A Scoping Review of Social Determinants of Health and Pain Outcomes in Sickle Cell Disease.

BACKGROUND: Sickle cell disease (SCD) is a hereditary blood disorder with chronic pain that affects over 100,000 people in the United States. Previous research suggests a complex interaction between SCD pain outcomes and social determinants of health (SDOH). OBJECTIVE: To explore the impact of SDOH on pain outcomes in SCD. DESIGN: We used a scoping review design to explore the broad topic of social factors that affect SCD pain. DATA SOURCES: We searched the PubMed/MEDLINE, CINAHL, and Embase databases using combined search and Medical Subject Headings terms ("social determinants of health," "sickle cell," and "pain"). REVIEW METHODS: We used a content analysis with a summative approach to identify and describe interactions between SDOH and SCD pain outcomes. FINDINGS: Eight articles reporting studies with 7,992 total participants and a focus on SCD pain outcomes met the inclusion criteria. Three themes related to SDOH and pain were produced: education and employment, social and emotional functioning, and healthcare access. CONCLUSION: The key findings highlight the complex interplay between socioeconomic, psychological, and biological factors in SCD pain experiences. This underscores the need for nursing care to consider SDOH in an integrated, holistic approach to SCD pain. IMPLICATIONS FOR NURSING: To improve pain management among their SCD patients, nurses can assess pain holistically, develop customized individual pain management plans with educational and health literacy support options, and strengthen social support.

Native Hawaiian and Pacific Islanders' Identity and Housing Status: The Impact on Historical Trauma and Perceived Stress.

Native Hawaiian and Pacific Islanders (NHPIs) are overrepresented in Hawai'i's houseless population. Indigenous populations, such as NHPIs, may encounter experiences of historical trauma that impact their well-being. This original research project examines how NHPI identity and houselessness compound to affect the perceived stress and historical trauma of transition-aged youth. Fifty-one participants aged 18 to 24 (M = 21.37, SD = 1.93) completed a survey that included the historical traumatic events scale, historical loss scale, perceived stress scale, and a demographic questionnaire. Over half (n = 26, 51.0%) of the participants identified as NHPI. A two-way ANOVA indicated a non-significant effect of NHPI identity and housing status on perceived stress. However, housed participants scored significantly higher than participants experiencing houselessness on the historical traumatic events scale (p = 0.006). Our findings elucidate the role of knowledge in the experience of historical trauma. Further results, limitations, and future directions are offered.

Decrease in Socioeconomic Disparities in Self-Rated Oral Health among Brazilian Adults between 2013 and 2019: Results from the National Health Survey.

This cross-sectional study assessed the magnitude of inequalities in self-rated oral health (SROH) among different socioeconomic groups in Brazil. Secondary data from interviews with a sample of adults (≥18 years) from the national health survey 2013 (n = 64,308) and 2019 (n = 88,531) were analyzed. Positive SROH was considered when participants selected the good or very good options. Socioeconomic indicators were monthly household income and years of education. The magnitude of inequalities among socioeconomic groups was estimated using the Slope (SII) and Relative Index of Inequality (RII). Interaction term assessed changes in SII/RII over time. Estimates were adjusted for sex and age. The prevalence of SROH was 67.50% in 2013 and 69.68% in 2019. Individuals with lower socioeconomic indicators had a lower prevalence of positive SROH. Significant reductions in the magnitude of the education-based RII between 2013 (1.58) and 2019 (1.48) in Brazil, as well as in north (1.70; 1.45) and northeast (1.50; 1.41) regions and reduction in the income-based RII in the north (1.71; 1.51) were observed. Socioeconomic inequalities in SROH persist across different Brazilian regions, although there was a reduction in disparities among education groups in 2019 compared with 2013. The findings of this study suggest that equitable Brazilian oral health policies may have contributed to reducing SROH inequality over time.

[We must not remain blind to equity: lessons to be learned from the COVID-19 pandemic in the AmericasDeixar de ignorar a equidade: lições a aprender com a pandemia de COVID-19 nas Américas]. / No seguir ciegos a la equidad: lecciones por aprender de la pandemia de COVID-19 en las Américas.

The Region of the Americas has historically experienced social inequalities rooted in colonialism, which are reflected and reproduced in the area of health. The COVID-19 pandemic affected the entire Region, but the most socially disadvantaged groups were hit hardest, intensifying health inequities. Under the premise that pandemics are not socially neutral phenomena, this special report analyzes the unequal impacts of the pandemic from different perspectives: historical, epidemiological, political, social, economic, environmental, and population-related. Critical reflections are offered here on the negative impacts of inequalities on well-being, not only in the most affected populations, but across society as a whole. Strategic recommendations are made for progress toward health equity in the post-pandemic context. This report highlights the importance of advancing toward mature information systems to monitor health equity, developing more resilient health systems, and implementing explicit policies and practices aimed at eliminating health inequities. All of this should pave the way for prosperity and sustainable development in the Region.

Historicamente, a Região das Américas vivencia desigualdades sociais enraizadas no colonialismo, que estão refletidas e se reproduzem no campo da saúde. A pandemia de COVID-19 afetou toda a Região, mas atingiu com mais força os grupos mais desfavorecidos do ponto de vista social, agravando as iniquidades em saúde. Sob a premissa de que as pandemias não são fenômenos neutros em termos sociais, este relatório especial analisa os impactos desiguais da pandemia a partir de diferentes perspectivas: histórica, epidemiológica, política, social, econômica, ambiental e populacional. São apresentadas reflexões críticas sobre as implicações negativas das desigualdades para o bem-estar, não apenas das populações mais afetadas, mas da sociedade como um todo. Conclui-se com recomendações estratégicas para avançar em direção à equidade em saúde no cenário pós-pandemia. Destaca-se a importância de avançar na maturidade dos sistemas de informação para monitorar a equidade em saúde, a resiliência dos sistemas de saúde e a implementação de políticas e práticas explícitas voltadas para a eliminação das iniquidades em saúde. Espera-se que os pontos mencionados abram caminho para a prosperidade e o desenvolvimento sustentável na Região.

Does sexual rehabilitation work for gay and bisexual prostate cancer patients? Acceptability, feasibility, and efficacy results from the Restore-2 randomized controlled trial.

PURPOSE: Sexual minority prostate cancer patients have worse health-related quality of life outcomes than heterosexual patients. We conducted the first study to test whether sexual and urinary rehabilitation tailored for sexual minority patients was acceptable, feasible, and efficacious at improving their sexual and urinary function. METHODS: Restore-2 was a 24-month randomized controlled trial of an online biopsychobehavioral rehabilitation study for sexual minority men treated for prostate cancer experiencing sexual and/or urinary problems. Participants were 401 US sexual minority men treated for prostate cancer and experiencing sexual and/or urinary problems at baseline. Intervention components included phosphodiesterase-5 inhibitors, sexual aids, a pelvic floor exercise regimen and video, a guide to good gay sex following treatment, and coaching. Quality of life assessments were completed at baseline, 3, 6, 12, 18, and 24 months. RESULTS: We confirmed good acceptability and feasibility, but only minimal improvement was observed over time and no differences were found between treatment and control arms. CONCLUSIONS: We found no evidence that the intervention improved sexual or urinary outcomes for participants. However, we confirmed excellent acceptability and feasibility for a sexual rehabilitation program tailored to sexual minority participants. In addition, participants reported enduring usage and acceptability of sexual aids (including vacuum pump, anal dilators, and penile constriction rings) as well as masturbation and pelvic floor exercises to accommodate their sexual challenges. IMPLICATIONS FOR CANCER SURVIVORS: Sexual "accommodation," rather than "rehabilitation," may be a more accurate and realistic goal for this population. Patients should be provided sexual aids to help accommodate their sexual and urinary challenges. TRIAL REGISTRATION: This study was retrospectively registered with ClinicalTrials.gov, study number: NCT03923582; date: 22/04/2019.

Factors Associated with HIV Pre-Exposure Prophylaxis Use Among Transmasculine People Who Have Sex with Cisgender Men, at a Federally Qualified Health Center in Chicago, Illinois.

Transmasculine individuals who have sex with cisgender men (TMSM) remain an understudied population regarding pre-exposure prophylaxis (PrEP). We used electronic medical record data to assess PrEP eligibility and initiation in TMSM in a large LGBTQ+ focused federally qualified health center in Chicago, Illinois. We examined a sample of 430 TMSM from January 1, 2015 to December 31, 2019, and used logistic regression to model PrEP eligibility and initiation. Overall, 37% of participants were eligible for and 18% initiated PrEP. Eligibility was not associated with initiation. National PrEP guidance should be tailored to include transmasculine people.

Disparities in perioperative mortality outcomes between First Nations and non-First Nations peoples in Australia: protocol for a systematic review and planned meta-analysis.

BACKGROUND: Health inequities persist among First Nations people living in developed countries. Surgical care is pivotal in addressing a significant portion of the global disease burden. Evidence regarding surgical outcomes among First Nations people in Australia is limited. The perioperative mortality rate (POMR) indicates timely access to safe surgery and predicts long-term survival after major surgery. This systematic review will examine POMR among First Nations and non-First Nations peoples in Australia. METHODS: A systematic search strategy using MEDLINE, Embase, Emcare, Global Health, and Scopus will identify studies that include First Nations people and non-First Nations people who underwent a surgical intervention under anaesthesia in Australia. The primary focus will be on documenting perioperative mortality outcomes. Title and abstract screening and full-text review will be conducted by independent reviewers, followed by data extraction and bias assessment using the ROBINS-E tool. Meta-analysis will be considered if there is sufficient homogeneity between studies. The quality of cumulative evidence will be evaluated following the Grading of Recommendations, Assessment, Development and Evaluation (GRADE) criteria. DISCUSSION: This protocol describes the comprehensive methodology for the proposed systematic review. Evaluating disparities in perioperative mortality rates between First Nations and non-First Nations people remains essential in shaping the discourse surrounding health equity, particularly in addressing the surgical burden of disease. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42021258970.

Describing the characteristics and symptom profile of a group of urban patients experiencing socioeconomic inequity and receiving palliative care: a descriptive exploratory analysis.

Background: Individuals experiencing socioeconomic inequity have worse health outcomes and face barriers to palliative and end-of-life care. There is a need to develop palliative care programs tailored to this underserved population. Objectives: To understand the characteristics and symptom profiles of a group of urban patients experiencing socioeconomic inequity and receiving palliative care. Design: Descriptive exploratory analysis of a patient dataset. The patient dataset was generated through a pilot research study with patients experiencing socioeconomic inequity and life-limiting illness who received a community-based palliative care intervention. Methods: The intervention took place over 1 year in the Palliative Care Outreach and Advocacy Team, a community-based urban palliative care clinic in Edmonton, Alberta, Canada, serving persons experiencing socioeconomic inequity. Participants had to be at least 18 years of age, be able to communicate in English, require palliative care for a life-limiting illness, and be able to consent to inclusion in the study. Results: Twenty-five participants were enrolled. Participants predominantly identified as male and Indigenous, experienced poverty and housing instability, and had metastatic cancer. Our participants rated their pain, shortness of breath, and anxiety as more severe than the broader community-based palliative care population in the same city. Most patients died in inpatient hospices (73%). Conclusion: Our analysis provides an in-depth picture of an understudied, underserved population requiring palliative care. Given the higher symptom severity experienced by participants, our analysis highlights the importance of person-centered palliative care. We suggest that socioeconomic inequity should be considered in patients with life-limiting illnesses. Further research is needed to explore palliative care delivery to those facing socioeconomic inequity.

Mobilizing health equity through Computable Biomedical Knowledge (CBK): a call to action to the library, information sciences, and health informatics communities.

The twin pandemics of COVID-19 and structural racism brought into focus health disparities and disproportionate impacts of disease on communities of color. Health equity has subsequently emerged as a priority. Recognizing that the future of health care will be informed by advanced information technologies including artificial intelligence (AI), machine learning, and algorithmic applications, the authors argue that to advance towards states of improved health equity, health information professionals need to engage in and encourage the conduct of research at the intersections of health equity, health disparities, and computational biomedical knowledge (CBK) applications. Recommendations are provided with a means to engage in this mobilization effort.

Global burden of young-onset Alzheimer's disease and other dementias: a secondary analysis of the global burden of disease study, 2019.

The aging of the world population has led to an increase in the epidemiology and burden of Alzheimer's disease and other dementias. Objective: To describe the global burden of young-onset Alzheimer's disease and other dementias by world region and income through a secondary analysis of the Global Burden of Disease Study 2019. Methods: This is a descriptive cross-sectional ecological study. Data by sex and five-year age groups from 40 to 64 years were extracted from the Global Burden of Disease Study results tool. We performed a descriptive analysis of prevalence, incidence, deaths, disability-adjusted life years, years of life lost, and years lived with disability. Results: In 2019, young-onset Alzheimer's disease and other dementias presented a prevalence of 2.67 cases and an incidence of 0.44 per 1,000 inhabitants globally. It carried a significant burden, resulting in 1.16 disability-adjusted life years per 1,000 inhabitants, primarily due to years of life lost, and to a lesser extent due to years lived with disability. East Asia & the Pacific, Latin America & the Caribbean, and North America are the most affected regions. Burden rates are consistently higher among women; no gradient was observed by country income. Smoking was the most relevant risk factor, presenting a broad difference by country income level. Conclusion: The global burden of young-onset Alzheimer's disease and other dementias may reshape healthcare requirements and the societal impact of dementias, and its understanding is relevant to inform decisions related to service offerings and research agendas.

O envelhecimento da população mundial tem levado a um aumento da epidemiologia e da carga da Doença de Alzheimer e outras Demências. Objetivo: Descrever a Carga Global da Doença de Alzheimer de Início Precoce e outras Demências (DAIPoD) por região do mundo e nível de renda por meio de uma análise secundária do Estudo Global de Carga de Doenças (Global Burden of Disease Study ­ GBD), 2019. Métodos: Estudo ecológico transversal descritivo. Os dados de cinco anos por sexo e faixa etária de 40 a 64 anos foram extraídos da ferramenta de resultados do GBD. Realizou-se uma análise descritiva de prevalência, incidência, óbitos, Anos de Vida Ajustados por Incapacidade (Disability Adjusted Life Years ­ DALY), Anos de Vida Perdidos (Years of Life Lost ­ YLL) e Anos Vividos com Incapacidade (Years Lived with Disability ­ YLD). Resultados: Em 2019, a DAIPoD apresentou uma prevalência de 2,67 casos e uma incidência de 0,44 casos por 1.000. Foi observada uma carga significativa, resultando em 1,16 DALY por 1.000, principalmente devido aos YLL e, em menor grau, aos YLDs. As regiões mais afetadas foram o Leste Asiático e Pacífico, a América Latina e Caribe, e a América do Norte. As taxas de carga são consistentemente mais elevadas entre as mulheres; não foi observado um gradiente por nível de renda dos países. O tabagismo foi o fator de risco mais relevante, apresentando uma ampla diferença por nível de renda do país. Conclusão: A carga global do DAIPoD pode remodelar as necessidades de saúde e o impacto social das demências, e sua compreensão é relevante para informar decisões relacionadas à oferta de serviços e agendas de pesquisa.

Health disparity at the intersection of religion and caste: Evidence from India.

Objective: The provisions and recognition of Schedule Castes (SCs), the constitutional term for the Dalits in India, have been exclusively extended to Hindus, Buddhists, and Sikhs (HBS). Omission of Dalit Muslims and Christians (MC) from the SC category stripped them of the affirmative action benefits tied with the SC status. This study aimed to explore how such differential treatment might play a role in differential health outcomes in Dalit women in India. Methods: Drawing data on 177,346 Dalit women, aged 20 to 49 years, from two successive nationally representative surveys, we assessed the differential likelihood of hypertension and diabetes, between MC- and HBS- Dalit women. Accounting for birth cohort-, survey wave-, and state of residence- fixed effects, along with socioeconomic conditions and cardiometabolic risk factors, we obtained adjusted odds of having hypertension and diabetes in MC women. To check the validity of our results, we conducted similar analyses using data on 170,889 Scheduled Tribe (ST) women, another marginalized group, whose ST-status recognition were not tied to religion. Results: We found that Dalit MC women were 1.13 (95% CI: 1.03-1.25) and 1.19 (95% CI: 1.05-1.36) times more likely to have hypertension and diabetes, respectively, compared to Dalit HBS women. Conversely, no statistically significant differential likelihood of these conditions was observed between MC and HBS women in the ST sample. Conclusion: Our investigation thus, indicated a potential link at the crossroads of religion and caste that may contribute to the health disparities among marginalized women in India.

Sexual and Gender Minority Sleep Health Disparities and Minority Stress in Early Adolescence.

PURPOSE: Sleep is essential to adolescent development. Sexual and gender minority (SGM; e.g., lesbian, gay, bisexual, transgender) adults are at high risk for poor sleep, partially due to minority stress (e.g., discrimination). However, sleep has rarely been studied among SGM adolescents. In a national sample of early adolescents, we analyzed sexual minority (SM) and gender minority (GM) identity, gender incongruence, and gender nonconformity in association with sleep and tested minority and general stressors as mediators. METHODS: We cross-sectionally analyzed data from 10,070 adolescents aged 10-14 in the Adolescent Brain Cognitive Development℠ Study. Using logistic regression models, we analyzed associations between identity (SM and GM), sexual identity discrimination, minority and general stressors (sexual identity discrimination, teasing, and conflict with parents) and sleep health (duration, latency, and disturbance). We used Baron and Kenny's method to test for mediation. RESULTS: Participants reported sexual identity (4% SM, 4% questioning) and gender identity (0.4% GM, 0.6% questioning); 65% were White, 20% were Hispanic, and 52% were assigned male at birth. Compared to heterosexual, SM participants had higher odds of short sleep duration, long sleep latency, and sleep disturbance. GM participants and those reporting gender incongruence and nonconformity had higher odds of long sleep latency and sleep disturbance. Sexual identity discrimination and general social stressors partially mediated some associations. DISCUSSION: SGM participants reported poorer sleep. Minority and general social stressors partially accounted for some disparities. Policies need to address SGM identity-based discrimination and challenge social norms that produce minority stress for SGM early adolescents.

Analysis of eligibility criteria in Alzheimer's and related dementias clinical trials.

Overly restrictive clinical trial eligibility criteria can reduce generalizability, slow enrollment, and disproportionately exclude historically underrepresented populations. The eligibility criteria for 196 Alzheimer's Disease and Related Dementias (AD/ADRD) trials funded by the National Institute on Aging were analyzed to identify common criteria and their potential to disproportionately exclude participants by race/ethnicity. The trials were categorized by type (48 Phase I/II pharmacological, 7 Phase III/IV pharmacological, 128 non-pharmacological, 7 diagnostic, and 6 neuropsychiatric) and target population (51 AD/ADRD, 58 Mild Cognitive Impairment, 25 at-risk, and 62 cognitively normal). Eligibility criteria were coded into the following categories: Medical, Neurologic, Psychiatric, and Procedural. A literature search was conducted to describe the prevalence of disparities for eligibility criteria for African Americans/Black (AA/B), Hispanic/Latino (H/L), American Indian/Alaska Native (AI/AN) and Native Hawaiian/Pacific Islander (NH/PI) populations. The trials had a median of 15 criteria. The most frequent criterion were age cutoffs (87% of trials), specified neurologic (65%), and psychiatric disorders (61%). Underrepresented groups could be disproportionately excluded by 16 eligibility categories; 42% of trials specified English-speakers only in their criteria. Most trials (82%) contain poorly operationalized criteria (i.e., criteria not well defined that can have multiple interpretations/means of implementation) and criteria that may reduce racial/ethnic enrollment diversity.

Unintentional injury prevention in American Indian and Alaska Native communities: a scoping review of the Indian Health Service Primary Care Provider newsletter.

BACKGROUND: Unintentional injuries disproportionately impact American Indian and Alaska Native (AI/AN) populations. Developing effective and culturally tailored data collection and intervention programs requires an understanding of past prevention efforts in AI/AN communities, but limited peer-reviewed literature on the topic is available. This scoping review aims to summarize efforts that have been published in the Primary Care Provider newsletter, a source of gray literature available through the Indian Health Service. METHODS: The research team obtained all injury related articles in the Provider newsletter and excluded those that did not describe an unintentional injury prevention effort. Included articles were organized chronologically and by topic, and outcomes were described in a data abstraction form. RESULTS: A total of 247 articles from the Provider newsletter were screened, and 68 were included in this review. The most number of articles were published in 2007 (n = 15). Many focused not specifically on one tribal community but on the AI/AN community as a whole (n = 27), while others reported that certain tribes were the focus of study but did not identify tribes by name (n = 24). The following is a list of 14 tribal communities explicitly mentioned: Omaha, Cherokee, Ute, Yakama, Chippewa, Apache, Ho-Chunk, The Crow Tribe, Tohono O'odham Nation, Fort Mojave Tribe, Chemehuevi Tribe, The Rosebud Tribe, Navajo, and The Pueblo of Jemez. Published unintentional injury prevention efforts have covered the following 7 topics in AI/AN communities: falls, motor vehicle crashes, poisonings, improving data, burns, children, and other. CONCLUSION: This scoping review makes available and searchable information on injury prevention work conducted in and for AI/AN communities that is not currently found in the peer-reviewed literature.

Desigualdades sociais no diagnóstico do câncer do colo do útero no Brasil: um estudo de base hospitalar / Social inequalities in the diagnosis of cervical cancer in Brazil: a hospital-based study

Resumo O estudo visa analisar a prevalência de estadiamento avançado ao diagnóstico do câncer do colo do útero e sua associação com indicadores individuais e contextuais socioeconômicos e de oferta de serviços de saúde no Brasil. Estudo transversal, realizado com casos de câncer do colo do útero em mulheres de 18 a 99 anos, no período de 2006 a 2015, extraídos do Integrador de Registros Hospitalares de Câncer. Variáveis contextuais foram coletadas no Atlas do Desenvolvimento Humano, no Cadastro Nacional de Estabelecimentos de Saúde e no Sistema de Informações Ambulatoriais. Usou-se o modelo de regressão de Poisson multinível com intercepto aleatório. A prevalência de diagnóstico em estádio avançado foi de 48,4%, apresentando associação com idades mais avançadas (RP 1,06; IC 1,01-1,10), raça/cor da pele preta, parda e indígena (RP 1,04; IC 1,01-1,07), menores níveis de escolaridade (RP 1,28; IC 1,16-1,40), ausência de parceiro conjugal (RP 1,10; IC 1,07-1,13), encaminhamento do tipo público ao serviço de saúde (RP 1,07; IC 1,03-1,11) e menor taxa de realização de exame citopatológico (RP 1,08; IC 1,01-1,14). Os resultados reforçam a necessidade de melhorias no programa nacional de prevenção do câncer do colo do útero em áreas com baixa cobertura da citologia oncótica.

Abstract The scope of this study is to analyze the prevalence of advanced stage diagnosis of cervical cancer and its association with individual and contextual socioeconomic and healthcare service indicators in Brazil. A cross-sectional study was conducted using cervical cancer cases in women aged 18 to 99 years, from 2006 to 2015, extracted from the Hospital Cancer Registry (HCR) Integrator. Contextual variables were collected from the Atlas of Human Development in Brazil; the National Registry of Health Institutions (NRHI); and the Outpatient Information System. Multilevel Poisson Regression with random intercept was used. The prevalence of advanced stage diagnosis was 48.4%, revealing an association with older age groups (PR 1.06; CI 1.01-1.10), black, brown, and indigenous race/skin color (PR 1.04; CI 1.01-1.07), lower levels of schooling (PR 1.28; CI 1.16-1.40), no marital partner (PR 1.10; CI 1.07-1.13), public referral to the health service (PR 1.07; CI 1.03-1.11), and lower rates of cytological examination (PR 1.08; CI 1.01-1.14). The results reinforce the need for improvements in the national cervical cancer prevention program in areas with low coverage of oncotic cytology.

Evaluation of Reliability Between Race and Ethnicity Data Obtained from Self-report Versus Electronic Health Record.

INTRODUCTION: Disparities based on perceived race and ethnicity exist in all fields of medicine. Accurate data collection is crucial to addressing these disparities, yet few studies have evaluated the validity of data gathered. This study compares self-reported race and ethnicity data, considered the gold standard, with data documented in the electronic health record (EHR), to assess the validity of that data. METHODS: Data from self-reported questionnaires was collected from adolescents admitted to a psychiatric inpatient unit from February 2019 to July 2022. Demographic questionnaires were self-administered as part of a larger battery completed during the admission process. Data was compared to demographic information collected from the hospital's EHR for the same patients and time. RESULTS: In a sample of 1191 patients (ages 11-18, 61.9% female, 89% response rate), substantial agreement was observed for Hispanic ethnicity (κ = 0.64), while agreement for specific racial groups ranged from slight to substantial (κ = 0.10-0.63). In addition, it was noted that there was discrepancy between multiracial identification, with 17.1% of patients identifying as more than one race in self-reported data compared to 3.1% in EHR data. CONCLUSIONS: The findings from this data set highlight the need for caution when using EHR data to draw conclusions about health disparities. It also suggests that the method of data collection meaningfully influences the responses patients provide. Addressing these challenges is essential for advancing equitable healthcare and mitigating disparities among patients.

Caregivers with limited English proficiency: Satisfaction with primary pediatric healthcare.

With a growing 25.5 million people in the United States experiencing limited-English proficiency (LEP), there is a concern over these individuals' experiences in healthcare. Health outcomes of LEP status are well-documented for adults in hospitals; however, less is known about patient experience, pediatric populations, and primary care settings. This study investigated differences in caregiver satisfaction between families with and without LEP receiving healthcare for their child. A sample of 25,118 caregivers whose children from birth to 17 years had met with any healthcare providers in the past year was used. Analyses consisted of unpaired t-tests comparing mean satisfaction of LEP and English-proficient (EP) caregivers in the domains of how often primary healthcare providers spent enough time with the child, listened, provided specific information, demonstrated sensitivity to the family's values, and made the respondent feel like a partner. In all aspects of caregiver satisfaction, mean satisfaction scores were significantly lower for LEP caregivers than EP caregivers. The largest drops were seen in perceived time and sensitivity. These results highlight a need to ensure LEP families receive equitable and high-quality primary care services, ultimately building trust in the healthcare system and improving children's health and well-being.

Evaluation of regional variation in racial and ethnic differences in patient experience among Veterans Health Administration primary care users.

OBJECTIVE: To evaluate racial and ethnic differences in patient experience among VA primary care users at the Veterans Integrated Service Network (VISN) level. DATA SOURCE AND STUDY SETTING: We performed a secondary analysis of the VA Survey of Healthcare Experiences of Patients-Patient Centered Medical Home for fiscal years 2016-2019. STUDY DESIGN: We compared 28 patient experience measures (six each in the domains of access and care coordination, 16 in the domain of person-centered care) between minoritized racial and ethnic groups (American Indian or Alaska Native [AIAN], Asian, Black, Hispanic, Multi-Race, Native Hawaiian or Other Pacific Islander [NHOPI]) and White Veterans. We used weighted logistic regression to test differences between minoritized and White Veterans, controlling for age and gender. DATA COLLECTION/EXTRACTION METHODS: We defined meaningful difference as both statistically significant at two-tailed p < 0.05 with a relative difference ≥10% or ≤-10%. Within VISNs, we included tests of group differences with adequate power to detect meaningful relative differences from a minimum of five comparisons (domain agnostic) per VISN, and separately for a minimum of two for access and care coordination and four for person-centered care domains. We report differences as disparities/large disparities (relative difference ≥10%/≥ 25%), advantages (experience worse or better, respectively, than White patients), or equivalence. PRINCIPAL FINDINGS: Our analytic sample included 1,038,212 Veterans (0.6% AIAN, 1.4% Asian, 16.9% Black, 7.4% Hispanic, 0.8% Multi-Race, 0.8% NHOPI, 67.7% White). Across VISNs, the greatest proportion of comparisons indicated disparities for three of seven eligible VISNs for AIAN, 6/10 for Asian, 3/4 for Multi-Race, and 2/6 for NHOPI Veterans. The plurality of comparisons indicated advantages or equivalence for 17/18 eligible VISNs for Black and 12/14 for Hispanic Veterans. AIAN, Asian, Multi-Race, and NHOPI groups had more comparisons indicating disparities by VISN in the access domain than person-centered care and care coordination. CONCLUSIONS: We found meaningful differences in patient experience measures across VISNs for minoritized compared to White groups, especially for groups with lower population representation.

Evaluating the real-world implementation of the Family Nurse Partnership in England: a data linkage study.

Background/objectives: The Family Nurse Partnership is an intensive home visiting programme for adolescent mothers. We aimed to evaluate the effectiveness of the Family Nurse Partnership on outcomes up to age 7 using national administrative data. Design: We created a linked cohort of all mothers aged 13-19 using data from health, educational and children's social care and defined mothers enrolled in the Family Nurse Partnership or not using Family Nurse Partnership system data. Propensity scores were used to create matched groups for analysis. Setting: One hundred and thirty-six local authorities in England with active Family Nurse Partnership sites between 2010 and 2017. Participants: Mothers aged 13-19 at last menstrual period with live births between April 2010 and March 2019, living in a Family Nurse Partnership catchment area and their firstborn child(ren). Interventions: The Family Nurse Partnership includes up to 64 home visits by a family nurse from early pregnancy until the child's second birthday and is combined with usual health and social care. Controls received usual health and social care. Main outcome measures: Indicators of child maltreatment (hospital admissions for injury/maltreatment, referral to social care services); child health and development (hospital utilisation and education) outcomes and maternal hospital utilisation and educational outcomes up to 7 years following birth. Data sources: Family Nurse Partnership Information System, Hospital Episode Statistics, National Pupil Database. Results: Of 110,520 eligible mothers, 25,680 (23.2%) were enrolled in the Family Nurse Partnership. Enrolment rates varied across 122 sites (range: 11-68%). Areas with more eligible mothers had lower enrolment rates. Enrolment was higher among mothers aged 13-15 (52%), than 18-19 year-olds (21%). Indicators of child maltreatment: we found no evidence of an association between the Family Nurse Partnership and indicators of child maltreatment, except for an increased rate of unplanned admissions for maltreatment/injury-related diagnoses up to age 2 for children born to Family Nurse Partnership mothers (6.6% vs. 5.7%, relative risk 1.15; 95% confidence interval 1.07 to 1.24). Child health and developmental outcomes: there was weak evidence that children born to Family Nurse Partnership mothers were more likely to achieve a Good Level of Development at age 5 (57.5% vs. 55.4%, relative risk 1.05; 95% confidence interval 1.00 to 1.09). Maternal outcomes: There was some evidence that Family Nurse Partnership mothers were less likely to have a subsequent delivery within 18 months of the index birth (8.4% vs. 9.3%, relative risk 0.92; 95% confidence interval 0.88 to 0.97). Younger and more vulnerable mothers received higher numbers of visits and were more likely to achieve fidelity targets. Meeting the fidelity targets was associated with some outcomes. Limitations: Bias by indication and variation in the intervention and usual care over time and between areas may have limited our ability to detect effects. Multiple testing may have led to spurious, significant results. Conclusions: This study supports findings from evaluations of the Family Nurse Partnership showing no evidence of benefit for maltreatment outcomes measured in administrative data. Amongst all the outcomes measured, we found weak evidence that the Family Nurse Partnership was associated with improvements in child development at school entry, a reduction in rapid repeat pregnancies and evidence of increased healthcare-seeking in the mother and child. Future work: Future evaluations should capture better measures of Family Nurse Partnership interventions and usual care, more information on maternal risk factors and additional outcomes relating to maternal well-being. Study registration: The study is registered as NIHR CRN Portfolio (42900). Funding: This award was funded by the National Institute of Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: 17/99/19) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 11. See the NIHR Funding and Awards website for further award information.

The Family Nurse Partnership is an intensive home visiting service that offers first-time young mothers up to 64 visits with a family nurse from pregnancy to their child's second birthday. The Family Nurse Partnership aims to improve birth outcomes, child health and development and promote economic self-sufficiency among young mothers. Previous research in England found no differences in birthweight, maternal smoking, repeat pregnancies or accident and emergency attendances between mothers who did or did not take part in the Family Nurse Partnership. However, children in the Family Nurse Partnership group had better measures of development at school age. We aimed to add to the evidence from earlier studies, by using electronic records that are routinely collected as part of health, education and social care services, to compare outcomes for around 26,000 mothers enrolled in the Family Nurse Partnership between 2010 and 2019 with similar mothers who were not enrolled. This study showed that around one in four mothers who were eligible for the programme were enrolled in the Family Nurse Partnership, and family nurses gave priority to mothers who were younger, more deprived or who had other markers of vulnerability (e.g. a history of substance misuse violence, self-harm or mental health conditions). We found no evidence of a difference in indicators of child maltreatment between mothers who were enrolled in the Family Nurse Partnership and those who were not enrolled, but we found weak evidence to suggest that children born to mothers enrolled in the Family Nurse Partnership were more likely to achieve a Good Level of Development at school entry (age 5). We also saw that mothers enrolled in the Family Nurse Partnership were less likely than those who were not enrolled to have their next child within 18 months of their first child. More research is needed to understand which elements of intensive home visiting services work best, for whom and when. This will help inform decisions about whether it is better to offer highly intensive services for a small portion of the target population or to extend and enhance existing universal health visiting services to better support all adolescent mothers.

Differential Manifestations of Inflammatory Bowel Disease Based on Race and Immigration Status.

BACKGROUND AND AIMS: The prevalence of inflammatory bowel disease (IBD) is increasing globally. In this context, identifying risk factors for severe disease is important. We examined how race/ethnicity and immigration status influence IBD manifestations, treatments, and outcomes in a diverse, tertiary-care safety-net hospital. METHODS: We conducted a single-center retrospective review of all IBD inpatients and outpatients treated from 1997-2017. Using logistic regression modeling, we compared disease onset, treatment, and outcomes by race (White, Black, Hispanic, or Asian) and immigration status (US-born vs foreign-born). RESULTS: A total of 577 patients were identified, of which 29.8% were White, 27.4% were Hispanic, 21.7% were Black, and 13.0% were Asian. Compared to Whites, Asians were more likely to be male (odds ratio [OR] 2.63, 95% confidence interval [CI]: 1.45, 5.00), whereas Blacks were more likely to be diagnosed with Crohn's disease (OR 1.75, 95% CI: 1.10, 2.77) and more likely to undergo IBD-related intestinal resection (OR 2.49, 95% CI: 1.40, 4.50). Compared to US-born patients, foreign-born patients were more likely to be diagnosed with ulcerative colitis (OR 1.77, 95% CI: 1.04, 3.02). They were also less likely to be diagnosed before 16 years of age (OR 0.19, 95% CI: 0.08, 0.41), to have undergone intestinal resections (OR 0.39, 95% CI: 0.19, 0.83), to have received biologics (OR 0.43, 95% CI: 0.25, 0.76), or to have had dermatologic manifestations (OR 0.12, 95% CI: 0.03, 0.41). CONCLUSION: IBD phenotype varies by race, although foreign-born patients of all races show evidence of later-onset and milder disease. These findings may aid in disease prognostication and clinical management and, furthermore, may provide insight into intrinsic and environmental influences on IBD pathogenesis.