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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

Limited Evidence for Use of a Black Race Modifier in eGFR Calculations: A Systematic Review

Marzinke, Mark A; Greene, Dina N; Bossuyt, Patrick M; Chambliss, Allison B; Cirrincione, Lauren R; McCudden, Christopher R; Melanson, Stacy E F; Noguez, Jaime H; Patel, Khushbu; Radix, Asa E; Takwoingi, Yemisi; Winston-McPherson, Gabrielle; Young, Bessie A; Hoenig, Melanie P
BACKGROUND:Commonly used estimated glomerular filtration rate (eGFR) equations include a Black race modifier (BRM) that was incorporated during equation derivation. Race is a social construct, and a poorly characterized variable that is applied inconsistently in clinical settings. The BRM results in higher eGFR for any creatinine concentration, implying fundamental differences in creatinine production or excretion in Black individuals compared to other populations. Equations without inclusion of the BRM have the potential to detect kidney disease earlier in patients at the greatest risk of chronic kidney disease (CKD), but also has the potential to over-diagnose CKD or impact downstream clinical interventions. The purpose of this study was to use an evidence- based approach to systematically evaluate the literature relevant to the performance of the eGFR equations with and without the BRM and to examine the clinical impact of the use or removal. CONTENT/BACKGROUND:PubMed and Embase databases were searched for studies comparing measured GFR to eGFR in racially diverse adult populations using the Modification of Diet in Renal Disease or the 2009-Chronic Kidney Disease Epidemiology Collaboration-creatinine equations based on standardized creatinine measurements. Additionally, we searched for studies comparing clinical use of eGFR calculated with and without the BRM. 8,632 unique publications were identified; an additional 3 studies were added post-hoc. In total, 96 studies were subjected to further analysis and 44 studies were used to make a final assessment. SUMMARY/CONCLUSIONS:There is limited published evidence to support the use of a BRM in eGFR equations.
PMID: 34927677
ISSN: 1530-8561
CID: 5092682

Determining the Benefits of Gender-Affirming Surgery-A Call for Action

Agochukwu-Mmonu, Nnenaya; Radix, Asa; Fendrick, A Mark
PMID: 34851378
ISSN: 2168-6262
CID: 5065712

Comparing Electronic Health Record Domains' Utility to Identify Transgender Patients

Dubin, Samuel; Cook, Tiffany; Liss, Alison; Doty, Glenn; Moore, Kevin; Greene, Richard; Radix, Asa; Janssen, Aron
Purpose: Earlier literature has reported on the utility of diagnostic codes and demographic information for identifying transgender patients. We aim to assess which method identifies the most transgender patients utilizing readily available tools from within the electronic health record (EHR). Methods: A de-identified patient database from a single EHR that allows for searching any discrete data point in the EHR was used to query International Statistical Classification of Diseases and Related Health Problems, 10th Revision (ICD-10) diagnostic codes and demographic data specific to transgender patients from January 2011 to April 2019. Results: Demographic data and ICD-10 codes yielded 1494 individual EHRs with transgender-specific data domains. ICD-10 diagnostic codes alone identified 942 (63.05%) unique EHRs. Demographics alone identified 218 (14.59%) unique EHRs. A total of 334 (22.36%) unique EHRs had both ICD-10 and demographic identifiers. Of those identified by transgender-specific demographic data (552), 294 (53.26%) were trans masculine, 215 (38.95%) were trans feminine, and 43 (7.79%) were nonbinary. Of the 552 demographic-identified transgender patients, 141 (25.86%) were identified by a two-part gender identity demographic question. Conclusions: ICD-10 diagnostic codes, not demographic data, identified the most transgender patient records, but neither diagnostic codes alone nor demographic data captured the full population. Only 26.36% of the charts identified as transgender patients had both ICD-10 codes and demographic data. We recommend that when identifying transgender populations through EHR domains, a combination of diagnostic codes and demographic data be used. Furthermore, research is needed to optimize disclosure and collection of demographic information for gender minority populations.
SCOPUS:85125203935
ISSN: 2380-193x
CID: 5188022

Together-Equitable-Accessible-Meaningful (TEAM) Training to Improve Cancer Care for Sexual and Gender Minorities (SGM): Outcomes from a Pilot Study

Pratt-Chapman, Mandi L; Wang, Yan; Eckstrand, Kristen; Radix, Asa; Quinn, Gwendolyn P; Schabath, Matthew B; Lopez, Ana Maria
To alleviate health disparities experienced by sexual and gender minority (SGM) patients, cancer care professionals need further education on the needs of SGM cancer patients and their loved ones and caregivers. The Together-Equitable-Accessible-Meaningful (TEAM) Training to Improve Cancer Care for SGM Patients (TEAM SGM) was developed and piloted to address this need. This study reports healthcare professional learner outcomes from the TEAM SGM pilot intervention. The TEAM SGM Training pilot consisted of 2.5 h of content from the original online self-paced TEAM Training plus 12 1-h Zoom sessions on specialized topics in addition to readings and activities. Participants (n = 28), representing seven cancer service organizations from six states in the USA, were recruited through newsletter listservs and social media. All participants (n = 28) completed the pre-test and twenty-two participants completed the post-test. Using five factors confirmed in a separate Confirmatory Factor Analysis, paired t-tests of TEAM SGM participant pre- and post-test data were conducted. Statistically significant improvements were found in four of five factors: Environmental Cues (t(21) = 2.56, p = .018), Knowledge (t(21) = 2.15, p = .043), Clinical Preparedness (t(7) = 3.89, p = .006), Clinical Behaviors (t(21) = 2.48, p = .022). The Attitudes factor was not significantly improved from pre-intervention to post-intervention likely due to strong affirming attitudes toward SGM patients at baseline. TEAM SGM is a feasible, effective training to build capacity in SGM-affirming care for cancer care providers.
PMID: 35013901
ISSN: 1543-0154
CID: 5118572

Setting a research agenda in trans health: An expert assessment of priorities and issues by trans and nonbinary researchers

Veale, Jaimie F.; Deutsch, Madeline B.; Devor, Aaron H.; Kuper, Laura E.; Motmans, Joz; Radix, Asa E.; Amand, Colt St
Background: This article is by a group of trans and nonbinary researchers and experts in the field of trans health who have conducted an analysis of trans health research needs. Aims: To highlight topics that need further research and to outline key considerations for those conducting research in our field. Methods: The first author conducted semi-structured interviews with all coauthors, and these were used to create a first draft of this manuscript. This draft was circulated to all authors, with edits made until consensus was reached among the authors. Results: More comprehensive long-term research that centers trans people"™s experiences is needed on the risks and benefits of gender affirming hormones and surgeries. The trans health research field also needs to have a broader focus beyond medical transition or gender affirmation, including general health and routine healthcare; trans people"™s lives without, before, and after medical gender affirmation; and sexuality, fertility, and reproductive healthcare needs. More research is also needed on social determinants of health, including ways to make healthcare settings and other environments safer and more supportive; social and legal gender recognition; the needs of trans people who are most marginalized; and the ways in which healing happens within trans communities. The second part of this article highlights key considerations for researchers, the foremost being acknowledging trans community expertise and centering trans community members"™ input into research design and interpretation of findings, in advisory and/or researcher roles. Ethical considerations include maximizing benefits and minimizing harms (beneficence) and transparency and accountability to trans communities. Finally, we note the importance of conferences, grant funding, working with students, and multidisciplinary teams. Discussion: This article outlines topics and issues needing further consideration to make the field of trans health research more responsive to the needs of trans people. This work is limited by our authorship group being mostly White, all being Anglophone, and residing in the Global North.
SCOPUS:85126471609
ISSN: 2689-5269
CID: 5189512

HIV Testing During Pregnancy, at Delivery, and Postpartum

Chapter by: Wright, Rodney L.; McGowan, Joseph P.; Fine, Steven M.; Vail, Rona M.; Merrick, Samuel T.; Radix, Asa E.; Hoffmann, Christopher J.; Rodrigues, Jessica; Gonzalez, Charles J.
in: New York State Department of Health AIDS Institute Clinical Guidelines by
Baltimore : Johns Hopkins Press, 2021
pp. -
ISBN:
CID: 5096552

PEP to Prevent HIV Infection

Chapter by: DeHaan, Elliot; McGowan, Joseph P.; Fine, Steven M.; Vail, Rona; Merrick, Samuel T.; Radix, Asa; Hoffmann, Christopher J.; Gonzalez, Charles J.
in: New York State Department of Health AIDS Institute Clinical Guidelines by
Baltimore : Johns Hopkins Press, 2021
pp. -
ISBN:
CID: 5096512

Patient-centered practices for engaging transgender and gender diverse patients in clinical research studies

Asquith, Andrew; Sava, Lauren; Harris, Alexander B; Radix, Asa E; Pardee, Dana J; Reisner, Sari L
BACKGROUND:The purpose of this formative study was to assess barriers and facilitators to participation of transgender and gender diverse (TGD) patients in clinical research to solicit specific feedback on perceived acceptability and feasibility of research methods to inform creation of a multisite longitudinal cohort of primary care patients engaged in care at two community health centers. METHOD:Between September-November 2018, four focus groups (FGs) were convened at two community health centers in Boston, MA and New York, NY (N = 28 participants across all 4 groups; 11 in Boston and 17 in New York). FG guides asked about patient outreach, acceptability of study methods and measures, and ideas for study retention. FGs were facilitated by TGD study staff, lasted approximately 90 min in duration, were audio recorded, and then transcribed verbatim by a professional transcription service. Thematic analyses were conducted by two independent analysts applying a constant comparison method. Consistency and consensus were achieved across code creation and application aided by Dedoose software. RESULTS:Participants were a mean age of 33.9 years (SD 12.3; Range 18-66). Participants varied in gender identity with 4 (14.3%) men, 3 (10.7%) women, 8 (28.6%) transgender men, 10 (35.7%) transgender women, and 3 (10.7%) nonbinary. Eight (26.6%) were Latinx, 5 (17.9%) Black, 3 (10.7%) Asian, 3 (10.7%) another race, and 5 (17.9%) multiracial. Motivators and facilitators to participation were: research creating community, research led by TGD staff, compensation, research integrated into healthcare, research applicable to TGD and non-TGD people, and research helping TGD communities. Barriers were: being research/healthcare averse, not identifying as TGD, overlooking questioning individuals, research coming from a 'cisgender lens", distrust of how the research will be used, research not being accessible to TGD people, and research being exploitative. CONCLUSION:Though similarities emerged between the perspectives of TGD people and research citing perspectives of other underserved populations, there are barriers and facilitators to research which are unique to TGD populations. It is important for TGD people to be involved as collaborators in all aspects of research that concerns them.
PMCID:8487157
PMID: 34598674
ISSN: 1471-2288
CID: 5092662

Selecting an Initial ART Regimen

Chapter by: Urbina, Antonio E.; McGowan, Joseph P.; Fine, Steven M.; Vail, Rona; Merrick, Samuel T.; Radix, Asa; Hoffmann, Christopher J.; Gonzalez, Charles J.
in: New York State Department of Health AIDS Institute Clinical Guidelines by
Baltimore : Johns Hopkins Press, 2021
pp. -
ISBN:
CID: 5096542