Building Community Engagement Capacity in a Transdisciplinary Population Health Research Consortium.

Community engagement has been named a research priority by the National Institutes of Health, and scholars are calling for community engagement as an approach to address racism and equity in science. Robust community-engaged research can improve research quality, increase inclusion of traditionally marginalized populations, broaden the impact of findings on real-life situations, and is particularly valuable for underexplored research topics. The goal of this paper is to describe lessons learned and best practices that emerged from community engagement in a multi-institution population health research consortium. We describe how a foundation was laid to enable community-engaged research activities in the consortium, using a staged and stepped process to build and embed multi-level community-engaged research approaches.. We staged our development to facilitate (a) awareness of community engagement among consortium members, (b) the building of solidarity and alliances, and (c) the initiation of long-term engagement to allow for meaningful research translation. Our stepped process involved strategic planning; building momentum; institutionalizing engagement into the consortium infrastructure; and developing, implementing, and evaluating a plan. We moved from informal, one-time community interactions to systematic, formalized, capacity-building reciprocal engagement. We share our speed bumps and troubleshooting that inform our recommendations for other large research consortia-including investing the time it takes to build up community engagement capacity, acknowledging and drawing on strengths of the communities of interest, assuring a strong infrastructure of accountability for community engagement, and grounding the work in anti-racist principles.

ECOG-ACRIN EAZ171: Prospective Validation Trial of Germline Predictors of Taxane-Induced Peripheral Neuropathy in Black Women With Early-Stage Breast Cancer.

PURPOSE: Black women experience higher rates of taxane-induced peripheral neuropathy (TIPN) compared with White women when receiving adjuvant once weekly paclitaxel for early-stage breast cancer, leading to more dose reductions and higher recurrence rates. EAZ171 aimed to prospectively validate germline predictors of TIPN and compare rates of TIPN and dose reductions in Black women receiving (neo)adjuvant once weekly paclitaxel and once every 3 weeks docetaxel for early-stage breast cancer. METHODS: Women with early-stage breast cancer who self-identified as Black and had intended to receive (neo)adjuvant once weekly paclitaxel or once every 3 weeks docetaxel were eligible, with planned accrual to 120 patients in each arm. Genotyping was performed to determine germline neuropathy risk. Grade 2-4 TIPN by Common Terminology Criteria for Adverse Events (CTCAE) v5.0 was compared between high- versus low-risk genotypes and between once weekly paclitaxel versus once every 3 weeks docetaxel within 1 year. Patient-rated TIPN and patient-reported outcomes were compared using patient-reported outcome (PRO)-CTCAE and Functional Assessment of Cancer Therapy/Gynecologic Oncology Group-Neurotoxicity. RESULTS: Two hundred and forty of 249 enrolled patients had genotype data, and 91 of 117 (77.8%) receiving once weekly paclitaxel and 87 of 118 (73.7%) receiving once every 3 weeks docetaxel were classified as high-risk. Physician-reported grade 2-4 TIPN was not significantly different in high- versus low-risk genotype groups with once weekly paclitaxel (47% v 35%; P = .27) or with once every 3 weeks docetaxel (28% v 19%; P = .47). Grade 2-4 TIPN was significantly higher in the once weekly paclitaxel versus once every 3 weeks docetaxel arm by both physician-rated CTCAE (45% v 29%; P = .02) and PRO-CTCAE (40% v 24%; P = .03). Patients receiving once weekly paclitaxel required more dose reductions because of TIPN (28% v 9%; P < .001) or any cause (39% v 25%; P = .02). CONCLUSION: Germline variation did not predict risk of TIPN in Black women receiving (neo)adjuvant once weekly paclitaxel or once every 3 weeks docetaxel. Once weekly paclitaxel was associated with significantly more grade 2-4 TIPN and required more dose reductions than once every 3 weeks docetaxel.

Lower Urinary Tract Symptoms in US Women: Contemporary Prevalence Estimates from the RISE FOR HEALTH Study.

PURPOSE: We aimed to estimate the prevalence of a wide range of lower urinary tract symptoms (LUTS) in US women, and explore associations with bother and discussion with health care providers, friends, and family. MATERIALS AND METHODS: We analyzed baseline data collected from May 2022 to December 2023 in the RISE FOR HEALTH study-a large, regionally representative cohort study of adult female community members. LUTS and related bother were measured by the 10-item Symptoms of Lower Urinary Tract Dysfunction Research Network Symptom Index, and discussion was assessed by a study-specific item. RESULTS: Of the 3000 eligible participants, 73% (95% CI 71%-74%) reported any storage symptoms, 52% (95% CI 50%-53%) any voiding or emptying symptoms, and 11% (95% CI 10%-13%) any pain with bladder filling, for an overall LUTS prevalence of 79% (95% CI 78%-81%). This prevalence estimate included 43% (95% CI 41%-45%) of participants with mild to moderate symptoms and 37% (95% CI 35%-38%) with moderate to severe symptoms. Over one-third of participants reported LUTS-related bother (38%, 95% CI 36%-39%) and discussion (38%, 95% CI 36%-40%), whereas only 7.1% (95% CI 6.2%-8.1%) reported treatment. Urgency and incontinence (including urgency and stress incontinence) were associated with the greatest likelihood of bother and/or discussion (adjusted prevalence ratios = 1.3-2.3), even at mild to moderate levels. They were also the most commonly treated LUTS. CONCLUSIONS: LUTS, particularly storage LUTS such as urgency and incontinence, were common and bothersome in the RISE study population, yet often untreated. Given this large burden, both prevention and treatment-related interventions are warranted to reduce the high prevalence and bother of LUTS.

Societal implications of the Dobbs v Jackson Women's Health Organization decision.

On June 24, 2022, the US Supreme Court's decision in Dobbs v Jackson Women's Health Organization marked the removal of the constitutional right to abortion in the USA, introducing a complex ethical and legal landscape for patients and providers. This shift has had immediate health and equity repercussions, but it is also crucial to examine the broader impacts on states, health-care systems, and society as a whole. Restrictions on abortion access extend beyond immediate reproductive care concerns, necessitating a comprehensive understanding of the ruling's consequences across micro and macro levels. To mitigate potential harm, it is imperative to establish a research agenda that informs policy making and ensures effective long-term monitoring and reporting, addressing both immediate and future impacts.

Health-care workforce implications of the Dobbs v Jackson Women's Health Organization decision.

The Dobbs v Jackson Women's Health Organization Supreme Court decision, which revoked the constitutional right to abortion in the USA, has impacted the national medical workforce. Impacts vary across states, but providers in states with restrictive abortion laws now must contend with evolving legal and ethical challenges that have the potential to affect workforce safety, mental health, education, and training opportunities, in addition to having serious impacts on patient health and far-reaching societal consequences. Moreover, Dobbs has consequences on almost every facet of the medical workforce, including on physicians, nurses, pharmacists, and others who work within the health-care system. Comprehensive research is urgently needed to understand the wide-ranging implications of Dobbs on the medical workforce, including legal, ethical, clinical, and psychological dimensions, to inform evidence-based policies and standards of care in abortion-restrictive settings. Lessons from the USA might also have global relevance for countries facing similar restrictions on reproductive care.

Immigration-Related Factors and Depression Help-Seeking Behaviors Among Older Chinese Americans.

OBJECTIVES: Asian Americans have the lowest mental health service utilization rate among all racial/ethnic groups. This study investigates how immigration-related factors shape the depression help-seeking behaviors of older Chinese Americans. METHODS: Data were collected from participants who reported experiencing any depressive symptoms in the Population-based Study of Chinese Elderly in Chicago (n = 907). Multinomial logistic regressions were conducted to examine the associations between immigration-related factors and help-seeking behaviors, including not seeking help (23.5%), seeking help from informal source(s) only (40%), seeking help from both informal and formal sources (28.7%), and seeking help from formal source(s) only (8.8%). RESULTS: Older Chinese Americans with lower levels of acculturation (OR = 0.88, 95% CI = 0.79-0.97) and those who lived in Chinatown (OR = 2.34, 95% CI = 1.21-4.52) were more likely to seek help from formal sources only (relative to not seeking any help). CONCLUSIONS: Older Chinese Americans with depressive symptoms predominately relied on informal sources of help, either solely or in combination with formal sources, to address their depressive symptoms. CLINICAL IMPLICATIONS: Leveraging informal support networks and ethnicity-specific resources represents a promising approach for this population.

Intimate Partner Violence Detected during Abortion-Related Visits: A Systematic Review of Screenings and Interventions.

OBJECTIVE: To perform a systematic review of screening tools and interventions focused on reducing adverse health outcomes associated with intimate partner violence (IPV) at abortion-related visits. STUDY DESIGN: Studies were eligible if they included individuals seeking pregnancy options health care services in the United States, screening for or implementation of an intervention for IPV, and were published in English after the year 2000. The primary outcomes were to summarize screening tools, interventions studied, and if interventions led to individuals being connected to IPV-related resources. Secondary outcomes included patient responses to the IPV-related interventions and any other outcomes reported by the studies (PROSPERO #42021252199). RESULTS: Among 4,205 abstracts identified, nine studies met inclusion criteria. The majority (n = 6) employed the ARCHES (Addressing Reproductive Coercion in Health Settings) tool for identification of IPV. Interventions included provider-facilitated discussions of IPV, a safety card with information about IPV and community-based resources, and referral pathways to directly connect patients with support services. For the primary outcome, IPV-related interventions were shown to better inform patients of available IPV-related resources as compared to no intervention at all. For the secondary outcomes, screening and intervening on IPV were associated with improvements in patient perception of provider empathy (i.e., caring about safety) and safer responses by patients to unhealthy relationships. CONCLUSION: Screening for and intervening on IPV at abortion-related visits are associated with positive outcomes for patient safety and the patient-provider relationship. However, data on effective tools for identifying and supporting these patients are extremely limited. This review emphasizes the unmet need for implementation and evaluation of IPV-specific interventions during abortion-related clinical encounters. KEY POINTS: · The abortion visit offers a crucial setting to address IPV among a highly affected population.. · This study reviews others that analyzed interventions and associated outcomes for IPV at abortion-related visits.. · Appropriate interventions for IPV can improve patient-provider relationships and connect patients to essential resources..

Impact of training and case manager support for traditional birth attendants in the linkage of care among HIV-positive pregnant women in Southwest Nigeria: a 3-arm cluster randomized control trial.

BACKGROUND: Mother-to-child transmission (MTCT) accounts for 90% of all new paediatric HIV infections in Nigeria and for approximately 30% of the global burden. This study aimed to determine the effectiveness of a training model that incorporated case managers working closely with traditional birth attendants (TBAs) to ensure linkage to care for HIV-positive pregnant women. METHODS: This study was a 3-arm parallel design cluster randomized controlled trial in Ifo and Ado-Odo Ota, Ogun State, Nigeria. The study employed a random sampling technique to allocate three distinct TBA associations as clusters. Cluster 1 received training exclusively; Cluster 2 underwent training in addition to the utilization of case managers, and Cluster 3 served as a control group. In total, 240 TBAs were enrolled in the study, with 80 participants in each of the intervention and control groups. and were followed up for a duration of 6 months. We employed a one-way analysis of variance (ANOVA) statistical test to evaluate the differences between baseline and endline HIV knowledge scores and PMTCT practices. Additionally, bivariate analysis using the chi-square test was used to investigate linkage to care. Furthermore, logistic regression analysis was utilized to identify TBA characteristics associated with various PMTCT interventions, including the receipt of HIV test results and repeat testing at term for HIV-negative pregnant women. The data analysis was performed using Stata version 16.1.877, and we considered results statistically significant when p values were less than 0.05. RESULTS: At the end of this study, there were improvements in the TBAs' HIV and PMTCT-related knowledge within the intervention groups, however, it did not reach statistical significance (p > 0.05). The referral of pregnant clients for HIV testing was highest (93.5%) within cluster 2 TBAs, who received both PMTCT training and case manager support (p ≤ 0.001). The likelihood of HIV-negative pregnant women at term repeating an HIV test was approximately 4.1 times higher when referred by TBAs in cluster 1 (AOR = 4.14; 95% CI [2.82-5.99]) compared to those in the control group and 1.9 times in cluster 2 (AOR = 1.93; 95% CI [1.3-2.89]) compared to the control group. Additionally, older TBAs (OR = 1.62; 95% CI [1.26-2.1]) and TBAs with more years of experience in their practice (OR = 1.45; 95% CI [1.09-1.93]) were more likely to encourage retesting among HIV-negative women at term. CONCLUSIONS: The combination of case managers and PMTCT training was more effective than training alone for TBAs in facilitating the linkage to care of HIV-positive pregnant women, although this effect did not reach statistical significance. Larger-scale studies to further investigate the benefits of case manager support in facilitating the linkage to care for PMTCT of HIV are recommended. TRIAL REGISTRATION: The study was retrospectively registered in the Pan African Clinical Trial Registry, and it was assigned the unique identification number PACTR202206622552114.

Key Findings from Mental Health Research During the Menopause Transition for Racially and Ethnically Minoritized Women Living in the United States: A Scoping Review.

Background: Racially and ethnically minoritized (REM) women experience social and structural factors that may affect their response to mental health treatment and menopausal symptoms during the menopause transition (MT). This scoping review on mental health during the MT for REM women in the United States was conducted to characterize factors associated with mental health challenges. Materials and Methods: Five databases were searched. Articles were included if focused on MT in REM women in the United States and its territories with specific mental illnesses and published in English from 2005 to 2021. Titles and abstracts and full text were screened. Screening and data collection were completed in duplicate by two reviewers in Covidence. Results: Sixty-five articles were included and indicate that REM women experience a disproportionate burden of depressive symptoms during the MT. Less evidence is reported about anxiety, Post-Traumatic Stress Disorder, psychosis, schizophrenia, and other mental illnesses. The risk factors associated with mental illness during MT are social, structural, and biological. Treatment response to therapeutic interventions is often underpowered to explain REM differences. Conclusion: Depression during the MT is associated with negative outcomes that may impact REM women differentially. Incorporating theoretical frameworks (e.g., intersectionality, weathering) into mental health research will reduce the likelihood that scientists mislabel race as the cause of these inequities, when racism and intersecting systems of oppression are the root causes of differential expression of mental illness among REM women during the MT. There is a need for interdisciplinary research to advance the mental health of REM women.

Epidemiology and survival outcomes of HIV-associated cervical cancer in Nigeria.

INTRODUCTION: Invasive cervical cancer (ICC) is an HIV-associated cancer that is preventable and precancerous stages including early ICC stages could be detected through screening offering opportunities for treatment and cure. The high incidence in women living with HIV and late presentation often at advanced stages of ICC with limited treatment facilities often result in early mortality. We sought to compare the epidemiologic characteristics and survival differences in HIV status of ICC patients in Nigeria. METHODS: We conducted a cohort study at two federal academic hospital-based research sites in Jos University Teaching Hospital, and Lagos University Teaching Hospital Nigeria, between March 2018 and September 2022. We enrolled women with histologically confirmed ICC with known HIV status, and FIGO staging as part of the United States of America's National Institutes of Health/National Cancer Institute funded project titled 'Epigenomic Biomarkers of HIV-Associated Cancers in Nigeria'. The primary outcome was all-cause mortality with assessment of overall survival (OS) and time to death after ICC diagnosis. OS distribution was estimated using the method of Kaplan-Meier and compared between groups using the log-rank test. RESULTS: A total of 239 women with confirmed ICC were enrolled and included in this analysis, of whom 192 (80.3%) were HIV-negative (HIV-/ICC +), and 47 (19.7%) were HIV-positive (HIV +/ICC +). The HIV +/ICC + patients were younger with median age 46 (IQR: 40-51) years compared to 57 (IQR: 45-66) among HIV-/ICC + (P < 0.001). Squamous cell carcinoma was the commonest histopathologic variant in 80.4% of ICC diagnosis, moderately differentiated tumor grade in 68.1% in both groups. HIV +/ICC + diagnosis was at FIGO advanced stages in 64.9% compared to 47.9% in HIV-/ICC +. The HIV-/ICC + women had better OS compared to HIV +/ICC + participants (p = 0.018), with 12-month OS 84.1% (95%CI 75-90%) and 67.6% (95%CI 42-84%) respectively. CONCLUSION: ICC is diagnosed at a relatively young age in women living with HIV, with a significantly lower overall survival probability compared to women without HIV. The trend of presentation and diagnosis at advanced stages in women living with HIV could partly explain the differences in overall survival.

Over-the-Counter Progestin-Only Oral Contraceptives.

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Epidemiology and Survival outcomes of HIV-associated cervical cancer in Nigeria.

Introduction: Invasive cervical cancer (ICC) is an HIV-associated cancer that is preventable and precancerous stages including early ICC stages could be detected through screening offering opportunities for treatment and cure. The high incidence in women living with HIV and late presentation often at advanced stages of ICC with limited treatment facilities often result in early mortality. We sought to compare the epidemiologic characteristics and survival differences in HIV status of ICC patients in Nigeria. Methods: We conducted a cohort study at two federal academic hospital-based research sites in Jos University Teaching Hospital, and Lagos University Teaching Hospital Nigeria, between March 2018 and September 2022. We enrolled women with histologically confirmed ICC with known HIV status, and FIGO staging as part of the United States of America's National Institutes of Health/National Cancer Institute funded project titled 'Epigenomic Biomarkers of HIV-Associated Cancers in Nigeria'. The primary outcome was all-cause mortality with assessment of overall survival (OS) and time to death after ICC diagnosis. OS distribution was estimated using the method of Kaplan-Meier and compared between groups using the log-rank test. Results: A total of 239 women with confirmed ICC were enrolled and included in this analysis, of whom 192 (80.3%) were HIV-negative (HIV-/ICC+), and 47 (19.7%) were HIV-positive (HIV+/ICC+). The HIV+/ICC) patients were younger with median age 46 (IQR: 40-51) years compared to 57 (IQR: 45-66) among HIV-/ICC+) (P<0.001. Squamous cell carcinoma was the commonest histopathologic variant in 80.4% of ICC diagnosis, moderately differentiated tumor grade in 68.1% in both groups. HIV+/ICC+ diagnosis was at FIGO advanced stages in 64.9% compared to 47.9% in HIV-/ICC+. The HIV-/ICC+ women had better OS compared to HIV+/ICC+ participants (p=0.018), with 12-month OS 84.1% (95%CI: 75% - 90%) and 67.6% (95%CI: 42%-84%) respectively. Conclusion: ICC is diagnosed at a relatively young age in women living with HIV, with a significantly lower overall survival probability compared to women without HIV. The trend of presentation and diagnosis at advanced stages in women living with HIV could partly explain the differences in overall survival.

Community-Driven Conversations: Partnership Building through CHEC-Ins.

BACKGROUND: Chicago's systemically underserved communities have disproportionately high cancer rates. The Chicago Cancer Health Equity Collaborative (ChicagoCHEC) brings together academic and community partners to address these health inequities. The community conversations known as "CHEC-Ins" provide a space for community members to voice their experiences and needs and for ChicagoCHEC to fulfill its commitment to advancing health equity through collaboration and action. OBJECTIVE: This paper presents a community-generated approach to social networking about cancer health issues known as CHEC-Ins. Through this innovative approach, community members and organizations share cancer related information and experiences, as well as needs and concerns, which are then channeled to ChicagoCHEC academic and administrative members who incorporate them into outreach and research activities. In this way, community members set the agenda and the process and collect the information they deem relevant and important. This paper describes the process of organizing and conducting two pilot CHEC-Ins and the model of this approach, which we intend to employ moving forward to advance partnership building and collaborative research practice between academic institutions and community partners and organizations. This paper contributes a unique model of community-generated and led outreach as a cornerstone of the ChicagoCHEC approach to community engagement. METHODS: The leaders of the ChicagoCHEC Community Steering Committee spearheaded the design and implementation of CHEC-Ins, including developing the question guide and hosting events within their organizations. LESSONS LEARNED: CHEC-Ins proved to be a valuable strategy for defining the role of community partners and establishing the basis for a bi-directional flow of information, resources, and productive action. The two pilot CHEC-Ins revealed important insights related to sources of cancer information, meanings and associated attitudes, barriers to access and use of health services, and social support systems in the communities where ChicagoCHEC works. We will implement this approach and continue to refine it as we conduct CHECIns moving forward.

Exploratory mixed methods study on care-seeking behaviors of Asian Americans with pelvic floor symptoms.

INTRODUCTION AND HYPOTHESIS: The objective was to evaluate whether younger age was associated with noncare-seeking behavior among Asian Americans with pelvic floor symptoms, and secondarily, to explore multilevel factors that may contribute to noncare-seeking behavior in this population. METHODS: We performed a concurrent mixed methods study and heterogeneously sampled Asian Americans with urinary incontinence, urgency-frequency, vaginal bulge, or anal incontinence. We stratified the participants into two groups, care seekers vs noncare seekers. Using Anderson's model as the main framework, we administered validated questionnaires and conducted semi-structured interviews to explore factors associated with care-seeking behaviors. RESULTS: Seventy-eight surveys and 20 interviews were completed and analyzed. Most participants reported urinary leakage (67%), followed by urinary urgency-frequency (50%), anal incontinence (18%), and vaginal bulge (17%). The mean age of the study cohort was 46.1 ± 16.2 years. We found noncare seekers to be younger and with an increased proportion of lifetime spent in the USA than care seekers. When controlling for age, proportion of lifetime spent in the USA, symptom severity, and individual-level resources, both younger age and increased proportion of lifetime spent in USA remained independently associated with noncare-seeking behavior. From qualitative data, we found that noncare seekers often experienced anti-Asian racism across workplace, neighborhoods, and health care settings. Additionally, noncare seekers also reported symptom minimization and decreased self-efficacy when coping with their pelvic floor symptoms. CONCLUSIONS: We found that one's age and proportion of lifetime spent in the USA may affect the extent of exposure to anti-Asian racism that is associated with symptom minimization, increased perceived barrier, and noncare-seeking behavior.

SweetMama: Usability Assessment of a Novel Mobile Application Among Low-Income Pregnant People to Assist With Diabetes Management and Support.

Background: Mobile health tools may be effective strategies to improve engagement, education, and diabetes-related health during pregnancy. We developed SweetMama, a patient-centered, interactive mobile application (app) designed to support and educate low-income pregnant people with diabetes. Our objective was to evaluate the SweetMama user experience and acceptability. Methods: SweetMama is a mobile app with static and dynamic features. Static features include a customized homepage and resource library. Dynamic features include delivery of a theory-driven diabetes-specific curriculum via 1) motivational, tip, and goal-setting messages aligning with treatment and gestational age; 2) appointment reminders; and 3) ability to mark content as "favorite." In this usability assessment, low-income pregnant people with gestational or type 2 diabetes used SweetMama for 2 weeks. Participants provided qualitative feedback (via interviews) and quantitative feedback (via validated usability/satisfaction measures) on their experience. User analytic data detailed the duration and type of interactions users had with SweetMama. Results: Of 24 individuals enrolled, 23 used SweetMama and 22 completed exit interviews. Participants were mostly non-Hispanic Black (46%) or Hispanic (38%) individuals. Over the 14-day period, users accessed SweetMama frequently (median number of log-ins 8 [interquartile range 6-10]), for a median of 20.5 total minutes, and engaged all features. A majority (66.7%) rated SweetMama as having moderate or high usability. Participants emphasized design and technical strengths and beneficial effects on diabetes self-management and also identified limitations of the user experience. Conclusion: Pregnant people with diabetes found SweetMama to be user-friendly, informative, and engaging. Future work must study its feasibility for use throughout pregnancy and its efficacy to improve perinatal outcomes.