Mind the gap in kidney care: translating what we know into what we do / Atenção às lacunas no cuidado renal: traduzindo o que sabemos em ações

Abstract Historically, it takes an average of 17 years for new treatments to move from clinical evidence to daily practice. Given the highly effective treatments now available to prevent or delay kidney disease onset and progression, this is far too long. Now is the time to narrow the gap between what we know and what we do. Clear guidelines exist for the prevention and management of common risk factors for kidney disease, such as hypertension and diabetes, but only a fraction of people with these conditions are diagnosed worldwide, and even fewer are treated to target. Similarly, the vast majority of people living with kidney disease are unaware of their condition, because it is often silent in the early stages. Even among patients who have been diagnosed, many do not receive appropriate treatment for kidney disease. Considering the serious consequences of kidney disease progression, kidney failure, or death, it is imperative that treatments are initiated early and appropriately. Opportunities to diagnose and treat kidney disease early must be maximized beginning at the primary care level. Many systematic barriers exist, ranging from the patient to the clinician to the health systems to societal factors. To preserve and improve kidney health for everyone everywhere, each of these barriers must be acknowledged so that sustainable solutions are developed and implemented without further delay.

Resumo Historicamente, são necessários, em média, 17 anos para que novos tratamentos passem da evidência clínica para a prática diária. Considerando os tratamentos altamente eficazes disponíveis atualmente para prevenir ou retardar o início e a progressão da doença renal, esse período é demasiadamente longo. Agora é o momento de reduzir a lacuna entre o que sabemos e aquilo que fazemos. Existem diretrizes claras para a prevenção e o manejo dos fatores de risco comuns para doenças renais, como hipertensão e diabetes, mas apenas uma fração das pessoas com essas condições é diagnosticada mundialmente, e um número ainda menor recebe tratamento adequado. Da mesma forma, a grande maioria das pessoas que sofrem de doença renal não têm conhecimento de sua condição, pois ela costuma ser silenciosa nos estágios iniciais. Mesmo entre pacientes que foram diagnosticados, muitos não recebem tratamento adequado para a doença renal. Levando em consideração as graves consequências da progressão da doença renal, insuficiência renal ou óbito, é imperativo que os tratamentos sejam iniciados precocemente e de maneira adequada. As oportunidades para diagnosticar e tratar precocemente a doença renal devem ser maximizadas, começando no nível da atenção primária. Existem muitas barreiras sistemáticas, que vão desde o paciente até o médico, passando pelos sistemas de saúde e por fatores sociais. Para preservar e melhorar a saúde renal para todos em qualquer lugar, cada uma dessas barreiras deve ser reconhecida para que soluções sustentáveis sejam desenvolvidas e implementadas sem mais demora.

IRB Consent Guidelines: Potential Barriers to Diversity in Research.

Despite initiatives aimed at improving study participation and inclusion among ethnic and racially minoritized and marginalized populations, participation remains low. While necessary to ensure ethical practice in human participant research, certain Institutional Review Board (IRB) guidelines may introduce additional barriers in research involving these populations. This work outlines guidelines pertaining to consent translation for non-English speaking populations and offers discussion on a greater emphasis for more inclusive methods for marginalized communities. The University of Wisconsin's IRB approved alternative oral consent processes after the community partner determined that standard translation processes would be inefficient. Researchers used translated consent materials for four different ethnic groups (Hmong, Karen, Karenni, and Burmese). We provided recorded consents in each respective language to participants before study participation and obtained verbal consent prior to study participation at the study location. We experienced time and resource constraints in both access to translators and the consent-translation process itself. Furthermore, many participants were unable to read in their native language making standard written consent processes both difficult and impractical. Oral discussion and verbal consent processes were efficient. Adjustments to consent-related guidelines may prevent and eliminate time and resource-related barriers in consent processes. In eliminating such barriers, subsequent improved efficiency in both study design and study promotion areas can work to better promote diversity in research among populations that emphasize oral language and in instances where literacy rates in written non-English language may be lower.

A social-ecological approach to support equitable land use decision-making.

Human-driven land use change can result in unequitable outcomes in the provision and appropriation of ecosystem services (ES). To better address equity-related effects of land use change in decision-making, analyses of land use and ES changes under different land use management alternatives should incorporate ecological and social information and take a disaggregated approach to ES analysis. Because such approaches are still scarce in the literature, we present a generalized social-ecological approach to support equitable land use decision-making (in terms of process and outcomes) and an example of its application to a case study in southwestern Ethiopia. We propose a six-step approach that combines scenario planning with equity-focused, disaggregated analyses of ES. Its application in our study area made equity-related effects of land use change explicit through the recognition of different beneficiary groups, value types, and spatial locations. We recommend the application of our approach in other contexts, especially in the Global South.

Limited Awareness of Long COVID Despite Common Experience of Symptoms Among African American/Black, Hispanic/Latino, and Indigenous Adults in Arizona.

OBJECTIVES: Communities of color might disproportionately experience long-term consequences of COVID-19, known as Long COVID. We sought to understand the awareness of and experiences with Long COVID among African American/Black (AA/B), Hispanic/Latino (H/L), and Indigenous (Native) adults (18 + years of age) in Arizona who previously tested positive for COVID-19. METHODS: Between December 2022 and April 2023, the Arizona Community Engagement Alliance (AZCEAL) conducted 12 focus groups and surveys with 65 AA/B, H/L and Native community members. Data from focus groups were analyzed using thematic analysis to identify emerging issues. Survey data provided demographic information about participants and quantitative assessments of Long COVID experiences were used to augment focus group data. RESULTS: Study participants across all three racial/ethnic groups had limited to no awareness of the term Long COVID, yet many described experiencing or witnessing friends and family endure physical symptoms consistent with Long COVID (e.g., brain fog, loss of memory, fatigue) as well as associated mental health issues (e.g., anxiety, worry, post-traumatic stress disorder). Participants identified a need for Long COVID mental health and other health resources, as well as increased access to Long COVID information. CONCLUSION: To prevent Long COVID health inequities among AA/B, H/L, and Native adults living in AZ, health-related organizations and providers should increase access to culturally relevant, community-based Long COVID-specific information, mental health services, and other health resources aimed at serving these populations.

Accessibility to Health Care Services and Treatment for People with Noncommunicable Diseases in Northwest Syria.

We assessed the accessibility to health care services and treatment for people with noncommunicable diseases (NCDs) in Northwest Syria after more than eleven years of the worst humanitarian crisis in Syria. Included in this cross-sectional study were people with one or more of cardiovascular diseases, diabetes, cancer, or chronic obstructive pulmonary diseases; people from both Aleppo and Idleb governorates; and residents from both inside and outside the camp. Data were collected in November 2022 via face-to-face interviews. The findings were obtained from 674 respondents (52.8% female). Respondents in Idleb were 6.5 times more likely to access health care services than Aleppo (p = 0000). In-camp residents were 1.5 times more likely to access outreach health services (p = 0.020). Respondents with higher income were three times more likely to access health care services compared to respondents with lower income (p = 0.000). Having any of the surveyed NCDs made the respondents less likely to get the required services. The study findings added more evidence about the inequity in terms of accessing health care services in Northwest Syria and identified the barriers. It was clear that a perceived group of people with NCDs do not have access to the health care services, including outreach health services and free medications.

Relationship between geographic accessibility to emergency services and infant mortality: A systematic review and meta-analysis.

AIM: To evaluate the methodological quality of studies that analysed the relationship between accessibility to emergency services and infant mortality. METHODS: A systematic review with meta-analysis, registered on the international prospective register of systematic reviews (PROSPERO) platform under code CRD42021279854. Medline/Pubmed, Embase, SciElo, Lilacs, Scopus and web of science electronic databases were searched between November 2021 and May 2024, without language or publication time restriction. We included observational studies that compared the infant mortality outcome with the different distances travelled or travel time to health services in a paediatric emergency. Thus, we excluded studies with primary outcomes present in the pre- and perinatal periods, as well as distances or travel time to obstetric emergency units. We used the grade to assess the methodological quality of the studies and the Newcastle-Ottawa scale for the risk of bias, in addition to performing a meta-analysis. RESULTS: The evidence quality on infant mortality was moderate for four studies and low for three studies. The meta-analysis showed that children who travelled more than 5 km to the emergency service had a 28% increase in the chance of dying (P = 0.002), as well as those travelling for more than 40 min increased by 45% (P < 0.001). CONCLUSIONS: There was a relationship between the increase in geographic accessibility distance and travel time with the increase in infant mortality. However, the studies still showed moderate to low methodological quality.

Health Equity Considerations for Children With Type 1 Diabetes Who Utilize Insulin Cost-Sharing Cap Programs.

The cost associated with type 1 diabetes care is considerable and the rising price of insulin has further amplified this financial burden. To curb insulin costs, numerous policies have been enacted in the past five years, both by pharmaceutical companies and their intermediaries, as well as federal and state legislatures. The most notable example is implementation of insulin cost-sharing cap laws, which place limits on out-of-pocket expenses for insulin, and in some cases, diabetes technology. Although insulin cost-sharing cap laws have the potential to mitigate the financial burden associated with routine diabetes care, these policies have largely benefitted adults living with type 1 diabetes, while children, especially those from racial and ethnic underrepresented groups, appear to have derived limited advantage. We describe the current state of insulin cost-sharing cap laws and utilization among children and adolescents with type 1 diabetes, with a focus on the limitations of current insulin laws, the importance of measuring health outcomes for children who utilize such programs, and the impact on health equity. We provide a call to action for policymakers and provide recommendations for future research in this area.

Expanding a Behavioral View on Digital Health Access: Drivers and Strategies to Promote Equity.

The potential and threat of digital tools to achieve health equity has been highlighted for over a decade, but the success of achieving equitable access to health technologies remains challenging. Our paper addresses renewed concerns regarding equity in digital health access that were deepened during the COVID-19 pandemic. Our viewpoint is that (1) digital health tools have the potential to improve health equity if equitable access is achieved, and (2) improving access and equity in digital health can be strengthened by considering behavioral science-based strategies embedded in all phases of tool development. Using behavioral, equity, and access frameworks allowed for a unique and comprehensive exploration of current drivers of digital health inequities. This paper aims to present a compilation of strategies that can potentially have an actionable impact on digital health equity. Multilevel factors drive unequal access, so strategies require action from tool developers, individual delivery agents, organizations, and systems to effect change. Strategies were shaped with a behavioral medicine focus as the field has a unique role in improving digital health access; arguably, all digital tools require the user (individual, provider, and health system) to change behavior by engaging with the technology to generate impact. This paper presents a model that emphasizes using multilevel strategies across design, delivery, dissemination, and sustainment stages to advance digital health access and foster health equity.

A Hybrid Type III Analysis of a Filmed Story-Telling Intervention's Impact on Provider Stigma.

Identity Development Evolution and Sharing (IDEAS) reduces provider stigma, but few have been trained to implement IDEAS, highlighting a need for implementation strategies that facilitate uptake. We evaluated whether external facilitation successfully supported IDEAS implementation and whether IDEAS reduced provider stigma within and across sites irrespective of implementation barriers and facilitators. Key informants from 10 sites completed interviews and surveys of appropriateness, acceptability, and feasibility. Interviews were analyzed using the Consolidated Framework for Implementation Research guidelines. Intervention effectiveness was measured via paired t tests of pre-/post-quantitative data on provider stigma completed by practitioners who attended the training. Ten sites successfully implemented IDEAS via external facilitation; 58 practitioners from nine sites completed pre- and post-surveys. Data showed significant decreases in stigma after the intervention. IDEAS, supported by external facilitation, is a feasible, acceptable, and appropriate means of reducing stigma among occupational therapy practitioners.

External Facilitation Supports the Successful Use of "Identity Development Evolution and Sharing" (IDEAS)­An Intervention That Effectively Reduces Harmful Biases Among Occupational TherapistsThis study is important for clinical managers and other change agents wishing to address provider biases in healthcare settings. The study expands an existing program for reducing healthcare provider bias called "Identity Development Evolution and Sharing" or "IDEAS." IDEAS is a program created by an occupational therapist who sought to improve healthcare experiences for those who have been harmed by implicit biases among healthcare providers. IDEAS involves watching filmed stories of people who have been harmed by stigma within healthcare and then having a reflective discussion about the film, creating a safe space in which providers can evaluate their biases and consider ways in which they might make positive changes. This study is important for managers and other change agents because it highlights characteristics of organizations that can both support and hinder the use of IDEAS in clinical settings. These factors can be taken into consideration prior to using an intervention such as IDEAS to support the degree to which an organization succeeds at implementing the program. This study also explains how the creator of IDEAS provides external support to facilitate staff in leading an IDEAS intervention. In addition, this study will be of interest to implementation scholars and/or people who would like to learn more about methods for measuring barriers and facilitators to integrating new programs in clinical settings.

Responsible artificial intelligence for addressing equity in oral healthcare.

Oral diseases pose a significant burden on global healthcare. While many oral conditions are preventable and manageable through regular dental office visits, a substantial portion of the population faces obstacles in accessing essential and affordable quality oral healthcare. In this mini review, we describe the issue of inequity and bias in oral healthcare and discuss various strategies to address these challenges, with an emphasis on the application of artificial intelligence (AI). Recent advances in AI technologies have led to significant performance improvements in oral healthcare. AI also holds tremendous potential for advancing equity in oral healthcare, yet its application must be approached with caution to prevent the exacerbation of inequities. The "black box" approaches of some advanced AI models raise uncertainty about their operations and decision-making processes. To this end, we discuss the use of interpretable and explainable AI techniques in enhancing transparency and trustworthiness. Those techniques, aimed at augmenting rather than replacing oral health practitioners' judgment and skills, have the potential to achieve personalized dental and oral care that is unbiased, equitable, and transparent. Overall, achieving equity in oral healthcare through the responsible use of AI requires collective efforts from all stakeholders involved in the design, implementation, regulation, and utilization of AI systems. We use the United States as an example due to its uniquely diverse population, making it an excellent model for our discussion. However, the general and responsible AI strategies suggested in this article can be applied to address equity in oral healthcare on a global level.

PSA Levels and Mortality in Prostate Cancer Patients.

INTRODUCTION: Prostate cancer (PC) is the second most common cancer among men around the world. Several smaller studies have explored the relationship between elevated PSA and mortality, but results have been conflicting. Additionally, studies have shown that Black men are more likely to be diagnosed with PC at late-stages and may have a twofold increase in mortality risk. This study aims to evaluate the relationship between PSA levels and mortality in patients with PC and differences between Black versus White patients. METHODS: In this retrospective study, the TriNetX database, was used to extract de-identified EMRs of 198,083 patients. Patients were included if they were diagnosed with PC and had obtained a PSA level (measured in ng/mL) within 6 months prior to diagnosis. Cohorts were separated into 7 groups based on intervals of PSA, ranging from < 2 to ≥ 500 and compared to a control cohort with a PSA of 4 to 20 for differing 2-year mortality rates. A subgroup analysis was performed to compare mortality differences between Black and White patients. A posthoc analysis evaluated 5- and 10-year mortality amongst all patients with PC. RESULTS: After propensity matching, mortality risk was significantly lower for patients with PSA < 2 (5.9% vs. 7.5%; RR 0.784; P < .001) when compared to the control cohort. Mortality was significantly higher for all other subsequent PSA intervals > 20, with the lowest risk ratios at PSA 20-100 (24.1% vs. 10.0%; RR 2.419; P < .001) and highest at PSA 200 to 500 (50.4% vs. 10.8%; RR 4.673; P < .001). The sub-group analysis showed that when compared to White patients, Black patients with PSA < 20 had similar mortalities, but had significantly lower 2-year mortality rates at PSA levels ≥ 20. The posthoc analysis of PSA levels and 5- and 10-year mortality of all patients with PC showed similar trends to the 2-year outcomes. CONCLUSION: This study found that prostate cancer patients with significantly elevated PSA levels have a greater mortality, and Black patients have lower 2-year mortality rates than their White counterparts when matched for PSA levels greater than 20.

Decomposition analysis to assess intervention strategies for reducing health-related exposure disparities in Michigan public drinking water systems.

OBJECTIVE: Contamination in U.S. public drinking water systems (PWS) is estimated to cause millions of illnesses and billions of dollars in medical expenditures annually. Few prior studies have explored intervention strategies, including environmental enforcement, to reduce estimated health-related exposure disparities (exposure disparity) in PWS, which are driven partially by socioeconomic status (SES), racism, and PWS characteristics. METHOD: This study used a longitudinal measurement method to estimate the annual health-related exposure level (health level) of each PWS in Michigan, based on data from the Enforcement and Compliance Online (ECHO) and U.S. Census Bureau databases. Using a decomposition model with four strategies, we analyzed how eliminating disparities in SES, proportion minority, environmental enforcement, and PWS characteristics across communities would affect adjusted exposure disparities. RESULTS: This study found that adjusted race- and poverty-based exposure disparities have existed since the 1980s but might have decreased in the last one or two decades. PWS characteristics strongly impacted the crude and adjusted exposure disparity. Environmental enforcement, although less effective in minority-concentrated communities, reduced the adjusted race-based exposure disparity by 10%-20% in the 1980s, 8% in the 1990s, and 0.012% in the 2010s. Equalizing the poverty rate distribution reduced the adjusted race-based exposure disparity by 0.72% in the 1980s and 6.8% in the 2010s. However, equalizing racial and ethnic composition distribution increased the adjusted poverty-based exposure disparity in the 2000s. CONCLUSION: These findings indicate that economically disadvantaged or minority-concentrated communities in Michigan disproportionately suffer from poorer PWS quality. Enhanced environmental enforcement, increased household income, PWS investment, and other actions are needed to address these exposure disparities effectively.

A health equity science approach to assessing drivers of COVID-19 vaccination coverage disparities over the course of the COVID-19 pandemic, United States, December 2020-December 2022.

INTRODUCTION: Health equity science examines underlying social determinants, or drivers, of health inequities by building an evidence base to guide action across programs, public health surveillance, policy, and communications efforts. A Social Vulnerability Index (SVI) was utilized during the COVID-19 response to identify areas where inequities exist and support communities with vaccination. We set out to assess COVID-19 vaccination coverage by two SVI themes, Racial and Ethnicity Minority Status and Housing Type and Transportation to examine disparities. METHODS: US county-level COVID-19 vaccine administration data among persons aged 5 years and older reported to the Centers for Disease Control and Prevention from December 14, 2020 to December 14, 2022, were analyzed. Counties were categorized 1) into tertiles (low, moderate, high) according to each SVI theme's level of vulnerability or 2) dichotomized by urban or rural classification. Primary series vaccination coverage per age group were assessed for SVI social factors by SVI theme tertiles or urbanicity. RESULTS: Older adults aged 65 years and older had the highest vaccination coverage across all vulnerability factors compared with children aged 5-17 years and adults aged 18-64 years. Overall, children and adults had higher vaccination coverage in counties of high vulnerability. Greater vaccination coverage differences were observed by urbanicity as rural counties had some of the lowest vaccination coverage for children and adults. CONCLUSION: COVID-19 vaccination efforts narrowed gaps in coverage for adults aged 65 years and older but larger vaccination coverage differences remained among younger populations. Moreover, greater disparities in coverage existed in rural counties. Health equity science approaches to analyses should extend beyond identifying differences by basic demographics such as race and ethnicity and include factors that provide context (housing, transportation, age, and geography) to assist with prioritization of vaccination efforts where true disparities in vaccination coverage exist.

A framework for decolonising and diversifying biomedical sciences curricula: rediscovery, representation and readiness.

To date, most efforts to decolonise curricula have focussed on the arts and humanities, with many believing that science subjects are objective, unbiased, and unaffected by colonial legacies. However, science is shaped by both contemporary and historical culture. Science has been used to support imperialism, to extract and exploit knowledge and natural resources, and to justify racist and ableist ideologies. Colonial legacies continue to affect scientific knowledge generation and shape contemporary research priorities. In the biomedical sciences, research biases can feed into wider health inequalities. Reflection of these biases in our taught curricula risks perpetuating long-standing inequities to future generations of scientists. We examined attitudes and understanding towards decolonising and diversifying the curriculum among students and teaching staff in the biomedical sciences at the University of Bristol, UK, to discover whether our current teaching practice is perceived as inclusive. We used a mixed methods study including surveys of staff (N = 71) and students (N = 121) and focus groups. Quantitative data showed that staff and students think decolonising the curriculum is important, but this is more important to female respondents (P < 0.001). Students are less aware than staff of current efforts to decolonise the curriculum, while students from minority ethnic groups feel less represented by the curriculum than white students. Thematic analysis of qualitative data revealed three themes that are important for a decolonised curriculum in our context: rediscovery, representation and readiness. We propose that this '3Rs framework' could guide future efforts to decolonise and diversify the curriculum in the biomedical sciences and beyond.

Securing the rights and health of domestic workers: the importance of ratifying the ILO's C189.

This commentary highlights the critical importance of ratifying the International Labour Organization's (ILO) Domestic Workers Convention No. 189-2011 (C189) to secure the rights and health of domestic workers (DWs) worldwide, particularly in light of the World Health Organization's World Health Day 2024 theme 'My Health, My Right'. The ILO's C189 represents a significant advancement in labour rights, offering protection to a highly feminised sector where women make up 80% of the estimated 50-100 million DWs worldwide. The ILO's C189 aims to address the marginalisation and exploitation that DWs have historically faced by ensuring that they receive the same protections as other workers. This encompasses measures against abuse, harassment and violence, and the establishment of a secure and healthy working environment, as outlined in Article 13. The commentary emphasises the urgent need for the enactment of legal frameworks in countries such as Indonesia, where many of the approximately 10 million DWs encounter shocking abuses both within the country and abroad. The ratification of the C189 and the enactment of national laws, such as Indonesia's Draft Law on the Protection of Domestic Workers (RUU PPRT), are essential for the safeguarding of the rights and health of DWs. The commentary compares Indonesia with the Philippines, as the latter has been a signatory to the C189 since 2012 and has enacted its National Domestic Workers Act in 2013. The ratification of the C189, therefore, is imperative for igniting the protection and advancement of labour rights for DWs globally. This ILO's C189 represents a significant first step in addressing the long-standing and complex issues of marginalisation and exploitation prevalent in this predominantly female sector. It is also essential that the potential obstacles and concerns related to the ratification and implementation of the ILO's C189 are addressed collaboratively by stakeholders and not viewed as justifications for inaction.

The Impact of Kinlessness on Older Adults with Advanced Heart Failure.

Markers of social health, including kinlessness, social isolation, and loneliness, have important implications for quality of life and health for older adults. As the population ages, there is a growing cohort of kinless older adults without living partners or children, particularly among disadvantaged groups. Kinlessness has been associated with worse mental and physical health, significant unmet care needs, increased risk of dementia, higher rates of long-term placement, and higher mortality than for patients with kin. Though other markers of social health have been studied in patients with heart failure, little is known about kinlessness in this patient population. This review outlines the data on kinlessness, its impact on patient outcomes, and proposes novel interventions to mitigate its effects.

Comparing English- and Spanish-Reading Patients' Comprehension of the Drug Facts Label for a New Over-The-Counter Oral Contraceptive.

BACKGROUND: Health literacy is known to impact health outcomes in a multitude of ways and is impacted by language barriers. Lower health literacy is also associated with higher rates of unintended pregnancies. A progestin-only oral hormonal contraception product, norgestrel (Opill-Perrigo), was approved for over-the-counter (OTC) use in the United States in July 2023. OBJECTIVE: (s): The objective was to utilize a knowledge assessment survey to determine participants' comprehension of norgestrel from its drug facts label and compare the comprehension between primarily English- and Spanish-reading participants. METHODS: A 7-item knowledge assessment was developed and distributed to English and Spanish readers at one site within a network of federally qualified health centers. English-reading participants completed the English survey alongside use of an English copy of norgestrel's drug facts label. Spanish-reading participants completed the Spanish survey and were randomized in a 1:1 fashion to either receive an English or Spanish copy of norgestrel's drug facts label. RESULTS: The English-reading/English label (E/E) group had a higher level of comprehension of norgestrel's drug facts label compared to the Spanish-reading/English label (S/E) or Spanish-reading/Spanish label (S/S) groups. CONCLUSION: Differences exist in OTC label comprehension for norgestrel based on primary language able to be read. Advocacy for OTC labels to be readily available in languages other than English is imperative to mitigate unintended pregnancies associated with lower levels of health literacy.

Using a participatory action research approach to explore, understand and evaluate well-being among children living in socially deprived areas in Southern Sweden: a study protocol.

INTRODUCTION: Research suggests that participating in after-school leisure activities has been related to promoting health, well-being and safety among children living in disadvantaged neighbourhoods. The United Nations Child Rights Convention emphasises the inclusion of children in decisions that concern them. However, children seldom are involved in designing implementing and evaluating health promotional environments. The aim of this programme is through a participatory process with children, parents/guardians, and peer-activity leaders explore, measure and evaluate the impact on children's overall well-being related to the social context in an already established health promotion environments in Southern Sweden. METHODS AND ANALYSIS: The project is based on a previously implemented unique community-based participatory research (CBPR) model for equal health in three socially disadvantaged areas in Malmö. All activity house (AAH) is a meeting place for children established in schools but after school time by the culture department of the Malmö municipality. In AAH migrant children participate in need-driven after school activities that they themselves create and develop. To increase participation of the children and ensure that these environments are based on their needs, 30 children (10-12 years), parents/guardians (30), peer-activity leaders (15), and researchers create CBPR teams in the areas and engage in a participatory process. The children reflect, analyse and write about their well-being; identify and discuss key factors in an iterative process, which also includes a strategic group of stakeholders. The children then develop and validate (with 100 other children from AAH) the Socioculturally Aligned Survey Instrument for Children survey inspired by the KIDSSCREEN V.27. The survey tool so developed will further be used to evaluate AAH and will be distributed to all children participating in their activities. ETHICS AND DISSEMINATION: This programme has been approved by the Swedish Ethical Review Authority. The results from this programme will be published as reports and scientific publication.

Disparities in Penile Cancer Incidence, Mortality, and Place of Death Trends From 1999 to 2020.

INTRODUCTION: Penile cancer is rare in the United States (US); however, disparities have been found in the incidence, treatment, and outcomes of penile cancer. There is a need for evaluation of recent trends in penile cancer mortality, incidence, and place of death across all demographics. MATERIALS AND METHODS: Using the CDC WONDER database, penile cancer-specific mortality (PNCSM) trends in the US were evaluated from 1999 to 2020 by race/ethnicity, age group, census region, and place of death. Penile cancer incidence trends for the US from 1995 to 2019 were gathered from the NAACCR database. Average annual percent changes for mortality and incidence rates were determined using Joinpoint regression modeling. Univariable and multivariable logistic regression were used to evaluate independent predictors associated with place of death. RESULTS: From 1999 to 2020, 5833 people died from penile cancer in the US. Overall PNCSM increased by 1.8% per year from 1999-2020 (95% CI, 1.3%, 2.2%). Non-Hispanic White patients and Hispanic patients had increasing PNCSM rates from 1999-2020 (2.1 [95% CI, 1.5%, 2.7%]; 1.9 [95% CI, 1.0%, 2.8%], respectively). From the place of death analysis, Hispanic patients were at higher odds of dying at home or hospice when compared to non-Hispanic White patients (adjusted odds ratio [aOR] = 1.19, P = .045). Age-adjusted incidence rates for all stages of penile cancer increased significantly from 1995-2016 (AAPC, 0.7% [95% CI, 0.4%, 1.0%]), driven by regional and distant penile cancer incidence rates (AAPC 1995-2019, regional: 2.0% [95% CI, 1.7%, 2.4%]; AAPC 1995-2019, distant: 2.5% [95% CI, 1.8%, 3.1%]). CONCLUSION: The increasing penile cancer-specific mortality and incidence rates indicate the need for further improvements in screening, diagnosis, and treatment. Widespread efforts across all demographics are needed to ensure early detection of the disease.