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Congenital anomalies of the external genitalia (CAEG) are a prevalent and serious public health concern with lifelong impacts on the urinary function, sexual health, fertility, tumor development, and psychosocial wellbeing of affected individuals. Complications of treatment are frequent, and data reflecting long-term outcomes in adulthood are limited. To identify a path forward to improve treatments and realize the possibility of preventing CAEG, the National Institute of Diabetes and Digestive and Kidney Diseases and the American Urological Association convened researchers from a range of disciplines to coordinate research efforts to fully understand the different etiologies of these common conditions, subsequent variation in clinical phenotypes, and best practices for long term surgical success. Meeting participants concluded that a central data hub for clinical evaluations, including collection of DNA samples from patients and their parents, and short interviews to determine familial penetrance (small pedigrees), would accelerate research in this field. Such a centralized datahub will advance efforts to develop detailed multi-dimensional phenotyping and will enable access to genome sequence analyses and associated metadata to define the genetic bases for these conditions. Inclusion of tissue samples and integration of clinical studies with basic research using human cells and animal models will advance efforts to identify the developmental mechanisms that are disrupted during development and will add cellular and molecular granularity to phenotyping CAEG. While the discussion focuses heavily on hypospadias, this can be seen as a potential template for other conditions in the realm of CAEG, including cryptorchidism or the exstrophy-epispadias complex. Taken together with long-term clinical follow-up, these data could inform surgical choices and improve likelihood for long-term success.

Background: Pain is important for patients with kidney failure, but opioid medication prescriptions are associated with morbidity and mortality. The Centers for Disease Control and Prevention issued opioid prescription guidelines in 2016 and 2022, associated with dramatically decreased prescription rates in the United States. It is critical to know if nationwide opioid prescription rates for patients with kidney failure have decreased., Methods: We analyzed the USRDS database from 2011 to 2020 to describe trends in the proportion of ESKD patients who received one or more, or long-term opioid prescriptions, examined factors associated with long-term opioid prescriptions, and evaluated associations of all-cause death with short-term or long-term opioid prescriptions., Results: From 2011-2022, the percentage of patients with kidney failure (dialysis and kidney transplant) who received at least one or more, or who had received long-term opioid medication prescriptions decreased steadily, from 60% to 42%, and from 23% to 13%, respectively (both P for trend <0.001). The largest reductions in prescription rates were for hydrocodone and oxycodone. Similar trends existed for dialysis and kidney transplant patients. Women, the poor and those in rural settings were more likely to receive long-term opioid prescriptions. Prescription rates were highest in White patients and those 45 to 64 years old. Short-term and long-term opioid medication prescriptions were associated with higher mortality in both dialysis and kidney transplant patients., Conclusions: ESKD patients' opioid prescription rates decreased between 2011 and 2020. Higher mortality risk was associated with both short-term and long-term opioid prescriptions. Mortality risk was monotonically associated with morphine milligram equivalents in patients with kidney failure who received long-term opioid prescriptions., (Copyright © 2024 by the American Society of Nephrology.)

Objective: Financial strain and unmet social needs are associated with greater risk for lower urinary tract symptoms. Little research has examined financial strain and unmet social needs in relation to the more holistic concept of bladder health. This study utilizes baseline data from RISE FOR HEALTH: A U.S. Study of Bladder Health to examine whether financial strain, unmet social needs, and meeting specific federal poverty level threshold levels are associated with lower urinary tract symptoms and poorer perceived bladder health, well-being, and function., Study Design: Participants were 18 years or older, born female or currently identified as a woman, and from the civilian, noninstitutionalized population residing in 50 counties in the United States that included or surrounded 9 recruitment centers. Data were collected through mailed or internet-based surveys. To address research questions, the 10-item Lower Urinary Tract Dysfunction Research Network - Symptom Index and selected Prevention of Lower Urinary Tract Symptoms Research Consortium bladder health scores were separately regressed on each financial strain, unmet social need, and federal poverty level variable, using linear regression adjusting for covariates (age, race/ethnicity, education, and vaginal parity) and robust variance estimation for confidence intervals (CI). Participants with no missing data for a given analysis were included (range of n=2564-3170). In separate sensitivity analyses, body mass index, hypertension, and diabetes were added as covariates and missing data were imputed., Results: The mean age of participants was 51.5 years (standard deviation=18.4). Not having enough money to make ends meet, housing insecurity, food insecurity, unreliable transportation, and percent federal poverty levels of 300% or less were consistently associated with more reported lower urinary tract symptoms and poorer perceived bladder health. For example, compared to food secure participants, women who worried that their food would run out at the end of the month had a Lower Urinary Tract Dysfunction Research Network - Symptom Index score that was 3.4 points higher (95% CI: 2.5, 4.3), on average. They also had lower mean scores across different bladder health measures, each assessed using a 100-point scale: global bladder health (-8.2, 95% CI: -10.8, -5.7), frequency (-10.2, 95% CI: -13.8, -6.7), sensation (-11.6, 95% CI: -15.1, -8.2), continence (-13.3, 95% CI: -16.7, -9.9), and emotional impact of bladder health status (-13.2, 95% CI: -16.5, -9.9). Across analyses, associations largely remained significant after additional adjustment for body mass index, hypertension, and diabetes. The pattern of results when imputing missing data was similar to that observed with complete case analysis; all significant associations remained significant with imputation., Conclusion: Financial strain and unmet social needs are associated with worse LUTS and poorer bladder health. Longitudinal research is needed to examine whether financial strain and unmet social needs influence the development, maintenance, and worsening of lower urinary tract symptoms; different mechanisms by which financial strain and unmet social needs may impact symptoms; and the degree to which symptoms contribute to financial strain. If supported by etiologic research, prevention research can be implemented to determine whether the amelioration of financial strain and social needs, including enhanced access to preventative care, may promote bladder health across the life course., (Copyright © 2024 Elsevier Inc. All rights reserved.)

Background: People living with multiple chronic conditions (MCCs) face substantial challenges in planning and coordinating increasingly complex care. Family caregivers provide important assistance for people with MCCs but lack sufficient support. Caregiver apps have the potential to help by enhancing care coordination and planning among the health care team, including patients, caregivers, and clinicians., Objective: We aim to conduct a scoping review to assess the evidence on the development and use of caregiver apps that support care planning and coordination, as well as to identify key factors (ie, needs, barriers, and facilitators) related to their use and desired caregiver app functionalities., Methods: Papers intersecting 2 major domains, mobile health (mHealth) apps and caregivers, that were in English and published from 2015 to 2021 were included in the initial search from 6 databases and gray literature and ancestry searches. As per JBI (Joanna Briggs Institute) Scoping Review guidelines and PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews), 2 authors independently screened full texts with disagreements resolved by a third author. Working in pairs, the authors extracted data using a pilot-tested JBI extraction table and compared results for consensus., Results: We identified 34 papers representing 25 individual studies, including 18 (53%) pilot and feasibility studies, 13 (38%) qualitative studies, and 2 experimental or quasi-experimental studies. None of the identified studies assessed an intervention of a caregiver app for care planning and coordination for people with MCCs. We identified important caregiver needs in terms of information, support, and care coordination related to both caregiving and self-care. We compiled desired functionalities and features enabling apps to meet the care planning and care coordination needs of caregivers, in particular, the integration of caregiver roles into the electronic health record., Conclusions: Caregiver needs identified through this study can inform developers and researchers in the design and implementation of mHealth apps that integrate with the electronic health record to link caregivers, patients, and clinicians to support coordinated care for people with MCCs. In addition, this study highlights the need for more rigorous research on the use of mHealth apps to support caregivers in care planning and coordination., (©Marjorie M Kelley, Tia Powell, Djibril Camara, Neha Shah, Jenna M Norton, Chelsea Deitelzweig, Nivedha Vaidy, Chun-Ju Hsiao, Jing Wang, Arlene S Bierman. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 23.05.2024.)