Jacobs Institute of Women's Health

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    They had to watch : How parents perceive the suffering of siblings of children with cancer

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    AIMS: While many siblings of children with cancer demonstrate resilient outcomes, they also face their own unique experiences that increase their risk for acute and long-term psychosocial difficulties. It is accepted that children undergoing cancer treatment experience suffering, the alleviation of which is a main goal of palliative care, yet research has not yet explored whether siblings experience their own suffering. This work aimed to determine whether parents perceive that their child(ren) without cancer suffered throughout the illness course and how that suffering would be described. METHODS: Using literature and expert input, a survey was developed to elicit caregivers\u27 perceptions of suffering in their children with and without cancer and was disseminated through the American Childhood Cancer Organization. Responses regarding sibling suffering were analyzed, considering differences in accounts between bereaved caregivers and those whose child with cancer remains living. RESULTS: A total of 202 parents (81 bereaved, 121 whose child with cancer remains alive) responded. Themes of sibling suffering include disconnection and/or displacement, lack of stability and certainty, emotional consequences, bearing witness, and lasting impact. One distinct theme, suffering as continued loss, emerged from bereaved parents\u27 responses. SIGNIFICANCE OF RESULTS: Both parental groups described sibling suffering similarly despite different outcomes for their child with cancer. The idea of sibling suffering by bearing witness to what the child with cancer experienced is unique and worthy of further understanding. This work highlights the need for sibling and parent psychosocial assessment and palliative intervention throughout cancer treatment. Gaining longitudinal input from siblings and parents regarding the experience of suffering is a critical next step to develop tailored interventions

    Evaluation of a group antenatal care intervention in two Northern Nigerian states: Quasi-experimental study

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    BACKGROUND: In low- and middle-income countries (LMIC), group antenatal care (gANC) has the potential to reshape the traditional antenatal care (ANC) service delivery model, enhancing the care experience for both women and providers. ANC non-utilization rates are high in some parts of Nigeria, the evidence-based gANC program offers a structured yet flexible model that may increase maternal and child healthcare utilization which may in turn improve outcomes. METHODS: This is a longitudinal study of women who participated in the gANC program at healthcare facilities sampled in Kaduna and Kano states, Nigeria. We plan to follow this longitudinal cohort over 3 time points of 18 months and to use data on participation in the gANC program as an independent variable to predict program outcomes using multivariate analysis and propensity matching techniques. This is aimed at isolating the causal effect of the number of gANC meetings attended during the index pregnancy on the probability of delivering that pregnancy in a health facility. To achieve that objective, we used inverse-probability weighting in addition to adjusted multivariate logistic regression models. RESULTS: Overall, we found that there was high retention at follow-up, and generally high attendance at follow-up, with higher attendance based on other variables such as prior pregnancy and participants who were employed. We had low participants\u27 attrition well within power analysis assumptions for the study. In terms of causal inference, there is a strong positive relationship between gANC session attendance and facility delivery, with women who attended five or more gANC sessions being approximately twice as likely to deliver in a health facility as those who attended none or one. Adjustment for a set of socio-demographic and prior pregnancy- and delivery-related variables via inverse probability weighting showed that a positive effect on facility delivery persists, especially at the highest levels of gANC session attendance. DISCUSSION: Results of this study tend to confirm the main findings from previous studies of gANC, which found that higher levels of participation resulted in higher facility delivery. This study found that it was both scalable in a diverse set of urban and rural healthcare facilities and engagement with the program among eligible women was high. Future research in the current longitudinal study will evaluate long-term effects of gANC on maternal and child health outcomes such as family planning and vaccination. CONCLUSION: The gANC program at scale in Nigeria produced high levels of participation, and resulted in increased facility birthing utilization that were consistent with previous research. Future research should examine how to optimize program impact and enhance sustainability

    Mastering the Art of Symmetry: Long-Term Outcomes and Management in Patients with Tessier No. 7 Cleft

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    ObjectiveAchieving facial symmetry in patients with Tessier no. 7 cleft undergoing oral commissure reconstruction remains a challenge, with variable aesthetic and functional outcomes. Due to the rarity of this condition, data on long-term treatment effectiveness is limited. This study evaluates postoperative facial symmetry using facial anthropometric analysis in patients who underwent commissuroplasty over a 19 year period.DesignRetrospective cohort study.SettingSingle-institution craniofacial center.PatientsPatients who underwent commissuroplasty for Tessier no. 7 cleft between 2005 and 2024.InterventionMyomucosal advancement flap commissuroplasty technique.Main Outcome MeasuresFacial symmetry was assessed using 5 2-dimensional measurements: stomion-to-chelion (st_ch), chelion-to-ala (ch_al), chelion-to-exocanthion (ch_ex), chelion-to-pogonion (ch_pg), and commissure angle (co_ang). A symmetry ratio of 1.0 indicated ideal symmetry. Major revisions included secondary surgery for asymmetry or scar revision.ResultsThirty-two patients were included; 24 had unilateral (76% right-sided) and 8 had bilateral clefts. Median age at surgery was 8.1 months; 48% were female. Additional Tessier clefts were present in 25% of patients, and 25% had syndromic diagnoses. Major revisions were required in 28.6% of cases. Symmetry significantly improved in 4 of 5 facial regions, though commissure angle showed no significant change. Symmetry ratios remained stable over a median follow-up of 3.3 years.ConclusionCommissuroplasty improves facial symmetry across most parameters in patients with Tessier no. 7 cleft, with durable long-term outcomes. Limited improvement in commissure angulation highlights the need for continued refinement of surgical techniques

    Vaccine value profile for schistosomiasis

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    Schistosomiasis is caused by parasitic flatworms (Schistosoma). The disease in humans can be caused by seven different species of Schistosoma: S. mansoni, S. japonicum, S. haematobium, S. malayensis, S. mekongi, S. guineensis and S. intercalatum, as well as by hybrids between species, including livestock schistosome species. People are infected when exposed to infested water and the parasite larvae penetrate the skin. Poor and rural communities are typically the most affected, and the general population who lives in affected areas and is exposed to contaminated water is at risk. Areas with poor access to safe water and adequate sanitation are also at heightened risk. About 236.6 million people required treatment for schistosomiasis in 2019-mostly people living in poor, rural communities, especially fishing and agricultural communities. This \u27Vaccine Value Profile\u27 (VVP) for schistosomiasis is intended to provide a high-level, holistic assessment of the information and data that are currently available to inform the potential public health, economic, and societal value of pipeline vaccines and vaccine-like products. This VVP was developed by a working group of subject matter experts from academia, non-profit organizations, public private partnerships, and multi-lateral organizations. All contributors have extensive expertise on various elements of the schistosomiasis VVP and collectively aimed to identify current research and knowledge gaps. The VVP was developed using only existing and publicly available information

    Metagenomic Profiling of Gut Microbiota in Kidney Precision Medicine Project Participants With CKD and AKI

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    BACKGROUND: The gut microbiome plays an important role in human health and disease. Kidney Precision Medicine Project (KPMP) is a well-phenotyped, kidney biopsy-proven cohort of AKI and CKD patients. Comprehensive profiling of gut microbiota can uncover novel mechanistic, diagnostic, and therapeutic strategies for CKD and AKI patients. METHODS: We performed metagenomic whole genome sequencing (mWGS; \u3e 25 million reads) on KPMP stool samples. mWGS data of healthy controls from 4 published studies was used. Kraken2 and MetaPhlAn3 were used for taxonomic assignment, and HUMAnN3 for functional annotation. RESULTS: Kraken2 analysis showed significantly higher abundance of Ruminococcus bicirculans in CKD (6.47) compared to AKI (1.82) and healthy individuals (2.42; p = 0.01). Furthermore, the abundance of Gordonibacter pamelaeae increased in CKD (0.30) compared to AKI (0.07; p = 0.05) and healthy individuals (0.03). The percent mean abundance of genus Chryseobacterium was slightly higher in CKD (0.07) compared to AKI (0.05; p = 0.05) but reduced compared to healthy individuals (0.20; p \u3c 0.001). MetaPhlAn3 identified alterations in Gordonibacter, Bacteroides, and Faecalibacterium with a significant increase in Clostridium asparagiforme in AKI (11.68) compared to CKD (0.03; p = 0.06) and healthy (0.01; p = 0.001) individuals. Roseburia hominis, Roseburia intestinalis, Dorea longicatena, and Gemmiger formicilis were significantly reduced in AKI compared to CKD and healthy individuals. LDA/HUMAnN3 analysis showed a significant correlation between several metabolites and bacterial species in this KPMP population. CONCLUSION: Kidney biopsy-proven CKD and AKI patients show a distinct gut microbiota profile compared to healthy individuals. This high-quality dataset is a valuable resource for developing microbiome-based diagnostics and therapies for CKD and AKI

    Parity in Health Care Requires Recognition of Disparities and Strategies to Improve Care Delivery

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    Association of Preoperative Nutritional Status With Outcomes in Fronto-Orbital Advancement for Syndromic Craniosynostosis

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    BACKGROUND: Calvarial vault remodeling (CVR) is a critical procedure for patients with syndromic craniosynostosis (SC), a condition associated with genetic syndromes and comorbidities that can worsen nutritional status before surgery. Despite nutritional challenges in this population, few studies have assessed how preoperative nutritional health correlates with complications, relapse, or hospital stay after CVR. PURPOSE: The study purpose was to measure the association of nutritional status on surgical outcomes in patients with SC undergoing CVR. STUDY DESIGN, SETTING, SAMPLE: This study was a retrospective cohort analysis of pediatric subjects with SC who underwent CVR between 2002 and 2024 at a children\u27s hospital in Los Angeles. Patients surgically treated at external hospitals were excluded. PREDICTOR VARIABLE: The primary predictor variable was nutritional status, measured using weight-for-length (WFL) percentile, with higher values indicating better nutritional status. Gastrostomy tube (G-tube) dependency and preoperative serum albumin were included as secondary predictors. MAIN OUTCOME VARIABLE(S): The primary outcome was the occurrence of postoperative complications, including hematomas, unplanned reoperation, and skeletal relapse. Secondary outcomes included length of stay, readmissions, and mortality. COVARIATES: The covariates were demographics (age, sex, and prematurity) and surgical parameters (anesthesia time and blood transfusions). ANALYSES: Statistical analyses included χ tests, analysis of variance, t-tests, and regression analyses to assess the relationships between nutritional status and outcome variables. A P value of \u3c 0.05 was considered statistically significant. RESULTS: The study included 86 patients (mean age 12.4 ± 10.9 months); 14% (n = 12) were premature and 21% (n = 18) were G-tube dependent. G-tube dependent patients had significantly lower WFL percentiles compared to those without G-tubes (26.4 vs 43.5, P \u3c .001). Lower WFL scores were significantly associated with higher rates of postoperative complications (P = .047). Regression analysis showed that for every 10-point increase in WFL percentile, the predicted probability of complications decreased by 6.5% (P \u3c .001). CONCLUSIONS AND RELEVANCE: Low WFL and G-tube dependency were statistically significantly associated with a higher rate of postoperative complications in patients with SC undergoing CVR. These findings suggest that careful assessment and optimization of preoperative nutritional status may help reduce the risk of complications and improve patient outcomes

    Engagement in Responsible Conduct of Research: A Descriptive Case Study of the Factors of Organizational Culture and Implementation Drivers That Influence Research Integrity Practice

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    This qualitative descriptive case study investigates the relationship between organizational culture and the Responsible Conduct of Research (RCR) across multiple research institutions. Utilizing elements of the Cultural Dynamics Model and the Implementation Drivers Framework, the study examines how institutional structures and cultural norms shape research integrity practices. Data collection involved in-depth interviews with faculty, postdoctoral researchers, and graduate students, as well as an artifact review of institutional policies, training resources, and guidance for research best practices. Findings revealed three key themes: (1) Microculture Experiences, where RCR engagement is largely dictated by localized lab cultures, with principal investigators (PIs) playing a pivotal role in setting research integrity standards; (2) Institutional Priorities and Expectations, where organizational emphasis on productivity and funding often conflicts with ethical research practices, leading to inconsistent enforcement of RCR policies; and (3) Culture of Compliance, which highlights the limitations of regulatory-driven approaches that prioritize procedural adherence over fostering a genuine commitment to ethical research. Additionally, the study identified barriers such as power imbalances between faculty and trainees, fear of retaliation for reporting misconduct, and the impact of immigration status on international researchers’ willingness to challenge unethical practices. A key outcome of this research is the development of the Ethical Ecosystem framework, which provides actionable recommendations for institutions to strengthen RCR engagement. This framework emphasizes the need for tailored RCR education, enhanced mentorship structures, and institutional reforms to balance compliance with proactive integrity-building initiatives. The findings of this study have implications for policy development, targeted training and education, and future research aimed at fostering a more supportive and ethically driven research environmen

    GW Ophthalmology On Call: 03/2025

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