Mark S. Litwin

Background An increasing number of nonbinary patients are receiving gender-affirming procedures due to improved access to care. However, the preferred treatments for nonbinary patients are underdescribed. The purpose of this study was to investigate the goals and treatments of nonbinary patients. Methods A retrospective study of patients who self-identified as nonbinary from our institutional Gender Health Program was conducted. Patient demographics, clinical characteristics, surgical goals, and operative variables were analyzed. Results Of the 375 patients with gender dysphoria, 67 (18%) were nonbinary. Over half of the nonbinary patients were assigned male at birth (n = 57, 85%) and nearly half preferred the gender pronoun they/them/theirs (n = 33, 49%). A total of 44 patients (66%) received hormone therapy for an average of 2.5 ± 3.6 years, primarily estrogen (n = 39). Most patients (n = 46, 69%) received or are interested in gender-affirming surgery, of which, almost half were previously on hormone therapy (n = 32, 48%). The most common surgeries completed or desired were facial feminization surgery (n = 15, 22%), vaginoplasty (n = 15, 22%), mastectomy (n = 11, 16%), and orchiectomy (n = 9, 13%). Nonbinary patients who were assigned male at birth (NB-AMAB) were more often treated with hormones compared to nonbinary patients assigned female at birth (NB-AFAB) (72% vs. 30%, p = 0.010). Conversely, patients who were AFAB were more likely to complete or desire surgical intervention than those who were AMAB (100% vs. 63.0%, p < 0.021). Conclusion Majority of nonbinary patients were assigned male at birth. NB-AFAB patients all underwent surgical treatment, whereas NB-AMAB patients were predominantly treated with hormone therapy.

Journal of Medical Internet Research - International Scientific Journal for Medical Research, Information and Communication on the Internet #Preprint #PeerReviewMe: Warning: This is a unreviewed preprint. Readers are warned that the document has not been peer-reviewed by expert/patient reviewers or an academic editor, may contain misleading claims, and is likely to undergo changes before final publication, if accepted, or may have been rejected/withdrawn. Readers with interest and expertise are encouraged to sign up as peer-reviewer, if the paper is within an open peer-review period. Please cite this preprint only for review purposes or for grant applications and CVs (if you are the author). Background: Geosocial networking (GSN) apps play a pivotal role in catalyzing sexual partnering, especially among men who have sex with men (MSM). Objective: To quantify the United States (US) prevalence and disparities in disclosure of pre-exposure prophylaxis (PrEP) use and COVID-19 vaccination among GSN app users, mostly MSM. Methods: We randomly sampled online Grindr profiles from the top 50 metropolitan areas as well as the 50 most rural counties in the US by population. Grindr provides an option to disclose current PrEP use (HIV positive, HIV negative, or HIV negative with PrEP use). We analyzed the free text in all profiles and recorded any mention of COVID-19 vaccination, which is passively reported. We performed multivariable logistic regression to assess independent associations with PrEP disclosure and COVID-19 vaccination. We used imputation analyses to test the robustness of the results. Results: We evaluated 1,889 urban and 384 rural profiles. Mean age among urban profiles was 32.9 years (SD 9.6); mean age among rural profiles was 33.5 years (SD 12.1), p=0.41. Among the urban profiles, 16% reported being vaccinated against COVID-19 and 23% reported PrEP use compared to 10% and 8% in rural profiles, respectively (p<0.01). Reporting COVID-19 vaccination (adjusted OR 1.7, 95%CI 1.2-2.4), living in an urban center (aOR 3.2, 95%CI 1.8-5.7), and showing a face picture as part of the Grindr profile (aOR 4.0, 95%CI 2.3-7.0) were positively associated with PrEP disclosure. Self-identified Black and Latino users were less likely to report PrEP use (aOR 0.6, 95%CI 0.4-0.9 and aOR 0.5, 95%CI 0.4-0.9, respectively). Reporting PrEP use (aOR 1.7, 95%CI 1.2-2.4), living in an urban center (aOR 2.5, 95%CI 1.4-4.5), ‘discreet’ status (aOR 1.6, 95%CI 1.0-2.5), and showing a face picture (aOR 2.7, 95%CI 1.5-4.8) were positively associated with reporting COVID-19 vaccination on the profile. Users in the southern US were less likely than users in the northeast to report COVID-19 vaccination (aOR 0.6, 95%CI 0.3-0.9). Conclusions: Variations in PrEP disclosure are associated with race, whereas COVID-19 vaccination disclosure is associated with geographic area. However, rural GSN users were less likely to report both PrEP use and COVID-19 vaccination. We demonstrate a need to expand health preventative services in the rural US for sexual minorities. GSN platforms may be ideal for deployment of preventative interventions to improve access for this difficult to reach population. Clinical Trial: n/a

Visual timelines of patient-reported outcomes (PRO) can help prostate cancer survivors manage longitudinal data, compare with population averages, and consider future trajectories. PRO visualizations are most effective when designed with deliberate consideration of users. Yet, graph literacy is often overlooked as a design constraint, particularly when users with limited graph literacy are not engaged in their development. We conducted user testing to assess comprehension, utility, and preference of longitudinal PRO visualizations designed for prostate cancer survivors with limited literacy. Building upon our prior work co-designing longitudinal PRO visualizations with survivors, we engaged 18 prostate cancer survivors in a user study to assess 4 prototypes: Meter, Words, Comic, and Emoji. During remote sessions, we collected data on prototype comprehension (gist and verbatim), utility, and preference. Participants were aged 61–77 (M = 69), of whom half were African American. The majority of participants had less than a college degree (95%), had inadequate health literacy (78%), and low graph literacy (89%). Among the 4 prototypes, Meter had the best gist comprehension and was preferred. Emoji was also preferred, had the highest verbatim comprehension, and highest rated utility, including helpfulness, confidence, and satisfaction. Meter and Words both rated mid-range for utility, and Words scored lower than Emoji and Meter for comprehension. Comic had the poorest comprehension, lowest utility, and was least preferred. Findings identify design considerations for PRO visualizations, contributing to the knowledge base for visualization best practices. We describe our process to meaningfully engage patients from diverse and hard-to-reach groups for remote user testing, an important endeavor for health equity in biomedical informatics. Graph literacy is an important design consideration for PRO visualizations. Biomedical informatics researchers should be intentional in understanding user needs by involving diverse and representative individuals during development.

Since 2017, the TrueNTH Global Registry (TNGR) has aimed to drive improvement in patient outcomes for individuals with localized prostate cancer by collating data from healthcare institutions across 13 countries. As TNGR matures, a systematic evaluation of existing processes and documents is necessary to evaluate whether the registry is operating as intended. The main supporting documents: protocol and data dictionary, were comprehensively reviewed in a series of meetings over a 10-month period by an international working group. In parallel, individual consultations with local institutions regarding a benchmarking quality-of-care report were conducted. Four consensus areas for improvement emerged: updating operational definitions, appraisal of the recruitment process, refinement of data elements, and improvement of data quality and reporting. Recommendations presented were drawn from our collective experience and accumulated knowledge in operating an international registry. These can be readily generalized to other health-related reporting programs beyond clinical registries.

Andrew T Lenis, MD MS, Mark S Litwin, MD MPH; Does Artificial Intelligence Meaningfully Enhance Cystoscopy?, JNCI: Journal of the National Cancer Institute, , d