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Background Cancer patients incur high care costs; however, there is a paucity of literature characterizing unmet financial obligations for patients with urologic cancers. Kidney cancer patients are particularly burdened by costs associated with novel systemic treatments. This study aimed to ascertain the characteristics of GoFundMe® crowdfunding campaigns for patients with kidney cancer, in order to better understand the financial needs of this population. Methods We performed a cross‐sectional, quantitative, and qualitative analysis of all kidney cancer GoFundMe® campaigns since 2010. Fundraising metrics such as goal funds and amount raised, were extracted. Eight independent investigators collected patient, disease and campaign‐level variables from campaign stories (κ = 0.72). In addition, we performed a content analysis of campaign narratives spotlighting the primary appeal of the patient's life story. Results A total of 486 GoFundMe® kidney cancer campaigns were reviewed. The median goal funds were 10,000USD [IQR = 5000, 20,000] and the median amount raised was 1450USD [IQR = 578, 4050]. Most campaigns were for adult males (53%) and 62% of adults had children. A minority were for pediatric patients (17%). Thirty‐seven percent of adult patients were primary wage earners and 43% reported losing their job or substantially reducing hours due to illness. Twenty‐nine percent reported no insurance or insufficient coverage. Campaigns most frequently sought funds for medical bills (60%), nonmedical bills (27%), and medical travel (23%). Qualitative campaign narratives mostly emphasized patients’ hardship (46.3%) or high moral character (35.2%). Only 8% of campaigns achieved their target funds. Conclusions Despite fundraising efforts, patients with kidney cancer face persistent financial barriers, incurring both medical and nonmedical cost burdens. This may be compounded by limited or no insurance. Cancer care providers should be aware of financial constraints placed on kidney cancer patients, and consider how these may impact treatment regimens. This work spotlights online crowdfunding campaigns for patients with kidney cancer. By elucidating patient and campaign characteristics, we are able to better understand the financial needs of this population.

In the past year, more Nigerians have been killed by state-sanctioned security forces than by COVID-19, according to data on the Nigeria Security Tracker and Worldometers.1 Formed in 1992, the Special Anti-Robbery Squad (SARS) has become the public threat the squad was created to prevent. Health systems in LMICs should be equipped to provide high-quality care.6 Outcomes on quality of care in LMICs should be examined with a new lens accounting for the social, legal, and ethical context of care delivery. Collaboration between health-care providers, researchers, and networks on violence prevention can facilitate the development of community-driven action plans.

PurposeComplementary and alternative medicine (CAM) use is common amongst cancer patients. However, there is growing concern about its safety and efficacy. Online crowdfunding campaigns represent a unique avenue to understand the cancer patient’s perspective for using CAM or declining conventional cancer therapy (CCT).MethodsFive hundred GoFundMe campaigns from 2012 to 2019 detailing financial need for cancer treatment were randomly selected and reviewed for endorsement of CAM use, reasons for using CAM, and reasons for declining CCT. Descriptive statistics were used to compare patient and campaign characteristics between 250 CAM users and 250 non-CAM users.ResultsCompared to non-CAM users, CAM users were more likely to be female (70% vs. 54%, p < 0.01), to report more stage IV cancer (54% vs. 12%, p < 0.01), and to have a history of delayed, missed, or misdiagnosis (10% vs. 4%, p < 0.01). Reasons for using CAM include endorsing curative/therapeutic effects 212 (85%), pain/stress reduction 137 (55%), and dissatisfaction with current or past medical treatment options 105 (42%). 87 (35%) CAM users that declined CCT reported that they wanted to try to fight off cancer using CAM first 57 (61%), that CCT was too “toxic” to the body 39 (42%), and cancer was already too advanced, so that CCT would be futile or too aggressive 25 (27%).ConclusionCancer patients on GoFundMe using CAM highly value quality of life, comfort, and autonomy. Physicians should educate themselves on CAM to set realistic expectations and provide comprehensive counseling of the risks and benefits of CAM usage to patients who choose to use CAM to either augment or completely replace CCT.

PurposeAlterations in the urinary microbiome have been associated with urological diseases. The microbiome of patients with urethral stricture disease (USD) remains unknown. Our objective is to examine the microbiome of USD with a focus on inflammatory USD caused by lichen sclerosus (LS).MethodsWe collected mid-stream urine samples from men with LS-USD (cases; n = 22) and non-LS USD (controls; n = 76). DNA extraction, PCR amplification of the V4 hypervariable region of the 16S rRNA gene, and sequencing was done on the samples. Operational taxonomic units (OTUs) were defined using a > 97% sequence similarity threshold. Alpha diversity measurements of diversity, including microbiome richness (number of different OTUs) and evenness (distribution of OTUs) were calculated and compared. Microbiome beta diversity (difference between microbial communities) relationships with cases and controls were also assessed.ResultsFifty specimens (13 cases and 37 controls) produced a 16S rRNA amplicon. Mean sample richness was 25.9 vs. 16.8 (p = 0.076) for LS-USD vs. non-LS USD, respectively. LS-USD had a unique profile of bacteria by taxonomic order including Bacillales, Bacteroidales and Pasteurellales enriched urine. The beta variation of observed bacterial communities was best explained by the richness.ConclusionsMen with LS-USD may have a unique microbiologic richness, specifically inclusive of Bacillales, Bacteroidales and Pasteurellales enriched urine compared to those with non-LS USD. Further work will be required to elucidate the clinical relevance of these variations in the urinary microbiome.

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.

ObjectiveDespite increasing incidence of genital gender-affirming surgery (GGAS), there is no systematic method of evaluating patient perspectives. The objective of this study is to elucidate transgender and non-binary patient perspectives on gender-affirming phalloplasty/metoidioplasty via structured focus groups and determine convergent themes as the first step towards the development of a GGAS patient-reported outcome measure.DesignWe conducted a systematic qualitative study using a thematic content analysis of four focus groups from April 2021 to April 2022 comprising 8 patients undergoing phalloplasty/metoidioplasty and 10 patients post-phalloplasty/metoidioplasty. Focus groups were hosted virtually and recorded and transcribed. Discussions were guided by participant input and focused on goals, experiences, outcomes, satisfaction, and quality of life.SettingThis volunteer but purposive sample of patients was recruited directly in clinic, via email, and via social media at NYU Langone Health (primary site), Callen-Lorde Community Health Center (New York, New York, USA) and the San Francisco Community Health Center.ParticipantsWe conducted focus groups with 18 patients before/after undergoing gender-affirming phalloplasty/metoidioplasty.Primary and secondary outcome measurements and statistical analysisTranscripts were uploaded into ATLAS.ti, a qualitative data analysis software that facilitates coding for thematic content analysis. We performed deductive and inductive coding to identify the themes that were clustered into overarching domains.ResultsThe mean duration of focus groups was 81.5 min. Seven themes and 19 subthemes were constructed. The major themes were (1) goals, expectations, and priorities before/after surgery; (2) sexual function; (3) urinary function; (4) peer support; (5) decision-making; (6) mental health and quality of life; and (7) gender dysphoria. Of the major themes, those determined before the study included themes 1–3 and 6–7. Limitations include small sample size and bias in patient selection.ConclusionsWe conducted focus groups with 18 patients before/after undergoing gender-affirming phalloplasty/metoidioplasty. Mental health, quality of life, functional, and aesthetic outcomes are all critical to patients. Phalloplasty/metoidioplasty impact numerous aspects of patients’ lives. Experiential components of the surgical process, mental health, and quality of life are important metrics to consider in addition to functional and aesthetic outcomes.

In this study, we sought to determine the burden and characteristics of orgasmic dysfunction (OD) and concomitant erectile dysfunction (ED) in men with type 1 diabetes (T1D) enrolled in the Epidemiology of Diabetes Interventions and Complications (EDIC) study. In 2010, we assessed orgasmic and erectile function using the International Index of Erectile Function (IIEF). Sociodemographic, clinical, and diabetes characteristics were compared by OD status (OD only, OD and ED, no ED or OD). Age-adjusted associations between risk factors and OD status were examined. OD and ED information was available from 563 men. Eighty-three men (14.7%) reported OD of whom 21 reported OD only and 62 reported OD and ED. Age-adjusted odds ratios demonstrated that men who reported OD only had higher odds of depression, low sexual desire, and decreased alcohol use compared with men reporting no dysfunction. Men with OD concomitant with ED had greater odds of elevated hemoglobin A1C, peripheral and autonomic neuropathy, and nephropathy. Men reporting both dysfunctions were also more likely to report smoking, lower urinary tract symptoms, and had greater odds of androgen deficiency than men with no sexual dysfunction. Men with longstanding T1D suffer from an increased burden of OD. Psychogenic factors predominate in men reporting OD only while men who present with concomitant ED report increased burden of diabetes severity, characteristics previously observed with incident ED. ED may be the central impediment to sexual function in men with OD and ED. Longitudinal studies to characterize OD and ED experience over time are warranted.