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Understanding trends in end-of-life care for bladder cancer patients is essential in improving palliative care planning. This study analyzes trends in preferred place of death among bladder cancer patients in the United States from year 2000 to 2020.
Methods
Data from the CDC WONDER database were used to identify 293,906 deaths caused by bladder cancer. Further data on patient place of death, age, demographics, census geographic region, and year of death were recorded. Place of death was used as a proxy for preferred place of death. A multivariable binary logistic regression analysis was performed to determine associations between preferred place of death and other variables.
Results
At-home deaths were most common among individuals aged 75–84 years of age (42,644 deaths) and 85+ years of age (32,806 deaths). Hospice use was highest among the 75–84 age group (8,754 deaths) and 85+ age group (7,358 deaths). Nursing home deaths were highest in the 85+ age group (26,216 deaths), with significant age-related differences (p < 0.001). In terms of racial variations, White individuals accounted for 93.6% of all deaths. Black individuals were less likely to utilize hospice care (p < 0.001). Overall, race differences were significantly associated with place of death (p < 0.001). The number of home deaths rose from 4,281 in 2000 to 8,554 in 2020, and hospice deaths also rose significantly during this time period. Interestingly, younger individuals were more likely to die in hospice compared to those aged 85 years or older, though the odds decreased with age. Black individuals had significantly lower odds of hospice use than White patients (OR = 0.699, p < 0.001) and hospice use increased annually by an average of 13.4% (p < 0.001).
Significance of results
The results indicate that utilization of hospice care and home-based end-of-life care have risen in prominence though disparities are present across racial and regional groups. Further studies are needed to better understand potential barriers to end-of-life care among bladder cancer patients.
Edited by
Latika Chaudhary, Naval Postgraduate School, Monterey, California,Tirthankar Roy, London School of Economics and Political Science,Anand V. Swamy, Williams College, Massachusetts
This chapter focuses on two major axes of social identity in India: caste and tribe. It provides an overview of the two categories, in particular focusing on how the categories are identified and measured in national-level macro data. It summarizes key features of contemporary economic disparities along these two dimensions. The chapter discusses the overlap between caste/tribal status and religion and provides a summary overview of the racial theory of caste. Tribe as a category has specific dimensions that are distinct from the caste system. The chapter reviews these and moves on to a discussion of the intersection of caste/tribe category with sex. The evidence in the chapter suggests that caste and tribe continue to define socio-economic status in contemporary India. India’s affirmative-action policies addressing caste, tribe and gender disparities are necessary, but not sufficient, to lower the influence of the lottery of birth on individual outcomes.
This chapter explores the journey from principles to the practical implementation of sustainable development and subsequently the codified global Sustainable Development Goals (SDGs). It begins by examining the foundational principles of international law that guide sustainable development efforts by reviewing in detail the history and motivation behind adopting a global set of goals to achieve holistic and measurable sustainable development by 2030. Then, the chapter focuses on the intersection between Indigenous peoples and the SDGs, acknowledging the historical disparities faced by these communities and how treaties have the potential to foster or frustrate the achievement of these goals. It then delves into guidelines for sustainable resource management and Indigenous development within the SDG framework, emphasizing inclusive approaches and participatory decision-making. By bridging principles with practical strategies, this chapter underscores the importance of integrating Indigenous knowledge, fostering partnerships, and implementing the SDGs to achieve sustainable development while respecting Indigenous rights and aspirations.
How much do we care when no one is looking? A patient with critical injury and vulnerable to bias—as an uninsured Person of Color experiencing homelessness and social isolation, with a history of mental illness and drug use— experiences barriers to receiving necessary treatment and standard care. When a patient is unable to ask for help, and has no family member or friend to help, what standard of care can they hope to receive? Can the quality of care provided to unrepresented patients represent a hospital’s culture of care? The writer wonders whether to “stay in my lane” and focus only on the ethical question prompting consultation, or if the principles of beneficence and nonmaleficence justify speaking up about substandard care. To mitigate the risk of acting as the “ethics police” by engaging in micromanagement of patient care, the writer describes efforts to expand ethics’ scope to change systemic and cultural attitudes by establishing preventative measures to identify and combat bias and preemptive judgments of futility.
This shorter chapter focuses on one groundbreaking bio-psycho-social network meta-study related to historical trauma in the virtual absence of social science studies. It centers on studies on health and associated health disparities in diaspora populations with migrants from India and Pakistan of the second and third generations. Topics are suicide rates of South Asian women, somatoform symptoms and disorders, and physical health conditions like cardiovascular disease and type 2 diabetes. In addition, an anthology is included on psychiatric, historical, and literary science case studies in which one chapter analyzes the metaphorical use of ‘madness’ as a description of the historical events. It presents small-scale studies from microeconomics on the impact of education, the autoethnography of cultural mourning, and a psychological experiment that examines social identity theory in relation to mutual rejection between Hindus and Muslims. As potential remedies, various forms of commemoration are examined, as they have evolved in India and in the diaspora over the last decade.
Rebecca Haw Allensworth (Vanderbilt Law) argues that the legal services regulatory scheme perversely both over- and under-regulates the legal services marketplace – licensing too few lawyers on the front end and then, on the back end, taking insufficient steps to ensure adequate quality. According to Allensworth, the current system of lawyer regulation bars nonlawyer providers from the system and simultaneously shunts the lowest-quality lawyers into the system’s lower precincts, where the consequences of poor representation are most sharply felt. Allensworth’s lightning bolt of a chapter shows that the challenge of regulatory reform is not just opening the system to new providers but also rethinking how to allocate – and police – the providers already there.
Shifts in food acquisition during the COVID-19 pandemic may have affected diet. Assessing changes in diet is needed to inform food assistance programs aimed at mitigating diet disparities during future crises. This longitudinal study assessed changes in diet among a low-income, racially diverse population from March-November 2020.
Methods
Survey data were collected from 291 adults living in Austin, TX. Multivariable ordinal logistic regression models assessed the relationship between changes in consumption of fresh, frozen, and canned fruits and vegetables (FV), and sugar-sweetened beverages (SSBs) and the following food acquisition factors: food security, difficulty finding food, food bank usage, and food shopping method.
Results
Adjusted models indicated individuals with consistent food insecurity had increased odds of reporting a higher category of consumption for frozen (aOR = 2.13, P < 0.05, CI:1.18-3.85) and canned (aOR = 4.04, P < 0.01, CI:2.27-7.20) FV and SSB (aOR = 3.01, P < 0.01, CI:1.65-5.51). Individuals who reported using a food bank were more likely to report increased consumption of frozen (aOR = 2.14, P < 0.05, CI:1.22-3.76) and canned FV (aOR = 2.91, P < 0.01, CI:1.69-4.99).
Conclusions
Shifts in food acquisition factors were associated with changes in diet. Findings demonstrate the need for more robust food assistance programs that specifically focus on all dimensions of food security.
Decentralized research has many advantages; however, little is known about the representativeness of a source population in decentralized studies. We recruited participants aged 18-64 years from four states from June to December 2022 for a prospective cohort study to assess viral epidemiology. Our aim was to determine the association between age, gender, race/ethnicity, rurality, and socioeconomic status (SES) on study participation in a decentralized prospective cohort study.
Methods:
We consented 9,286 participants from 231,099 (4.0%) adults with the mean age of 45.6 years (±12.0). We used an electronic decentralized approach for recruitment. Consented participants were more likely to be non-Hispanic White, female, older, urban residents, have more health conditions, and possessed higher socioeconomic status (SES) compared to those non-consented.
Results:
We observed an interaction between SES and race-ethnicity on the odds of consent (P = 0.006). Specifically, SES did not affect non-Hispanic white participation rates(OR 1.24 95% CI 1.16 – 1.32] for the highest SES quartile compared to those with the lowest SES quartile) as much as it did participants combined across the other races (OR 1.73; 95% CI 1.45 – 2.98])
Conclusion:
The relationship between SES and consent rates might be disproportionately greater in historically disadvantaged groups, compared to non-Hispanic White. It suggests that instead of focusing on enrollment of specific minority groups in research, there is value in future research exploring and addressing the diversity of barriers to trials within minority groups. Our study highlights that decentralized studies need to address social determinants of health, especially in under-resourced populations.
In Michigan, the COVID-19 pandemic severely impacted Black and Latinx communities. These communities experienced higher rates of exposure, hospitalizations, and deaths compared to Whites. We examine the impact of the pandemic and reasons for the higher burden on communities of color from the perspectives of Black and Latinx community members across four Michigan counties and discuss recommendations to better prepare for future public health emergencies.
Methods:
Using a community-based participatory research approach, we conducted semi-structured interviews (n = 40) with Black and Latinx individuals across the four counties. Interviews focused on knowledge related to the pandemic, the impact of the pandemic on their lives, sources of information, attitudes toward vaccination and participation in vaccine trials, and perspectives on the pandemic’s higher impact on communities of color.
Results:
Participants reported overwhelming effects of the pandemic in terms of worsened physical and mental health, financial difficulties, and lifestyle changes. They also reported some unexpected positive effects. They expressed awareness of the disproportionate burden among Black and Latinx populations and attributed this to a wide range of disparities in Social Determinants of Health. These included racism and systemic inequities, lack of access to information and language support, cultural practices, medical mistrust, and varied individual responses to the pandemic.
Conclusion:
Examining perspectives and experiences of those most impacted by the pandemic is essential for preparing for and effectively responding to public health emergencies in the future. Public health messaging and crisis response strategies must acknowledge the concerns and cultural needs of underrepresented populations.
The aim of this study was to explore the associations between diet quality, socio-demographic measures, smoking, and weight status in a large, cross-sectional cohort of adults living in Yorkshire and Humber, UK. Data from 43, 023 participants aged over 16 years in the Yorkshire Health Survey, 2nd wave (2013–2015) were collected on diet quality, socio-demographic measures, smoking, and weight status. Diet quality was assessed using a brief, validated tool. Associations between these variables were assessed using multiple regression methods. Split-sample cross-validation was utilised to establish model portability. Observed patterns in the sample showed that the greatest substantive differences in diet quality were between females and males (3.94 points; P < 0.001) and non-smokers vs smokers (4.24 points; P < 0.001), with higher diet quality scores observed in females and non-smokers. Deprivation, employment status, age, and weight status categories were also associated with diet quality. Greater diet quality scores were observed in those with lower levels of deprivation, those engaged in sedentary occupations, older people, and those in a healthy weight category. Cross-validation procedures revealed that the model exhibited good transferability properties. Inequalities in patterns of diet quality in the cohort were consistent with those indicated by the findings of other observational studies. The findings indicate population subgroups that are at higher risk of dietary-related ill health due to poor quality diet and provide evidence for the design of targeted national policy and interventions to prevent dietary-related ill health in these groups. The findings support further research exploring inequalities in diet quality in the population.
Underrepresentation of people from racial and ethnic minoritized groups in clinical trials threatens external validity of clinical and translational science, diminishes uptake of innovations into practice, and restricts access to the potential benefits of participation. Despite efforts to increase diversity in clinical trials, children and adults from Latino backgrounds remain underrepresented. Quality improvement concepts, strategies, and tools demonstrate promise in enhancing recruitment and enrollment in clinical trials. To demonstrate this promise, we draw upon our team’s experience conducting a randomized clinical trial that tests three behavioral interventions designed to promote equity in language and social-emotional skill acquisition among Latino parent–infant dyads from under-resourced communities. The recruitment activities took place during the COVID-19 pandemic, which intensified the need for responsive strategies and procedures. We used the Model for Improvement to achieve our recruitment goals. Across study stages, we engaged strategies such as (1) intentional team formation, (2) participatory approaches to setting goals, monitoring achievement, selecting change strategies, and (3) small iterative tests that informed additional efforts. These strategies helped our team overcome several barriers. These strategies may help other researchers apply quality improvement tools to increase participation in clinical and translational research among people from minoritized groups.
Studies using the dietary inflammatory index often perform complete case analyses (CCA) to handle missing data, which may reduce the sample size and increase the risk of bias. Furthermore, population-level socio-economic differences in the energy-adjusted dietary inflammatory index (E-DII) have not been recently studied. Therefore, we aimed to describe socio-demographic differences in E-DII scores among American adults and compare the results using two statistical approaches for handling missing data, i.e. CCA and multiple imputation (MI).
Design:
Cross-sectional analysis. E-DII scores were computed using a 24-hour dietary recall. Linear regression was used to compare the E-DII scores by age, sex, race/ethnicity, education and income using both CCA and MI.
Setting:
USA.
Participants:
This study included 34 547 non-Hispanic White, non-Hispanic Black and Hispanic adults aged ≥ 20 years from the 2005–2018 National Health and Nutrition Examination Survey.
Results:
The MI and CCA subpopulations comprised 34 547 and 23 955 participants, respectively. Overall, 57 % of the American adults reported 24-hour dietary intakes associated with inflammation. Both methods showed similar patterns wherein 24-hour dietary intakes associated with high inflammation were commonly reported among males, younger adults, non-Hispanic Black adults and those with lower education or income. Differences in point estimates between CCA and MI were mostly modest at ≤ 20 %.
Conclusions:
The two approaches for handling missing data produced comparable point estimates and 95 % CI. Differences in the E-DII scores by age, sex, race/ethnicity, education and income suggest that socio-economic disparities in health may be partially explained by the inflammatory potential of diet.
The objective was to examine associations between social jetlag and diet quality among young adults in the US using nationally representative data from the 2017–2018 NHANES survey, and evaluate effect modification by gender and race/ethnicity. Social jetlag was considered ≥2-hour difference in sleep midpoint (median of bedtime and wake time) between weekends and weekdays. Diet quality was assessed with the Healthy Eating Index (HEI)-2015 and its 13 dietary components. Ordinal logistic models were run with diet scores binned into tertiles as the outcome. Models accounted for potential confounders and survey weights. Effect modification by gender and race/ethnicity was examined. The study sample included 1,356 adults aged 20–39 years. 31% of young adults had social jetlag. Overall, there were no associations between social jetlag and diet quality. However, interaction analysis revealed several associations were race-specific (P, interaction<0.05). Among Black adults, social jetlag was associated with lower overall diet quality (OR = 0.4, 95% CI 0.2, 0.8; i.e. less likely to be in higher diet quality tertiles) and more unfavourable scores on Total Vegetables (OR = 0.6, 95% CI 0.3, 1.0) and Added Sugar (i.e. OR = 0.6, 95% CI 0.4, 0.9). For Hispanic adults, social jetlag was associated with worse scores for Sodium (OR = 0.6, 95% CI 0.4, 0.9) However, White adults with social jetlag had better scores of Greens and Beans (OR = 1.9, 95% CI 1.1, 3.2). Within a nationally representative sample of US young adults, social jetlag was related to certain indicators of lower diet quality among Black and Hispanic Americans.
This chapter describes the principles of the lifecourse perspective and its potential for examining the origins of health and disease (DOHaD). DOHaD research, framed by a lifecourse perspective, accounts for how experiences ’get under the skin’ by influencing biological functions during developmental windows of opportunity, transforming lifecourse trajectories, and affecting intergenerational health patterns. We go on to investigate how exposures and experiences influence different individuals in different ways, with some more vulnerable or susceptible to risk than others, resulting in significant variability in developmental outcomes. Yet, even when taking differential susceptibility into account, there are cross-cutting themes in research focusing on a wide range of disease outcomes in adulthood. These include socio-economic disadvantage and early adverse experiences, which result in a generalised susceptibility to risk. We conclude with a discussion on the limitations of current work in this field, and future directions and priorities for research, including more integrated, multidisciplinary approaches and longitudinal research designs, as well as more sophisticated statistical methods of analysis that move beyond correlational methods and simple causal models.
Disparities in CHD outcomes exist across the lifespan. However, less is known about disparities for patients with CHD admitted to neonatal ICU. We sought to identify sociodemographic disparities in neonatal ICU admissions among neonates born with cyanotic CHD.
Materials & Methods:
Annual natality files from the US National Center for Health Statistics for years 2009–2018 were obtained. For each neonate, we identified sex, birthweight, pre-term birth, presence of cyanotic CHD, and neonatal ICU admission at time of birth, as well as maternal age, race, ethnicity, comorbidities/risk factors, trimester at start of prenatal care, educational attainment, and two measures of socio-economic status (Special Supplemental Nutrition Program for Women, Infants, and Children [WIC] status and insurance type). Multivariable logistic regression models were fit to determine the association of maternal socio-economic status with neonatal ICU admission. A covariate for race/ethnicity was then added to each model to determine if race/ethnicity attenuate the relationship between socio-economic status and neonatal ICU admission.
Results:
Of 22,373 neonates born with cyanotic CHD, 77.2% had a neonatal ICU admission. Receipt of WIC benefits was associated with higher odds of neonatal ICU admission (adjusted odds ratio [aOR] 1.20, 95% CI 1.1–1.29, p < 0.01). Neonates born to non-Hispanic Black mothers had increased odds of neonatal ICU admission (aOR 1.20, 95% CI 1.07–1.35, p < 0.01), whereas neonates born to Hispanic mothers were at lower odds of neonatal ICU admission (aOR 0.84, 95% CI 0.76–0.93, p < 0.01).
Conclusion:
Maternal Black race and low socio-economic status are associated with increased risk of neonatal ICU admission for neonates born with cyanotic CHD. Further work is needed to identify the underlying causes of these disparities.
Prior research indicates that neighbourhood disadvantage increases dementia risk. There is, however, inconclusive evidence on the relationship between nativity and cognitive impairment. To our knowledge, our study is the first to analyse how nativity and neighbourhood interact to influence dementia risk.
Methods
Ten years of prospective cohort data (2011–2020) were retrieved from the National Health and Aging Trends Study, a nationally representative sample of 5,362 U.S. older adults aged 65+. Cox regression analysed time to dementia diagnosis using nativity status (foreign- or native-born) and composite scores for neighbourhood physical disorder (litter, graffiti and vacancies) and social cohesion (know, help and trust each other), after applying sampling weights and imputing missing data.
Results
In a weighted sample representing 26.9 million older adults, about 9.5% (n = 2.5 million) identified as foreign-born and 24.4% (n = 6.5 million) had an incident dementia diagnosis. Average baseline neighbourhood physical disorder was 0.19 (range 0–9), and baseline social cohesion was 4.28 (range 0–6). Baseline neighbourhood physical disorder was significantly higher among foreign-born (mean = 0.28) compared to native-born (mean = 0.18) older adults (t = −2.4, p = .02). Baseline neighbourhood social cohesion was significantly lower for foreign-born (mean = 3.57) compared to native-born (mean = 4.33) older adults (t = 5.5, p < .001). After adjusting for sociodemographic, health and neighbourhood variables, foreign-born older adults had a 51% significantly higher dementia risk (adjusted hazard ratio = 1.51, 95% CI = 1.19–1.90, p < .01). There were no significant interactions for nativity with neighbourhood physical disorder or social cohesion.
Conclusions
Our findings suggest that foreign-born older adults have higher neighbourhood physical disorder and lower social cohesion compared to native-born older adults. Despite the higher dementia risk, we observed for foreign-born older adults, and this relationship was not moderated by either neighbourhood physical disorder or social cohesion. Further research is needed to understand what factors are contributing to elevated dementia risk among foreign-born older adults.
Despite federal regulations mandating the inclusion of underrepresented groups in research, recruiting diverse participants remains challenging. Identifying and implementing solutions to recruitment barriers in real time might increase the participation of underrepresented groups. Hence, the present study created a comprehensive dashboard of barriers to research participation. Barriers to participation were recorded in real time for prospective participants. Overall, 230 prospective participants expressed interest in the study but were unable to join due to one or more barriers. Awareness of the most common obstacles to research in real time will give researchers valuable data to meaningfully modify recruitment methods.
Cervical cancer is a disease of inequity. Ethnic minorities – regardless of where they live – are screened less often, diagnosed later, and die more often from this preventable cancer. While most cervical cancer deaths happen in lower-income countries, persons with cervixes are increasingly dying in marginalized communities within higher-income countries. In these parts of the world, preventing and treating cervical cancer is considered a privilege rather than a right – a lofty ideal rather than a budget staple. The COVID-19 pandemic only exacerbated disparities in cervical cancer prevention and care, as fighting this illness took priority over issues like cervical screening and HPV vaccination. The pandemic laid bare the fragile state of women’s reproductive health care: how easily it could be disrupted by global public health emergencies. And yet, until global citizens call attention to worldwide political and financial disparities, it’s clear that geography, skin color, and the most emergent global health priority will continue to foster a wholly unacceptable rate of death by cervical cancer.