24 research outputs found
A Cross Cultural Perspective of Adherence for Racial/Ethnic Minority Women with HIV, Living in the United States
HIV persists as a global public health tragedy, as more than 36 million lives have been lost to HIV/AIDS. A diagnosis of HIV can be treated as a chronic disease, for those who adhere to their medication regimens and other health recommendations. However, for racial/ethnic minorities living in the United States, many of whom face a multitude of barriers, adherence to medications and medical appointments can be a challenge. For racial/ethnic minority women, specifically, gender roles, HIV stigma, racism, inconsistent access to healthcare, financial and food insecurity are just a few of the barriers they experience, which may interfere with their ability to adhere to medical treatment. For immigrant women, low language literacy, which is linked to health literacy, may further exacerbate these lives where staff and services provide culturally and linguistically competent services. This paper reports parts of a larger mixed-methods inquiry. The goal is part of larger study to develop an intervention for racial/ethnic minority women with HIV, living in the Southeastern region of the United States
Pills, PrEP, and Pals: Adherence, Stigma, Resilience, Faith and the Need to Connect Among Minority Women With HIV/AIDS in a US HIV Epicenter
Background: Ending HIV/AIDS in the United States requires tailored interventions. This study is part of a larger investigation to design mCARES, a mobile technology-based, adherence intervention for ethnic minority women with HIV (MWH).Objective: To understand barriers and facilitators of care adherence (treatment and appointment) for ethnic MWH; examine the relationship between these factors across three ethnic groups; and, explore the role of mobile technologies in care adherence.Methods: Cross-sectional, mixed-methods data were collected from a cohort of African-American, Hispanic-American and Haitian-American participants. Qualitative data were collected through a focus group (n = 8) to assess barriers and facilitators to care adherence. Quantitative data (n = 48) surveyed women on depressive symptomology (PHQ-9), HIV-related stigma (HSS) and resiliency (CD-RISC25). We examined the relationships between these factors and adherence to treatment and care and across groups.Findings: Qualitative analyses revealed that barriers to treatment and appointment adherence were caregiver-related stressors (25%) and structural issues (25%); routinization (30%) and religion/spirituality (30%) promoted adherence to treatment and care. Caregiver role was both a hindrance (25%) and promoter (20%) of adherence to treatment and appointments. Quantitatively, HIV-related stigma differed by ethnic group; Haitian-Americans endorsed the highest levels while African-Americans endorsed the lowest. Depression correlated to stigma (R = 0.534; p < 0.001) and resiliency (R = −0.486; p < 0.001). Across ethnic groups, higher depressive symptomology and stigma were related to viral non-suppression (p < 0.05)—a treatment adherence marker; higher resiliency was related to viral suppression. Among Hispanic-Americans, viral non-suppression was related to depression (p < 0.05), and among African-Americans, viral suppression was related to increased resiliency (p < 0.04).Conclusion: Multiple interrelated barriers to adherence were identified. These findings on ethnic group-specific differences underscore the importance of implementing culturally-competent interventions. While privacy and confidentiality were of concern, participants suggested additional intervention features and endorsed the use of mCARES as a strategy to improve adherence to treatment and appointments
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Digitized HIV/AIDS Treatment Adherence Interventions: A Review of Recent SMS/Texting Mobile Health Applications and Implications for Theory and Practice
Mobile health technologies (mHealth) are efficacious along the continuum of HIV/AIDS-from prevention of HIV transmission to those at the highest risk of acquiring infection, to adherence to HIV medical care, for those living with the disease-decreasing the public health burden of the disease. HIV/AIDS is a complex condition, as certain population subgroups are disproportionately affected. Furthermore, barriers experienced at the individual level (e.g., HIV stigma) and at the systems level (i.e., access to care) contribute to these disparities. Low cost, high penetration rates and ease of use mean mHealth SMS/texting solutions hold the biggest promise for curbing the global HIV/AIDS epidemic; yet these technologies have their own challenges. Our primary objective was to assess interventions that promote adherence, which are delivered via SMS/texting, and important design and ethical considerations of these technologies. Specifically, we evaluated the underlying frameworks underpinning intervention design, strategies to safeguard privacy and confidentiality, and measures taken to ensure equity and equitable access across different subgroups of persons living with HIV (PLWH). We also synthesized study outcomes, barriers/facilitators to adherence, and barriers/facilitators of technology to support HIV adherence.
A scoping review methodology was utilized, searching the Medline database for recently published articles (January 2017 to June 2019). Two reviewers independently screened titles and abstracts for relevancy using the following eligibility criteria: (a) original research or protocol; (b) inclusion of persons living with HIV; (c) intervention delivery via SMS/text messaging; and, (d) intervention included HIV care adherence.
Seven (7) of the 134 articles met full criteria. The great majority (n = 6) did not report whether the interventions were developed under established behavioral change models or frameworks. Strategies to address privacy, confidentiality and equity/equitable access were taken in four (
= 4) studies.
Our mixed methods review determined that privacy and confidentiality remain a concern for PLWH. Provisions to accommodate literacy, infrastructure, technology and other challenges (e.g., access to smartphones and Wifi) are important ethical considerations that guarantee equity and equitable access. Further investigation will determine the contexts within which theoretical models and frameworks remain relevant in the rapidly evolving field of digitized interventions that support adherence
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Abstract C023: Variations in clinical presentation and outcomes of rare ovarian cancers by race and nativity
Abstract Introduction: Disparities in the prevalence of disease, medical access, and survival rates have been well documented in women with epithelial ovarian cancer. Black women tend to develop more aggressive tumors and have worse overall survival. Aside from race, however, nativity (region of birth) has been associated with variations in treatment outcomes. There is a paucity of research specifically about rare ovarian cancer subtypes, including germ cell (GC) and stromal cell (SC) tumors. Our study aims to provide a comparative analysis of clinical presentation and outcomes among women of Caribbean and US origin with GC and SC tumors, stratified by race. Methods: Analyses were conducted using the Florida Cancer Data Service (FCDS), the statewide cancer registry. Women who were diagnosed with GC and SC ovarian cancer subtypes from 1987 to 2017 were identified, and categorized as either US-born (USB) White, USB Black, Caribbean-born (CB)White, or CB Black. Abstracted data included patient-level demographic data, treatment histories, and all-cause overall survival. Statistical analyses were performed using chi-square, ANOVA, log-rank test, and Kaplan-Meier method, with the threshold for statistical significance set at p < 0.05. Results: 691 women with GC and SC were identified. There was a significant difference in mean age at diagnosis by race and nativity. USB Black women were diagnosed at the youngest mean age (34.4 yr, SD 20.62), followed by USB White (38.6 yr, SD 20.97), CB Black (43.9 yr, SD 20.79), and CB White (45.9 yr, SD 18.66)(p=0.002). CB White patients had the highest utilization of Medicaid (23.5%), while CB Black had the highest proportion of uninsured patients (22.2%)(p<0.001). There were no differences in stage, tumor characteristics (grade, histology, lymph vascular invasion) or treatments (surgery, chemotherapy, radiation) administered among the groups. CB Black women had a much lower prevalence of smoking (2.8%) compared to the other subgroups (CB White 23.5%5; USB White 28.1%; USB Black 16.9%, p=0.003). There were no significant differences in median OS by race and nativity (USB White 184 months; USB Black USB 244 months; CB White 270 months; CB Black CB 204 months; log-rank p=0.8). Conclusion: Despite a younger age of diagnosis in USB versus CB women, and Black women vs White women, there were no differences in survival outcomes in women with GC and SC ovarian cancers, even when considering variations in insurance coverage and smoking histories. While the long survival is likely due to the natural history of these tumors, the variation in age at diagnosis suggests variable susceptibility to tumor initiation by race and place of birth. Citation Format: Maurice J. Chery, Alex P. Sanchez-Covarrubias, Sophia H.L. George, Matthew P. Schlumbrecht. Variations in clinical presentation and outcomes of rare ovarian cancers by race and nativity [abstract]. In: Proceedings of the 16th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2023 Sep 29-Oct 2;Orlando, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(12 Suppl):Abstract nr C023
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African Ancestry is Associated with Aggressive Endometrial Cancer
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Stress, Support, and Length of Diagnosis Among Women Living with HIV/AIDS in the Southern USA, During the COVID-19 Pandemic
Health-related challenges caused and worsened by the global COVID-19 pandemic have proven broad and multifaceted, particularly for racial/ethnic minority women living with HIV (WLWH). The 2020 pandemic has affected the wellbeing and access to care for WLWH in Southeastern Florida, a region that experienced simultaneous high rates of COVID-19 and HIV. WLWH, over a short- or long-term period, likely utilize different coping mechanisms as they face these challenges.
This analysis compared pandemic-related stress and support endorsed by participants attending an urban clinic in South Florida, from January through May 2021. Participants completed an adapted version of the Pandemic Stress Index (PSI). The items in the PSI assessed emotional distress, stigma, and support, and were dichotomized, as either "stress" or "support". Mann-Whitney
-test assessed differences in distributions of PSI scores (stress and support) comparing long-term survivors (≥10 years with an HIV diagnosis) to those more recently diagnosed (<10 years).
The cohort consisted of 63 WLWH, aged 21-71 (Mean = 42 years±12.95). The group of WLWH were almost evenly split, with 50.8% having been diagnosed in the last 10 years (short-term survivors). The high-stress group endorsed lower levels of support, compared to the low-stress group. There was a non-significant trend of higher stress scores for short-term survivors, compared to long-term survivors; and, higher support scores for long-term survivors, compared to short-term survivors.
Results suggest a trend in long-term survivor WLWH endorsing lower stress and higher support; the contrary was found for their short-term survivor counterparts. Patterns in COVID-19 related stressors and maladaptive behaviors need further exploration to establish suitable interventions that address disparities within groups of WLWH
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A Multilingual, Culturally Competent Mobile Health Intervention to Improve Treatment Adherence Among Women Living With HIV: Protocol for a Randomized Controlled Trial
Adherence to HIV care is complex, as barriers to care are multidimensional, particularly for ethnic minority women. Mobile health (mHealth) solutions are supportive in improving HIV health care outcomes. In the United States, however, mHealth interventions are not widely implemented in public HIV clinics and have not been customized for women. There is an unmet need for culturally and linguistically appropriate mHealth interventions that address the health care needs of minority women living with HIV.
This study aims to describe a protocol investigating the feasibility of an mHealth intervention for treatment adherence among women living with HIV. This is a two-phase, mixed methods, pilot randomized controlled trial that begins with qualitative patient interviews to inform the system design. Participants will be block randomized by language (English, Spanish, and Haitian Creole) to 1 of 2 study arms.
Women (age ≥18 years) who were followed up at the women's HIV clinic of an academic medical center, with a recent history of nonadherence to HIV care (missed appointments, unsuppressed viral load, or not taking medications as prescribed), will be enrolled. The experimental arm will receive the intervention, which includes health reminders and psychoeducational messaging, plus clinical standard of care reminders. The psychoeducational messaging will target patient-level barriers of HIV stigma and medical mistrust and resilience as a patient-level strength. The control arm will receive standard of care reminders only (ie, mailed appointments and automated telephone calls). All aspects of the study and intervention will be offered in the participants' preferred language. The primary outcome is the feasibility and acceptability of the study. The secondary outcomes are changes in self-reported medication adherence, depression symptoms, HIV stigma, medical mistrust, resilience, and clinic attendance and viral suppression extracted from the participants' medical records. Data will be assessed at baseline (T0) and 2 subsequent clinic visits-approximately 3 to 4 months from the baseline (time 1; T1) and 6 to 9 months from the baseline (time 2; T2). Qualitative data will be transcribed and analyzed iteratively. Bivariate analyses will compare data by the study group (chi-square, odds ratios, and t tests). Exploratory analyses will be conducted for each outcome variable-T1 and T2 values will be compared with values at T0 by the study group.
As of March 2020, baseline quantitative data were collected on 54 participants (28 English speakers, 14 Spanish speakers, and 12 Haitian Creole speakers). The first 3 focus groups (1 in each of the 3 languages) were completed, with a total of 20 participants. The findings are currently being integrated into the beta version of the mHealth texting system.
The findings of this novel HIV adherence intervention may shed light on the barriers and facilitators of HIV health care and the mechanisms of an mHealth intervention that is customized for ethnic minority women living with HIV.
ClinicalTrials.gov NCT03738410; https://clinicaltrials.gov/ct2/show/NCT03738410.
DERR1-10.2196/17656
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Abstract C052: Endometrial cancer genomics varies by race
Abstract Introduction Variability in endometrial cancer (EC) risk and outcomes exist, with Black women disproportionately negatively affected related to White women. The biologic etiologies of these observations are poorly understood. Our objective was to describe the somatic mutations of the tumor genome and compare them to RNA expression in self-identified Black and White women diagnosed with EC. Methods Women with newly diagnosed EC and undergoing hysterectomy were recruited prospectively. Fresh tumors obtained at the time of surgery were flash-frozen, underwent DNA and RNA extraction and were submitted for whole exome sequencing (WES) analysis (DNA) or bulk RNA sequencing analysis. Differentially expressed genes between racial groups and tumor grade were calculated using Deseq2. Genomic ancestry was determined using ADMIXTURE. Chi-square and Mann Whitney U tests were used for analyses, with a threshold for significance of p14% African ancestry. The remaining 13 (26.5%) patients had admixed European and Native American ancestry, with <1% African ancestry. In the RNA-seq, we found significant DEGs by tumor grade; with 2132 DEG in High grade compared to Low grade tumors with a false discovery rate of <0.05 and a fold change (FC) of ≤-1.5 or ≥1.5. Top 10 DEG included MT4, TAF15, SLFN5 and PLEKHS1 (upregulated) and MCRIP1, MAZ, MYOM3, PRPH, BCL7C, AC016700.5 (downregulated). In the WES analysis, 8 Black women had mutations in GON4L compared to 1 in the White woman (44.4% vs 3.7%, padj=0.04); and 7 Black women had a mutation in PRAMEF14 compared to 1 White woman (38.8% vs 3.7%, padj= 0.06). Conclusion GON4L, which is a transcription factor associated with decreased apoptosis and promotion of tumor growth through CD24 regulation, was significantly more mutated in the EC genome of Black women relative to White women. Somatic mutation and transcriptional changes are seen between tumor grade and self-identified race and require further exploration for its relationship to aggressive disease. Citation Format: Alex P. Sanchez-Covarrubias, Ramlogan Sowamber, Leah Dodds, Andre Pinto, Sophia George, Matthew Schlumbrecht. Endometrial cancer genomics varies by race [abstract]. In: Proceedings of the 15th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2022 Sep 16-19; Philadelphia, PA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2022;31(1 Suppl):Abstract nr C052
Adverse events after SARS-CoV-2 vaccination in solid organ transplant recipients: A systematic review
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Abstract PO-201: African ancestry predicts serous and copy number high endometrial cancer
Abstract Introduction: Endometrial cancer (EC) is the leading gynecologic malignancy in the United States. Histologic classification is binary, with type I, low-grade tumors being exclusively endometrioid and type II, high-grade tumors inclusive of aggressive histologies like serous carcinoma. Molecular classification defines EC as POLE ultra-mutated, microsatellite instability (MSI), copy number low (CNL) and copy number high (CNH). Relative to White women, Black women have a higher risk of serous/CNH EC with worse overall survival. We aimed to understand whether self-identified race and genetic ancestry are associated with the probability of developing serous/CNH tumors among women diagnosed with EC. Methods: We reviewed tumor genomic data from The Cancer Genome Atlas (TCGA) and The Cancer Genetic Ancestry Atlas (TCGAA) under the project Uterine Corpus Endometrial Carcinoma. We merged both datasets matching the Patient ID and extracted age of diagnosis, histology, molecular classification, self-identified race, genomically-assigned race by EIGENSTRAT, and percentage of African, European, Asian, and Native American ancestry. We used chi-square or one-way ANOVA to test for associations to Serous/CNH diagnosis. Controlling for age, we used multivariate logistic regression to determine the odds of diagnosis with serous or CNH EC. Results: We identified 568 women with EC, including 115 (20%) self-identified Black, 417 (73%) White, and 23 (4%) Asian. Significant differences in mean age at diagnosis (p<0.01), self-identified race (p<0.01), and genomically-assigned race (p<0.01) were present between women with endometrioid and serous histologies. Self-identified race and genomically-assigned race were both significantly associated with molecular subtype of cancer (p<0.01). A greater percentage of African Ancestry was seen in CNH vs CNL (27% vs 11%, p<0.01) and CNH vs MSI (27% vs 15%, p<0.001). In logistic regression, self-identified Black women had higher probability of diagnosis with serous EC (OR=2.129, CI [1.273–3.561], p<0.01) and CNH tumors (OR=2.846, CI [1.759–4.604], p<0.001) compared to self-identified White women. Relative to women characterized as European American (≥48% European Ancestry), African Americans (≥35% African ancestry) had greater odds of serous EC diagnosis (OR=2.289, CI [1.376–3.806], p<0.01) and CNH molecular type (OR=2.839 CI [1.760–4.579], p<0.01). For every 1% increase in African ancestry there was 1% increase in the probability of diagnosis with serous EC (CI [1.004–1.017], p<0.01) and 1.4% increase on the likelihood of diagnosis with CNH EC (CI [1.008–1.020], p<0.01), with this percentage increasing directly proportional. Conclusion: Our findings suggest that African ancestry is associated with an increased odds for both high-grade EC histology and molecular EC classification. Self-identified race and genomically-assigned race demonstrate similar associations with aggressive disease. Further characterization of the molecular drivers of EC, with consideration of environmental factors and how they may impact risk, is warranted. Citation Format: Alex P. Sanchez-Covarrubias, Angel D. Tabuyo-Martin, Caiden J. Walter, Alexandra Diaz, Sophia H.L. George, Matthew P. Schlumbrecht. African ancestry predicts serous and copy number high endometrial cancer [abstract]. In: Proceedings of the AACR Virtual Conference: 14th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2021 Oct 6-8. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2022;31(1 Suppl):Abstract nr PO-201