breast cancer and WTC-unexposed pre-diagnostic breast cancer blood samples, and (2) to compare the DNA methylation differences among the WTC EHC breast cancer cases and WTC-exposed cancer-free controls. Gene pathway enrichment analyses were further conducted. There were significant differences in DNA methylation between WTC-exposed breast cancer cases and unexposed prediagnostic breast cancer cases. The top differentially methylated genes were Intraflagellar Transport 74 (IFT74), WD repeat-containing protein 90 (WDR90), and Oncomodulin (OCM), which are commonly upregulated in tumors. Probes associated with established tumor suppressor genes (ATM, BRCA1, PALB2, and TP53) were hypermethylated among WTC-exposed breast cancer cases compared to the unexposed group. When comparing WTC EHC breast cancer cases vs. cancer-free controls, there appeared to be global hypomethylation among WTC-exposed breast cancer cases compared to exposed controls. Functional pathway analysis revealed enrichment of several gene pathways in WTC-exposed breast cancer cases including endocytosis, proteoglycans in cancer, regulation of actin cytoskeleton, axon guidance, focal adhesion, calcium signaling, cGMP-PKG signaling, mTOR, Hippo, and oxytocin signaling. The results suggest potential epigenetic links between WTC exposure and breast cancer in local community members enrolled in the WTC EHC program.
PMCID:9105091
PMID: 35564499
ISSN: 1660-4601
CID: 5215082

Data Dashboards for Advancing Health and Equity: Proving Their Promise? [Editorial]

Thorpe, Lorna E; Gourevitch, Marc N
PMID: 35446603
ISSN: 1541-0048
CID: 5218472

Training in Neurology: Objective Structured Clinical Examination Case to Teach and Model Feedback Skills in Neurology Residency

LaRocque, Joshua J; Grossman, Scott; Kurzweil, Arielle M; Lewis, Ariane; Zabar, Sondra; Balcer, Laura; Galetta, Steven L; Zhang, Cen
We describe an educational intervention for neurology residents aimed at developing feedback skills. An objective structured clinical examination case was designed to simulate the provision of feedback to a medical student. After the simulated case session, residents received structured, individualized feedback on their performance and then participated in a group discussion about feedback methods. Survey data were collected from the standardized medical student regarding residents' performance and from residents for assessments of their performance and of the OSCE case. This manuscript aims to describe this educational intervention and to demonstrate the feasibility of this approach for feedback skills development.
PMID: 35169006
ISSN: 1526-632x
CID: 5163442

Applying systems thinking to identify enablers and challenges to scale-up interventions for hypertension and diabetes in low-income and middle-income countries: protocol for a longitudinal mixed-methods study

Ramani-Chander, Anusha; Joshi, Rohina; van Olmen, Josefien; Wouters, Edwin; Delobelle, Peter; Vedanthan, Rajesh; Miranda, J Jaime; Oldenburg, Brian; Sherwood, Stephen; Rawal, Lal B; Mash, Robert James; Irazola, Vilma Edith; Martens, Monika; Lazo-Porras, Maria; Liu, Hueiming; Agarwal, Gina; Waqa, Gade; Marcolino, Milena Soriano; Esandi, Maria Eugenia; Ribeiro, Antonio Luiz Pinho; Probandari, Ari; González-Salazar, Francisco; Shrestha, Abha; Sujarwoto, Sujarwoto; Levitt, Naomi; Paredes, Myriam; Sugishita, Tomohiko; Batal, Malek; Li, Yuan; Haghparast-Bidgoli, Hassan; Naanyu, Violet; He, Feng J; Zhang, Puhong; Mfinanga, Sayoki Godfrey; De Neve, Jan-Walter; Daivadanam, Meena; Siddiqi, Kamran; Geldsetzer, Pascal; Klipstein-Grobusch, Kerstin; Huffman, Mark D; Webster, Jacqui; Ojji, Dike; Beratarrechea, Andrea; Tian, Maoyi; Postma, Maarten; Owolabi, Mayowa O; Birungi, Josephine; Antonietti, Laura; Ortiz, Zulma; Patel, Anushka; Peiris, David; Schouw, Darcelle; Koot, Jaap; Nakamura, Keiko; Tampubolon, Gindo; Thrift, Amanda G
INTRODUCTION/BACKGROUND:There is an urgent need to reduce the burden of non-communicable diseases (NCDs), particularly in low-and middle-income countries, where the greatest burden lies. Yet, there is little research concerning the specific issues involved in scaling up NCD interventions targeting low-resource settings. We propose to examine this gap in up to 27 collaborative projects, which were funded by the Global Alliance for Chronic Diseases (GACD) 2019 Scale Up Call, reflecting a total funding investment of approximately US$50 million. These projects represent diverse countries, contexts and adopt varied approaches and study designs to scale-up complex, evidence-based interventions to improve hypertension and diabetes outcomes. A systematic inquiry of these projects will provide necessary scientific insights into the enablers and challenges in the scale up of complex NCD interventions. METHODS AND ANALYSIS/METHODS:data using inductive thematic coding. The data extraction tool and interview guides were developed based on a literature review of scale-up frameworks. ETHICS AND DISSEMINATION/BACKGROUND:The current protocol was approved by the Monash University Human Research Ethics Committee (HREC number 23482). Informed consent will be obtained from all participants. The study findings will be disseminated through peer-reviewed publications and more broadly through the GACD network.
PMID: 35437244
ISSN: 2044-6055
CID: 5202122

Reimagining Connected Care in the Era of Digital Medicine

Mann, Devin M; Lawrence, Katharine
The COVID-19 pandemic accelerated the adoption of remote patient monitoring technology, which offers exciting opportunities for expanded connected care at a distance. However, while the mode of clinicians' interactions with patients and their health data has transformed, the larger framework of how we deliver care is still driven by a model of episodic care that does not facilitate this new frontier. Fully realizing a transformation to a system of continuous connected care augmented by remote monitoring technology will require a shift in clinicians' and health systems' approach to care delivery technology and its associated data volume and complexity. In this article, we present a solution that organizes and optimizes the interaction of automated technologies with human oversight, allowing for the maximal use of data-rich tools while preserving the pieces of medical care considered uniquely human. We review implications of this "augmented continuous connected care" model of remote patient monitoring for clinical practice and offer human-centered design-informed next steps to encourage innovation around these important issues.
PMID: 35436238
ISSN: 2291-5222
CID: 5202102

Factors influencing the integration of evidence-based task-strengthening strategies for hypertension control within HIV clinics in Nigeria

Iwelunmor, Juliet; Ezechi, Oliver; Obiezu-Umeh, Chisom; Oladele, David; Nwaozuru, Ucheoma; Aifah, Angela; Gyamfi, Joyce; Gbajabiamila, Titilola; Musa, Adesola Z; Onakomaiya, Deborah; Rakhra, Ashlin; Jiyuan, Hu; Odubela, Oluwatosin; Idigbe, Ifeoma; Engelhart, Alexis; Tayo, Bamidele O; Ogedegbe, Gbenga
BACKGROUND:Evidence-based task-strengthening strategies for hypertension (HTN) control (TASSH) are not readily available for patients living with HIV in sub-Saharan Africa where the dual burden of HTN and HIV remains high. We are conducting a cluster randomized controlled trial comparing the effectiveness of practice facilitation versus a self-directed control (i.e., receipt of TASSH with no practice facilitation) in reducing blood pressure and increasing the adoption of task-strengthening strategies for HTN control within HIV clinics in Nigeria. Prior to implementing the trial, we conducted formative research to identify factors that may influence the integration of TASSH within HIV clinics in Nigeria. METHODS:This mixed-methods study was conducted with purposively selected healthcare providers at 29 HIV clinics, followed by a 1-day stakeholder meeting with 19 representatives of HIV clinics. We collected quantitative practice assessment data using two instruments: (a) an adapted Service Availability and Readiness Assessment (SARA) tool to assess the capacity of the clinic to manage NCDs and (b) Implementation Climate Scale to assess the degree to which there is a strategic organizational climate supportive of the evidence-based practice implementation. The quantitative data were analyzed using descriptive statistics and measures of scale reliability. We also used the Consolidated Framework for Implementation Research (CFIR), to thematically analyze qualitative data generated and relevant to the aims of this study. RESULTS:Across the 29 clinics surveyed, the focus on TASSH (mean=1.77 (SD=0.59)) and educational support (mean=1.32 (SD=0.68)) subscales demonstrated the highest mean score, with good-excellent internal consistency reliability (Cronbach's alphas ranging from 0.84 to 0.96). Within the five CFIR domains explored, the major facilitators of the intervention included relative advantage of TASSH compared to current practice, compatibility with clinic organizational structures, support of patients' needs, and intervention alignment with national guidelines. Barriers included the perceived complexity of TASSH, weak referral network and patient tracking mechanism within the clinics, and limited resources and diagnostic equipment for HTN. CONCLUSION/CONCLUSIONS:Optimizing healthcare workers' implementation of evidence-based TASSH within HIV clinics requires attention to both the implementation climate and contextual factors likely to influence adoption and long-term sustainability. These findings have implications for the development of effective practice facilitation strategies to further improve the delivery and integration of TASSH within HIV clinics in Nigeria. TRIAL REGISTRATION/BACKGROUND:ClinicalTrials.gov , NCT04704336.
PMCID:9013085
PMID: 35428342
ISSN: 2662-2211
CID: 5219142

Assessing the effectiveness of a LGBT cultural competency training for oncologists: study protocol for a randomized pragmatic trial

Seay, Julia; Hernandez, Eryk N; Pérez-Morales, Jaileene; Quinn, Gwendolyn P; Schabath, Matthew B
BACKGROUND:LGBT patients may have unique psychosocial cancer care needs, and healthcare providers should have knowledge and understanding of these unique needs to effectively address disparities through the delivery of personalized healthcare. As such, our group developed and piloted a web-based LGBT cultural competency training designed specifically for oncologists called the Curriculum for Oncologists on LGBT populations to Optimize Relevance and Skills (COLORS). We designed a randomized pragmatic trial for oncologists to compare the effectiveness of the COLORS training versus a general online LGBT cultural competency training in improving LGBT-related knowledge, attitudes, and clinical practices. METHODS/DESIGN/METHODS:Study procedures include an 8-step approach for recruitment, randomization, retention, and completion of the interventions. Oncologists of any subspecialty who are currently practicing physicians will be identified from the American Medical Association Masterfile. Approximately 5000 oncologists will be sent a FedEx envelope with an invitation letter and study timeline. Electronic consent is obtained using a secure REDCap (Research Electronic Data Capture) portal hosted at the Moffitt Cancer Center (Tampa, FL) where the oncologists will complete the eligibility questionnaire, pre-training assessments, and then will be randomized to complete the COLORS training or an online general healthcare training offered by the National LGBT Health Education Center. Effectiveness of both trainings will be assessed utilizing self-reported measures of LGBT-related knowledge, attitudes, and affirming clinical practices. The measures will be collected before and directly after training completion, as well as 3-month post-training completion. The primary outcomes are changes in knowledge, attitudes, and practice behaviors regarding LGBT cancer patients from pre-test to post-test training in the COLORS training vs. the comparison training. DISCUSSION/CONCLUSIONS:The overarching premise of this trial is to assess the effectiveness of the COLORS cultural competency training program. If successful, among oncologists who completed the COLORS training should yield statistically significantly improvements in knowledge, attitudes, and affirming practice.
PMCID:9013168
PMID: 35428352
ISSN: 1745-6215
CID: 5202052

Prenatal exposure to polycyclic aromatic hydrocarbons and gestational age at birth

Freije, Sophia L; Enquobahrie, Daniel A; Day, Drew B; Loftus, Christine; Szpiro, Adam A; Karr, Catherine J; Trasande, Leonardo; Kahn, Linda G; Barrett, Emily; Kannan, Kurunthachalam; Bush, Nicole R; LeWinn, Kaja Z; Swan, Shanna; Alex Mason, W; Robinson, Morgan; Sathyanarayana, Sheela
BACKGROUND:Polycyclic aromatic hydrocarbons (PAHs) are ubiquitous chemicals with mechanisms of toxicity that include endocrine disruption. We examined associations of prenatal urinary PAH with spontaneous preterm birth (PTB) and gestational age (GA) at birth. We also assessed whether infant sex modifies the association of PAH exposure with spontaneous PTB and GA at birth. METHODS:-transformed OH-PAH concentrations as the exposure, adjusted for specific gravity and suspected confounders. Effect modification by infant sex was assessed using interaction terms and marginal estimates. RESULTS:Percent detection was highest for 2-OH-NAP (99.8%) and lowest for 1-OH-PYR (65.2%). Prevalence of spontaneous PTB was 5.5% (N = 92). Ten-fold higher 2-OH-NAP exposure was associated with 1.60-day (95% CI: -2.92, -0.28) earlier GA at birth. Remaining associations in the pooled population were null. Among females, we observed significant inverse associations between 1-OH-PYR and PTB (OR: 2.65 [95% CI: 1.39, 5.05]); and 2-OH-NAP with GA: -2.46 days [95% CI: -4.15, -0.77]). Among males, we observed an inverse association between 2/3/9-OH-FLUO and PTB (OR = 0.40 [95% CI: 0.17,0.98]). ORs for PTB were higher among females than males for 2-OH-PHEN (p = 0.02) and 1-OH-PYR (p = 0.02). DISCUSSION/CONCLUSIONS:We observed inverse associations of 2-OH-NAP exposure with GA and null associations of remaining OH-PAHs with GA and PTB. Females may be more susceptible to spontaneous PTB or shorter GA following prenatal exposure to some OH-PAHs. This study is the first to assess sex-specific OH-PAH toxicity in relation to spontaneous PTB and GA.
PMID: 35453081
ISSN: 1873-6750
CID: 5218652

GeriKit: a novel app for comprehensive geriatric assessment

Viswanathan, Ambika V; Dodson, John A; Blachman, Nina L
Given the growth of the older adult population in the United States, there is a greater need for tools to enable students, trainees, and clinicians to master the comprehensive geriatric assessment. Our goal was to develop a mobile phone application (app) to assist in performing this assessment. We performed a market survey of 45 apps that related to geriatrics and health screening. We evaluated for usability, target audience, and instruments used. Deficiencies included: (1) focusing on a single domain; (2) being time-intensive; and (3) having components behind a paywall. We then designed an app that incorporates instruments that are well-validated, available at no cost, and brief in length. GeriKit includes eight domains: cognition, depression, function, strength, medications, falls, and advance care planning. Each instrument requires fewer than 5 minutes, and once it is completed and scored, the user can access relevant educational materials. GeriKit was launched for Apple users in December 2020, and for Android in August 2021. There have been over 3,400 downloads to date. The GeriKit app makes the comprehensive geriatric assessment accessible to a wide audience, improving the ability to for learners to perform geriatric assessments.
PMID: 35404774
ISSN: 1545-3847
CID: 5218942