Underrepresentation of individuals with limited English proficiency (LEP) who speak Spanish is ongoing in phase 3 biomedical clinical trials and exacerbates health inequity. This article suggests strategies for increasing representation of Spanish speakers in clinical rials by emphasizing the importance of early engagement with Spanish language communities, inclusive participant recruitment, and collaborative trial design and implementation. Although investigators and institutions administering government-funded research must meet federal requirements for language assistance, journal editors, peer reviewers, institutional review board members, academic health centers, and all beneficiaries of the biomedical and behavioral research enterprise in the United States must motivate linguistic inclusion.
Background There are persistent disparities in maternal and infant perinatal outcomes experienced by Black birthing persons compared with non-Hispanic white (NHW) individuals in the US. The differences in outcomes arise from not only socioeconomic factors and individual health behaviors but also structural racism. Recent research is beginning to elucidate the benefits of patient navigation to support underserved minoritized individuals who experience this constellation of barriers to equitable care. Qualitative research that utilizes both the experiences of Black birthing individuals and the expert opinion of healthcare providers working with them can serve to guide a patient navigation intervention to further decrease disparities in perinatal outcomes. Methods We conducted 30 interviews between August and December 2020 with Black birthing individuals in the Chicago metropolitan area and healthcare providers who care for this population both in Chicago and across the nation to explore their experiences, perceptions of barriers to care and ways to decrease inequities. Results Clinical care team members acknowledged the presence of health disparities experienced by Black pregnant individuals compared with their NHW counterparts stemming from racism, discrimination, and lack of resources. Patients similarly reported personal experiences with these disparities and barriers to care. The successful methods used by clinical care teams to help decrease these differences in the past included patient education on important topics such as breastfeeding and the use of patient advocates. Effectively screening for social determinants of health by someone the patient trusts was also cited as important. Regarding perinatal care practices, clinical care team members described the importance of patient education needs and care team cultural competency. Patients’ reported positive and negative experiences corroborated these findings, emphasizing the importance of trust, listening, education, access to care, support, and patient advocacy. Finally, the care team members and patients agreed that active trust-building can help the provider/patient relationship and ultimately improve outcomes. Conclusions These qualitative research findings improve the understanding of barriers to care and will help guide development of an intervention to reduce the health disparities experienced by Black pregnant persons.
Background: Members of the lesbian, gay, bisexual, transgender, and queer (LGBTQ) community experience health disparities stemming from factors that include barriers to access, such as lack of LGBTQ-competent providers, discrimination, avoidance of care due to concerns about mistreatment, low income, unstable housing and lack of insurance. LGBTQ individuals have reduced rates of cancer screening which may lead to delayed diagnosis, have disproportionately higher rates of certain cancers, and are at elevated risk for many comorbidities, including mental health conditions, substance abuse, smoking-related diseases, cardiovascular disease and HIV. Community health clinics serve a critical role in the health of LGBTQ patients with cancer, however referral to institutionally-disconnected cancer specialists often disrupts care received at their primary care medical home, leaving a large gap in integrated primary care services. Thus, upon cancer diagnosis, LGBTQ patients become vulnerable to disruptions in support systems and fragmentation of cancer and primary care. The 4R model (Right information and Right Care for the Right Patient at the Right Time) is a novel approach our team developed to facilitate cancer planning, as a vehicle for patient enablement and team-based care delivery across the oncology and primary care continuum. The goal of our project is to identify barriers and facilitators to implementation of the 4R model as a component of care delivered to LGBTQ cancer survivors and later develop a protocol tailored to optimally meet the needs and preferences of LGBTQ cancer survivors, including overcoming barriers to optimal care that are presented by fragmentation of multi-level care at sites nationwide. Methods: In collaboration with one of the largest healthcare organizations caring primarily for an LGBTQ population, semi-structured interviews are being conducted with clinical care team members (N=10), patients (N=25), family/caregivers (N=10), and community organizations (N=5) in order to identify barriers and facilitators to implementation of the 4R model as a component of care delivered to LGBTQ cancer survivors. A Rapid Analysis Process, which is a qualitative analysis method recommended for circumstances in which a quick analysis is required to adopt changes to an ongoing process, will be utilized. Results: Interviews with clinical team members and stakeholder feedback with our FQHC partner site indicate a lack of research in and need to providing appropriate and effective cancer care coordination for the LGBTQ population. Interviews conducted with various stakeholder groups will reveal important considerations in (1) initiating cancer care, (2) providing appropriate supports and resources, (3) addressing comorbid conditions, and (4) providing follow up cancer monitoring, specifically for LGBTQ individuals. Citation Format: Nicolas Francone, Jonathan Alhalel, Will Dunne, Sankirtana Danner, Nihmotallahi Adebayo, Toni Madorsky, Cassandra Osei, Juan Rivera, Julia Trossman, Christine Weldon, Elizabeth Adetoro, Melissa Simon. Adapting a novel cancer care delivery model: identifying barriers unique to care coordination for LGBTQ cancer survivors [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2021; 2021 Apr 10-15 and May 17-21. Philadelphia (PA): AACR; Cancer Res 2021;81(13_Suppl):Abstract nr 2552.
Introduction: Utilizing allografts from donors after cardiac death (DCD) has improved organ availability, and DCD livers comprise a growing proportion of transplantations. However, it has been suggested that DCD transplantations have worse outcomes. Research Questions: We aimed to characterize outcomes in a large cohort of DCD transplantations, identify trends in outcomes over time, and identify factors associated with the development of biliary complications. Design: We conducted an observational retrospective cohort study of patients receiving DCD liver allografts within a large academic teaching hospital with a high transplantation volume. Consecutive patients who underwent Type III DCD liver transplantation from 2006–2016 were included in our cohort. Re-transplantations and multi-organ transplant recipients were excluded. Results: Ninety-six type III DCD transplantations occurred between 2006–2016. We report a 1one-year patient survival of 90.6% (87) and a 5five-year patient survival of 69.8% (67). Twenty-nine (30.2%) patients experienced any biliary complication in the first year following discharge, with 17 (17.7%) experiencing ischemic cholangiopathy. Five-year patient (P = 0.04) and graft (P = 0.005) survival improved over time. Post-operative biliary complications experienced during index admission and prior to discharge were found to be associated with the development of biliary complications (P = 0.005) and ischemic cholangiopathy (P = 0.01) following discharge. Conclusion: Our data suggested that outcomes using DCD allografts have improved, however biliary complications remain a significant issue in DCD transplantation. Patients who experienced post-operative biliary complications during index admission may require more frequent screening to allow the initiation of earlier treatment for biliary complications.
Effective communication in clinician-patient relationships is an essential part of improving health outcomes. Ineffective communication in clinical settings leaves patients feeling undervalued and unheard. Breakdowns in communication can have particularly profound effects on minority or underserved populations, where health disparities already exist. Effective communication is critical for establishing trust, which allows individuals to feel they can share their concerns and questions. Distrust is a particularly important issue in maternal health, where current US rates of maternal mortality and morbidity are 3.1 times higher in Black and African American (AA) pregnant and birthing persons than their non-Hispanic white counterparts. To address the widespread issue of medical distrust and its connection with maternal health outcomes, the OPTIMIZE study is currently implementing an innovative intervention aimed at improving perinatal care for Black/AA pregnant persons. This intervention prompts clinician-patient conversations to enhance communication and repair trust, including a focus on patients’ goals, concerns, social determinants of health, and safety. The implications of this intervention are broad, including the potential to improve trust and communication in other clinical specialties.
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