Melissa A. Simon

POI and EOI are rare but impactful conditions among adolescents and young adults (AYAs). Little is known about the timing and incidence of mental health (MH) conditions among AYAs diagnosed with POI/EOI. Data were collected using MarketScan Medicaid administrative claims among females aged 12–25 with POI/EOI. Merative™ MarketScan^® Research Databases are large, de-identified U.S. administrative healthcare claims databases that contain individual-level information on enrollment, inpatient and outpatient medical services, and outpatient prescription drug claims. The databases include commercially insured individuals, Medicare beneficiaries with employer-sponsored supplemental coverage, and selected Medicaid populations. Claims are linked longitudinally using unique encrypted patient identifiers, allowing individuals to be followed over time across healthcare settings. In addition to healthcare utilization, the databases include demographic characteristics, diagnosis and procedure codes, dates of service, and payment information, making them well suited for epidemiologic, health services, and outcomes research. We characterized prevalence and timing of MH diagnoses, examined MH subtypes, and estimated new-onset MH among those without prior MH. Comparisons were made to demographically matched controls without POI/EOI (matched on age and calendar time) and to diagnosis-anchored comparator groups. Among 859 AYAs with POI/EOI, 53.9% had any MH diagnosis, including 32.9% with MH diagnoses before and after POI/EOI diagnosis and 11.9% with new-onset MH after POI/EOI diagnosis. Of all anxiety disorders, 60.1% were present pre- and post-diagnosis, while 25.4% were new-onset after diagnosis. Depressive disorders showed a similar pattern, with 58.1% being pre- and post-diagnosis MH group and 22.3% being new-onset. In total, 49.4% of individuals with trauma-related disorders had the diagnosis both before and after POI/EOI diagnosis, while 30.1% had it as a new-onset. In adjusted models, POI/EOI was associated with increased odds of MH diagnoses after diagnosis (aOR ~2.1, 95% CI ~1.4–3.1). Prior MH diagnoses were the strongest predictor of MH after diagnosis (aOR ~12.1). AYAs with POI/EOI experience substantial MH burden, with elevated risk of new-onset MH conditions following diagnosis. Findings highlight the importance of early MH screening and integrated care models for AYAs.

Background: Female Chronic Pelvic Pain (CPP) is a common, complex, and multifactorial disease that is associated with a number of non-gynecologic and gynecologic conditions. The physical symptoms associated with CPP can contribute to emotional distress, ultimately affecting a woman’s quality of life. It is imperative now more than ever to further investigate how stereotypes and racial and gender disparities operate in CPP diagnosis and management for Black women, which was the ultimate goal of this study. Methods: A qualitative design was implemented that focused on one-on-one semi-structured interviews with 4 categories: General Understanding, Diagnosis Experience, Social and Economic Barriers, and Treatment Stage. The study had a total of 30 participants that self-identified as Black and were between the ages of 18–65. Thematic analysis and consolidation revealed 3 prevalent themes. Results/Discussion: First, Black women have an understanding of and subjective familiarity with their CPP diagnoses revealing knowledge may not be a limiting factor to receiving care. Secondly, the interviews revealed themes of “dismissal” and “normalization” of pain that appeared a total of 70 times across several social and medical contexts. Finally, a novel theme of “self-advocacy” emerged. Black patients feel a necessity to fight for recognition and adequate medical care. This, along with the known emotional distress linked to chronic pain contributes to increased mental load for these women. Conclusion: Overall, this study is a call to action for increased empathy in the provider-patient relationship, eliminating stereotypes in healthcare treatment, and emphasizing mental and emotional states in pain management.

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.

National Cancer Institute (NCI) designated cancer centers are entrusted with assessing the cancer burden within their catchment areas and using this information to guide research and outreach efforts. Data visualizations, like Cancer InFocus, have emerged as essential tools for facilitating this effort. Integrating clinical trial accrual data can further enhance our understanding of the catchment area. However, these data must be de-identified in accordance with the Health Insurance Portability and Accountability Act (HIPAA). This study introduces a de-identification method through geographic aggregation, ensuring HIPAA compliance and enabling comprehensive catchment area surveillance. Home addresses of patients enrolled in clinical trials at an NCI-designated Comprehensive Cancer Center were geocoded to census tracts. Tracts with less than 20 accruals were merged using the R geographic aggregation tool. A risk assessment was conducted to ensure low re-identification risk. Accrual rates were calculated and integrated into Cancer InFocus. Successful aggregation exceeded the 20-patient threshold for all merged tracts with low re-identification risk. Disparities between clinical trial accruals and social determinants of health were identified. The geographic aggregation method, compliant with HIPAA standards and integrated with Cancer InFocus, can enhance catchment area surveillance, furthering cancer research and outreach by pinpointing area-specific needs.

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.

Maternal death is a tragedy in any setting. Unfortunately, the US has maternal mortality far higher than many other well-resourced nations. Moreover, egregious

Engagement of community participation is an innovative driver of modern research. However, to benefit the communities being studied, it is imperative to continuously evaluate ethical considerations, the relationship dynamic between researchers and community members, and the responsiveness of research teams to the needs and preferences of communities. Northwestern University’s Center for Health Equity Transformation founded a community scientist program in 2018 that implemented a study using the Community-Based Participatory Research (CBPR) model. This project is an ongoing study of heavy metal exposure by geographic location in Chicago. Community scientists from various backgrounds, communities, and organizations formed an advisory panel, partnering with the cancer research team. This commentary describes lessons learned in structuring meaningful community involvement and benefit in CBPR, with a focus on three lessons learned that relate to ethics, relationships, and responsiveness. Our findings lay new groundwork for iteratively shaping best practices in CBPR.