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1.
Gynecol Oncol ; 184: 103-110, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38301308

RESUMO

OBJECTIVE: Participation in therapeutic clinical trials does not reflect the diversity of gynecologic cancer patients, limiting access to novel therapeutics and generalizability of results. Reasons for inequities in participation among historically underrepresented populations remain undertheorized, as studies have shown equal willingness to participate among groups. We sought to apply a precarity framework to conceptualize the factors that impact patients' desire to enroll, to improve equity in gynecologic oncology clinical trial participation. METHODS: Gynecologic cancer patients at a single tertiary care facility in the Southwestern United States who discussed participation in therapeutic clinical trial with their oncology provider from 2020 to 2021 were identified. Enrolled participants completed surveys and qualitative interviews regarding treatment experiences and decision-making. Oncology providers completed parallel surveys at the time of their patient's enrollment. Descriptive statistics and thematic coding were used to analyze data. RESULTS: 30 patients were enrolled and participated in surveys and interviews. No differences were found in quantitative data assessing shared decision-making and patient-centered communication between those who enrolled and those who did not. Qualitative data demonstrated that patients who declined trial enrollment expressed concerns regarding uncertainty and loss of control, independence in decision-making, and significant resource challenges and financial toxicity of cancer treatment. CONCLUSIONS: We identified a constellation of factors that contribute to desire to enroll in clinical trials, that we describe using the framework of precarity. Through identification of precarious patients and mitigation of burdens, we anticipate improved enrollment and retention in therapeutic clinical trials among diverse gynecologic oncology patients.


Assuntos
Ensaios Clínicos como Assunto , Neoplasias dos Genitais Femininos , Humanos , Feminino , Neoplasias dos Genitais Femininos/terapia , Neoplasias dos Genitais Femininos/psicologia , Pessoa de Meia-Idade , Adulto , Idoso , Tomada de Decisões , Participação do Paciente , Seleção de Pacientes , Pesquisa Qualitativa , Inquéritos e Questionários , Tomada de Decisão Compartilhada
2.
J Cancer Educ ; 2024 May 31.
Artigo em Inglês | MEDLINE | ID: mdl-38819526

RESUMO

Over the last two decades, strides in cancer prevention, earlier detection, and novel treatments have reduced overall cancer mortality; however, cancer health disparities (CHD) persist among demographically diverse and intersecting populations. The development of a culturally responsive workforce trained in interdisciplinary, team-based science is a key strategy for addressing these cancer disparities. The Cancer Research - Scholarship and Training Experience in Population Sciences (C-STEPS) program at the University of New Mexico Comprehensive Cancer Center is designed to increase and diversify the biomedical and behavioral research workforce by providing specialized and experiential curricula that highlight team-oriented cancer control and population science. Undergraduate students interested in CHD and in pursuing STEM-H (science, technology, engineering, mathematics, and health) graduate or professional degrees are eligible for the program. C-STEPS students are paired with a UNM faculty mentor, who guides the student's 10-week summer research experience. They receive mentorship and support from three layers-faculty, near-peers (graduate students), and peers (undergraduates who have completed the C-STEPS program previously). Students generate five products, including a capstone presentation, grounded in the research they conduct with their faculty mentors. Since its founding in 2021, C-STEPS has trained three cohorts with a total of 32 students. The C-STEPS program provides a unique team-science approach with multilayer mentoring to create a sustainable pipeline for the development of students interested in STEM-H fields and CHD research. The capstone project led to 47% of students presenting their work at conferences, and two publishing their manuscripts in peer-reviewed journals. Overall, 89% of students were either "satisfied" or "very satisfied" with the program and the same percentage recommended the program to other undergraduates.

3.
Cancer Causes Control ; 34(7): 563-568, 2023 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-37145262

RESUMO

INTRODUCTION: The COVID-19 pandemic created new challenges for cancer patients and caregivers. Little is known about the confluence of the pandemic and people with multiple marginalized identities, such as those in the Sexual and Gender Minority (SGM) community. METHODS: We conducted a mixed-methods pilot study using semi-structured interviews to elicit experiences of cancer among a diverse population of SGM patients and caregivers and a matched set of cisgender heterosexual (cishet) individuals. Here, we present qualitative findings focused on caregiver experiences as ascertained from the broader study. RESULTS: We discovered differences between SGM and cishet caregiving experiences, with SGM caregivers reporting less comfort in the cancer center environment; dissatisfaction with patient-provider communication; feeling excluded from their loved ones' care; and increased social isolation resulting from the caregiver experience. SGM and cishet caregivers described the detrimental impact of the pandemic. CONCLUSION: Our data suggest SGM caregivers experience additional burdens to cancer caregiving when compared to cishet peers. Although SGM and cishet caregivers reported challenges stemming from the COVID-19 pandemic, challenges appeared greater and more acute for SGM caregivers. Pandemic-related findings point to overall gaps in SGM cancer caregiver supports that may be remedied by additional research and targeted intervention development.


Assuntos
COVID-19 , Neoplasias , Minorias Sexuais e de Gênero , Humanos , Cuidadores , Projetos Piloto , Pandemias , COVID-19/epidemiologia , Comportamento Sexual , Neoplasias/epidemiologia
4.
J Cancer Educ ; 38(3): 1066-1076, 2023 06.
Artigo em Inglês | MEDLINE | ID: mdl-36399283

RESUMO

The purpose of this study is to describe the context, curriculum design, and pilot evaluation of the educational program "Sexual and Gender Minority Cancer Curricular Advances for Research and Education" (SGM Cancer CARE), a workshop for early-career researchers and healthcare providers interested in gaining knowledge and skills in sexual and gender minority (SGM) cancer research and healthcare advocacy. A needs assessment of a sample of clinicians and researchers (n = 104) and feedback from an Advisory Board informed the curriculum design of the SGM Cancer CARE workshop. Four SGM-tailored modules, focusing on epidemiology, clinical research, behavioral science and interventions, and community-based participatory approaches, were developed and tested in a 2.5-day virtual format among 19 clinicians and researchers. A fifth module to provide feedback to participants on brief presentations about their SGM cancer research ideas or related efforts was added later. A mixed-methods evaluation comprised of pre- and post-modular online evaluation surveys and virtual focus groups was used to determine the degree to which the workshop curriculum met participant needs. Compared to pre-module evaluations, participants reported a marked increase in SGM cancer research knowledge in post-module scores. Quantitative results were supported by our qualitative findings. In open field response survey questions and post-workshop focus groups, participants reported being extremely pleased with the content and delivery format of the SGM Cancer CARE workshop. Participants did regret not having the opportunity to connect with instructors, mentors, and colleagues in person. The SGM Cancer CARE curriculum was shown to increase the knowledge, skills, and level of preparedness of early-career clinicians and scientists to conduct culturally relevant and appropriate research needed to improve care for SGM persons across the cancer care continuum from prevention to survivorship.


Assuntos
Equidade em Saúde , Neoplasias , Minorias Sexuais e de Gênero , Humanos , Currículo , Neoplasias/prevenção & controle , Escolaridade
5.
Support Care Cancer ; 29(9): 5021-5028, 2021 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-33587174

RESUMO

BACKGROUND: Survivorship care plans (SCPs) summarize patients' treatment and act as an education and communication tool between oncologists and primary care providers (PCPs). But creation and delivery of SCPs are challenging, labor intensive, and costly. The University of New Mexico Comprehensive Cancer Center (UNM CCC) treats a poor, rural, and minority patient population, and our purpose was to implement and evaluate a process to create and deliver SCPs to patients and PCPs. METHODS: Providers placed an electronic SCP order, basic information was imported, and staff compiled treatment details. Flagged SCPs were then ready for delivery, providers approved of and delivered the SCP at the next encounter, and the SCP was sent to the PCP. RESULTS: By April 2020, 283 SCPs were ordered, 241 (85.2%) were created by the designated staff, and 97 (34.2%) were given to patients after definitive therapy for breast cancer (59.1%), gynecological cancers (10.8%), prostate cancer (7.4%), colorectal cancer (5.1%), and lymphomas (4.8%). Of 97 SCPs eligible to be sent to PCPs, 75 (77.3%) were mailed or sent via EMR. Of the 41 (48.9%) SCPs sent via mail or fax, only 8 (8.3%) were received and 5 (5.2%) integrated. CONCLUSIONS: This study shows that SCPs can be delivered to patients in a poor, rural, and minority patient population but that PCP receipt and integration of SCPs are poor. Future efforts need to ensure that an oncologist to PCP education and communication tool is able reach and be integrated by PCPs.


Assuntos
Neoplasias , Planejamento de Assistência ao Paciente , Continuidade da Assistência ao Paciente , Feminino , Pessoal de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/terapia , Atenção Primária à Saúde , Sobrevivência
6.
J Cancer Educ ; 35(1): 44-53, 2020 02.
Artigo em Inglês | MEDLINE | ID: mdl-30377952

RESUMO

Reducing health disparities for sexual and gender minority (SGM) people is a priority of the National Institutes of Health. SGM populations face barriers in cancer prevention, treatment, and survivorship care. These barriers are due to deficits in researcher and provider training and education, as well as limited National Cancer Institute funding opportunities directed at the many different SGM populations. SGM status intersects with race and ethnicity, education, geography, and poverty to exacerbate disparities further. SGM cancer research will inform SGM patient cancer care guidelines and promote best practices in care among cancer providers. Cancer professionals may benefit from tailored training to enhance their research readiness for SGM cancer care. Research readiness can promote conduct of high-impact SGM cancer research and expand the limited knowledge of SGM cancer care disparities. Here, we propose a coordinated national plan for the training and education of health science researchers and oncology providers as a key strategy to reduce SGM cancer health disparities experienced along the cancer care continuum. We describe unrecognized clinical cancer care needs of SGM patients and unmet opportunities for research partnership and offer strategies for developing flexible educational training programs, courses, and workshops to prepare researchers and healthcare providers to promote health equity and quality cancer care for members of the SGM community.


Assuntos
Equidade em Saúde/normas , Pessoal de Saúde/estatística & dados numéricos , Disparidades em Assistência à Saúde/normas , Neoplasias/terapia , Guias de Prática Clínica como Assunto/normas , Pesquisadores/estatística & dados numéricos , Minorias Sexuais e de Gênero/educação , Humanos , Oncologia , National Cancer Institute (U.S.) , Estados Unidos
7.
J Gen Intern Med ; 33(12): 2056-2064, 2018 12.
Artigo em Inglês | MEDLINE | ID: mdl-29998436

RESUMO

BACKGROUND: Accumulating evidence suggests that clinician racial/gender decision-making biases in some instances contribute to health disparities. Previous work has produced evidence of such biases in medical students. OBJECTIVE: To identify contextual attributes in medical schools associated on average with low levels of racial/gender clinical decision-making biases. DESIGN: A mixed-method design using comparison case studies of 15 medical schools selected based on results of a previous survey of student decision-making bias: 7 schools whose students collectively had, and 8 schools whose students had not shown evidence of such biases. PARTICIPANTS: Purposively sampled faculty, staff, underrepresented minority medical students, and clinical-level medical students at each school. MAIN MEASURES: Quantitative descriptive data and qualitative interview and focus group data assessing 32 school attributes theorized in the literature to be associated with formation of decision-making and biases. We used a mixed-method analytic design with standard qualitative analysis and fuzzy set qualitative comparative analysis. KEY RESULTS: Across the 15 schools, a total of 104 faculty, administrators and staff and 21 students participated in individual interviews, and 196 students participated in 29 focus groups. While no single attribute or group of attributes distinguished the two clusters of schools, analysis showed some contextual attributes were seen more commonly in schools whose students had not demonstrated biases: longitudinal reflective small group sessions; non-accusatory approach to training in diversity; longitudinal, integrated diversity curriculum; admissions priorities and action steps toward a diverse student body; and school service orientation to the community. CONCLUSIONS: We identified several potentially modifiable elements of the training environment that are more common in schools whose students do not show evidence of racial and gender biases.


Assuntos
Atitude do Pessoal de Saúde , Tomada de Decisão Clínica/métodos , Racismo/psicologia , Faculdades de Medicina , Sexismo/psicologia , Estudantes de Medicina/psicologia , Estudos Transversais , Feminino , Humanos , Incidência , Masculino , Racismo/tendências , Faculdades de Medicina/tendências , Sexismo/tendências
8.
Med Anthropol Q ; 32(2): 233-253, 2018 06.
Artigo em Inglês | MEDLINE | ID: mdl-28556358

RESUMO

We conducted a study in early 2014 to document how the initial implementation of the Affordable Care Act (ACA) affected health care provision to different categories of immigrants from the perspective of health care providers in New Mexico. Though ACA navigators led enrollment, a range of providers nevertheless became involved by necessity, expressing concern about how immigrants were faring in the newly configured health care environment and taking on advocacy roles. Providers described interpreting shifting eligibility and coverage, attending to vulnerable under/uninsured patients, and negotiating new bureaucratic barriers for insured patients. Findings suggest that, like past efforts, this recent reform to the fragmented health care system has perpetuated a condition in which safety-net clinics and providers are left to buffer a widening gap for immigrant patients. With possible changes to the ACA ahead, safety-net providers' critical buffering roles will likely become more crucial, underscoring the necessity of examining their experiences with past reforms.


Assuntos
Emigrantes e Imigrantes , Acessibilidade aos Serviços de Saúde , Patient Protection and Affordable Care Act , Provedores de Redes de Segurança/etnologia , Adulto , Antropologia Médica , Criança , Feminino , Pessoal de Saúde , Humanos , Masculino , New Mexico/etnologia
9.
Gynecol Oncol ; 145(2): 334-339, 2017 05.
Artigo em Inglês | MEDLINE | ID: mdl-28325583

RESUMO

OBJECTIVES: This study describes patient and provider attitudes on transitioning cancer surveillance visits and treatment of comorbid conditions to the primary care setting in a rural patient population as a strategy for minimizing financial and travel related barriers for patients while simultaneously enhancing quality and availability of health care options. METHODS: Focus group discussions and telephone interviews were conducted with endometrial cancer (EC) survivors and primary care providers (PCPs) to provide insights into post-treatment follow-up practices and the acceptability of transitioning follow-up to primary care setting utilizing a cancer survivorship care plan model. RESULTS: EC survivors expressed high levels of satisfaction with their oncology care and suggested that transitioning to PCPs for follow-up care would be convenient yet challenging. Challenges cited include: 1) patient perceptions of deficits in PCP's understandings of cancer surveillance; 2) inability to identify a personal PCP; and 3) lack of communication between oncologists and PCPs. PCP participants similarly identified the need for extensive EC training and effective communication strategies with oncologists as necessary factors for accepting responsibility for EC follow-up care. Both groups offered strategies to create a more team based approach to EC survivorship care. CONCLUSIONS: Increasing the role of the PCP in the ongoing care of EC survivors was generally considered acceptable by both patients and providers in both rural and urban women. Successful coordination of care between cancer survivors, oncologists and PCPs will be a critical step in improving the cancer care delivery of our rural patient and provider population.


Assuntos
Neoplasias do Endométrio/psicologia , Neoplasias do Endométrio/terapia , Acessibilidade aos Serviços de Saúde , Área Carente de Assistência Médica , Planejamento de Assistência ao Paciente , Atitude do Pessoal de Saúde , Continuidade da Assistência ao Paciente , Neoplasias do Endométrio/mortalidade , Feminino , Humanos , New Mexico/epidemiologia , Satisfação do Paciente , População Rural , Sobreviventes
10.
J Gen Intern Med ; 30(6): 758-67, 2015 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-25623298

RESUMO

BACKGROUND: Research suggests stereotyping by clinicians as one contributor to racial and gender-based health disparities. It is necessary to understand the origins of such biases before interventions can be developed to eliminate them. As a first step toward this understanding, we tested for the presence of bias in senior medical students. OBJECTIVE: The purpose of the study was to determine whether bias based on race, gender, or socioeconomic status influenced clinical decision-making among medical students. DESIGN: We surveyed seniors at 84 medical schools, who were required to choose between two clinically equivalent management options for a set of cardiac patient vignettes. We examined variations in student recommendations based on patient race, gender, and socioeconomic status. PARTICIPANTS: The study included senior medical students. MAIN MEASURES: We investigated the percentage of students selecting cardiac procedural options for vignette patients, analyzed by patient race, gender, and socioeconomic status. KEY RESULTS: Among 4,603 returned surveys, we found no evidence in the overall sample supporting racial or gender bias in student clinical decision-making. Students were slightly more likely to recommend cardiac procedural options for black (43.9 %) vs. white (42 %, p = .03) patients; there was no difference by patient gender. Patient socioeconomic status was the strongest predictor of student recommendations, with patients described as having the highest socioeconomic status most likely to receive procedural care recommendations (50.3 % vs. 43.2 % for those in the lowest socioeconomic status group, p < .001). Analysis by subgroup, however, showed significant regional geographic variation in the influence of patient race and gender on decision-making. Multilevel analysis showed that white female patients were least likely to receive procedural recommendations. CONCLUSIONS: In the sample as a whole, we found no evidence of racial or gender bias in student clinical decision-making. However, we did find evidence of bias with regard to the influence of patient socioeconomic status, geographic variations, and the influence of interactions between patient race and gender on student recommendations.


Assuntos
Atitude do Pessoal de Saúde , Tomada de Decisão Clínica , Disparidades em Assistência à Saúde/etnologia , Grupos Raciais , Classe Social , Estudantes de Medicina , Adulto , Viés , Feminino , Pesquisas sobre Atenção à Saúde , Humanos , Masculino , Preconceito/psicologia , Fatores Sexuais
11.
Med Educ ; 49(6): 634-7, 2015 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-25989411

RESUMO

CONTEXT: Advances in communication technologies over the last two decades have transformed the way medical education research is conducted, creating opportunities for multi-institution national and international studies. Although these studies enable researchers to gain broader understandings of educational processes across institutions, they increase the need for multiple institutional review board (IRB) reviews to ensure the protection of human subjects. OBJECTIVES: This study describes the process of obtaining multiple IRB approvals of the same protocol for a multi-site, low-risk, medical education research project in the USA. The burden of obtaining those reviews and their consistency are assessed. The associated time and costs, and implications for the research process are detailed. METHODS: Following review by the investigators' parent institution IRB, the project team circulated a uniform protocol for conduct of a low-risk, medical education survey to the IRBs of 89 US medical schools for review. The processes and time required to obtain approvals were recorded to estimate associated research team personnel costs. RESULTS: Approval could not be obtained from five IRBs as a result of insurmountable procedural barriers. A total of 67 IRBs eventually deferred to the parent IRB determination. The remaining IRBs required a variety of additional procedural processes before ultimately agreeing with the original determination. The personnel costs associated with obtaining the 84 approvals amounted to US$121,344. CONCLUSIONS: Considering the value of multi-site designs to address a range of research questions, enhance participant diversity and develop representative findings, solutions must be found to counter inefficiencies of current IRB review processes for low-risk research, such as that usually conducted in medical education. Although we acknowledge that local review is an essential protective measure for research involving identifiable communities that are uniquely susceptible to social or economic harm, this report suggests that proposals to modernise and streamline IRB review processes for low-risk research are timely and relevant.


Assuntos
Pesquisa Biomédica/ética , Comitês de Ética em Pesquisa/normas , Faculdades de Medicina/ética , Comitês de Ética em Pesquisa/economia , Humanos , Projetos de Pesquisa , Pesquisadores , Estudantes de Medicina , Estados Unidos
12.
Am J Hosp Palliat Care ; : 10499091231212666, 2023 Nov 02.
Artigo em Inglês | MEDLINE | ID: mdl-37918391

RESUMO

PURPOSE: For sexual and gender minority (SGM) individuals who identify as lesbian, gay, bisexual, transgender, queer, or any other sexual orientation or gender identity (LGBTQ+), the quality of palliative care can depend upon how clinicians view and communicate with this historically minoritized group. Prior literature has demonstrated that SGM patients access care at lower rates, and palliative care clinicians have suggested that SGM patients are more likely to experience discrimination than heterosexual patients. This study examined palliative care clinicians' perspectives and experiences regarding patient communication, care settings, the built environment, and inclusive care for SGM older adults with serious illness. METHODS: The health disparities research framework informed a descriptive qualitative analysis of interview data with palliative care professionals (N = 20) across diverse healthcare settings within Colorado regarding their experiences and beliefs about communication and the care of SGM patients. RESULTS: Three main themes emerged: (1) Limited sexual orientation and gender identity (SOGI) data collection; (2) Organizational and environmental inclusivity, and the "neutral" space viewed as safe; (3) Missing training platforms regarding SGM patients and a lack of opportunity to identify and discuss SGM patient needs. CONCLUSION: Study findings illuminated the following barriers to providing SGM-inclusive care: perspectives around (1) limitations and preferences regarding collection of SOGI data, (2) organizational and environmental inclusivity, and (3) education and training regarding cultural humility and communication with SGM patients. Findings indicate the need for multidimensional research to better understand and address SGM health disparities and promote equitable care.

13.
J Cancer Surviv ; 2023 Oct 27.
Artigo em Inglês | MEDLINE | ID: mdl-37889397

RESUMO

PURPOSE: Current early-stage breast and gynecological cancer care models often begin with a referral from a primary care provider (PCP) or gynecologist (OB/Gyn) and end with a patient being transitioned back to the referring provider at the completion of treatment. There is frequently little communication between oncologists and the referring provider during treatment, and this pattern continues after the patient completes their treatment. METHODS: We convened a diverse Patient Advisory Board (PAB) to identify areas where breast or gynecological cancer patients felt they could benefit from additional support during and after their cancer care. PAB members attended five Zoom meetings and completed four online surveys. Semi-structured interviews were conducted with primary care or OB/Gyn physicians to collect information on current practices. RESULTS: Patients identified multiple areas in which they needed additional support from their PCP. Providers also identified topics on which they could use additional training. However, there was little overlap between patient and provider priority topics. Both patients and providers agreed that there was inadequate communication between the cancer center and PCPs before, during, and after cancer treatment. CONCLUSIONS: A shared-care model that emphasizes communication between primary care providers, the oncology care team, and patients is urgently needed. Patients indicated the need for additional support from their PCP on specific topics, and PCPs were interested in continuing their education to better serve their patients with cancer. IMPLICATIONS FOR CANCER SURVIVORS: The importance of consistent communication among all parties during the entire cancer journey was emphasized as a key area for improvement.

14.
Front Health Serv ; 2: 901440, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36925831

RESUMO

Introduction: Access and utilization barriers in primary care clinics contribute to health disparities that disproportionately affect lesbian, gay, bisexual, transgender, and queer (LGBTQ+) people. Implementing inclusive practice guidelines in these settings may decrease disparities. The purpose of this exploratory/developmental study is to identify key issues affecting the readiness of primary care clinics to implement such guidelines. Methods: Using a concurrent mixed-method research design, we conducted surveys, interviews, and focus groups with 36 primary care personnel in clinics in New Mexico, USA, to examine readiness to implement LGBTQ+ inclusive guidelines, analyzing factors affecting motivation, general organizational capacity, and innovation-specific capacity. We supplemented these data by documenting LGBTQ+ inclusive policies and practices at each clinic. We undertook descriptive analyses and between-subscale comparisons controlling for within-rater agreement of the survey data and iterative coding and thematic analysis of the qualitative data. Results: Quantitatively, participants reported significantly more openness toward adopting guidelines and attitudinal awareness for developing LGBTQ+ clinical skills than clinical preparedness, basic knowledge, and resources to facilitate implementation. Six themes derived from the qualitative findings corroborate and expand on these results: (1) treating all patients the same; (2) addressing diversity in and across LGBTQ+ populations; (3) clinic climates; (4) patient access concerns; (5) insufficient implementation support; and (6) leadership considerations. Conclusion: This study demonstrates that personnel in primary care clinics support initiatives to enhance service environments, policies, and practices for LGBTQ+ patients. However, drawing on Iris Young's theory of structural injustice, we found that neutralizing discourses that construct all patients as the same and time/resource constraints may diminish motivation and capacity in busy, understaffed clinics serving a diverse clientele and reinforce inequities in primary care for LGBTQ+ people. Efforts are needed to build general and innovation-specific capacities for LGBTQ+ initiatives. Such efforts should leverage implementation teams, organizational assessments, education, leadership support, community engagement, and top-down incentives.

15.
Front Oncol ; 12: 833195, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35600396

RESUMO

Purpose: Up to 1 million lesbian, gay, bisexual, and transgender (i.e., sexual and gender minority, SGM) individuals in the United States have histories of cancer. This medically underserved population is diverse, with complex sexualities and gender identities, and distinct health concerns. SGM persons experience disproportionate risks for, and rates of, anal, breast, cervical, colorectal, endometrial, lung, and prostate cancers, in addition to cancers affecting transgender persons who have undergone sex-reassignment. SGM individuals are linked by shared experiences of stigmatization as a minority population for which little cancer research has been conducted. SGM cancer patients frequently report reluctance to seek healthcare, have poorer outcomes following diagnosis, engage in elevated risk behaviors (i.e. smoking and alcohol use) even after cancer diagnosis, have difficulty making emotional adjustment to illness, and experience higher rates of psychological distress. They report less satisfaction with cancer care, deficiencies in patient-centeredness and shared decision-making, gaps in care, and social isolation. Minority stress resulting from experiences of anti-SGM sentiment and discrimination affects cancer patients and their informal cancer caregivers. Our paper presents findings from a pilot study to identify gaps and opportunities to improve cancer care for SGM patients and caregivers at the University of New Mexico Comprehensive Cancer Center. Methods: Between June 2020 and July 2021, we used a multi-methods research design informed by ecological theory to collect qualitative and quantitative data regarding cancer patient and caregiver quality of life (QoL) and experiences of cancer and survivorship care. We used PROMIS measures distributed via REDCap to assess QoL (i.e., fatigue, pain interference, pain intensity, anxiety, depression, emotional support, social isolation, and companionship), and conducted in-depth semi-structured interviews. We recruited 10 SGM cancer patients and 8 heterosexual, cisgender (H/C) patient matches, and their self-identified informal cancer caregivers (n=36, dyad total n=18). Interviews ranged from 1 to 2 hours, were audio-recorded and transcribed for analysis. The study was approved by the University of New Mexico Human Research Protections Office Institutional Review Board. Results: Results of the PROMIS QoL assessments indicated that SGM patients reported greater anxiety [mean (SD) = 54.5 (8.8)] and depression [mean (SD) = 49.3 (4.8)] than H/C patients [mean (SD)=51.6 (7.5) and 45.4 (6.8) respectively], while heterosexual, cisgender (H/C) patients reported higher fatigue [mean (SD) =52.04 (8.18)] and stronger pain intensity than SGM patients [mean (SD)=48.3 (9.1) and 37.8 (9.1) respectively]. SGM patients reported higher levels of social isolation [mean (SD) = 48.3 (7.3) vs. 42.1 (7.4) for H/C patients, whereas H/C patients reported more emotional support (mean (SD) =57.5 (9.3) vs. 53.0 (6.9)] and companionship [mean (SD) = 55.2 (8.6) vs. 51.5 (11.0)]. SGM and H/C differences in caregiver QoL were most notable with regards to higher levels of fatigue [mean (SD) = 47.1 (6.0) for SGM, and 42.4 (11.5) for H/C] and companionship [mean (SD) = 55.3 (6.0) for SGM, and 50.9 (5.5) for H/C]. Qualitative interviews supported our quantitative results. SGM patients and caregivers articulated experiences of anti-SGM stigma and discrimination contributing to minority stress that influenced their initial cancer care encounters. SGM dyads had more trepidation and/or medical mistrust during initial cancer care encounters when compared to H/C patients and caregivers. SGM patients questioned care that was not culturally responsive to SGM preferences, while H/C patients were more apt to identify gaps in communication and perceived lack of clarity regarding cancer care delivery. Although SGM patients experienced high satisfaction with their cancer care once they developed trust with their providers, they discussed desires to have more direct conversations with their oncologists about their sexual orientation and gender identities and sexual health. All patients and providers in the study (SGM and H/C) appreciated their oncology care teams. All patients and caregivers relied on social networks comprised of friends and family, although SGM patients and caregivers had smaller social networks and relied less on biological family, and single SGM individuals experienced challenges accessing cancer care and struggled with social isolation. We discovered too, that all caregivers, regardless of Sexual Orientation and Gender Identity (SOGI), perceived a lack of support and information pertaining to their loved one's treatment, side effects and best way to provide care. Conclusions: This study demonstrates that prior stigmatizing experiences contribute to minority stress and medical mistrust for SGM cancer patients and their informal caregivers across the cancer care experience. Findings point to specific gaps in SGM cancer patient care, including lack of conversation about patient SOGI, inadequate staff and oncology provider SGM specific knowledge and cultural competence/cultural humility training, and insufficient patient supports for those who lack social support during cancer care treatment. Further, this study reveals inadequacies in SGM specific support, and overall support services for informal cancer caregivers. Additional research is required to develop targeted interventions to address minority stress and clinic environment concerns to improve cancer care for SGM patients. Importantly, while there were differences between SGM and H/C experiences of cancer treatment, significant similarities also emerged. Caregiver expressed consensus about the current lack of support and guidance for informal caregivers of cancer patients. Future work should focus on providing caregiver-specific resources in the clinic setting and facilitating support groups for caregivers to network with one another, as well as for tailoring SGM specific caregiver support services. Our findings highlight areas for improving cancer care for the SGM community, as well as a broader population of patients and caregivers.

16.
Front Oncol ; 12: 841951, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35756657

RESUMO

Purpose: Around 5% of United States (U.S.) population identifies as Sexual and Gender Diverse (SGD), yet there is limited research around cancer prevention among these populations. We present multi-pronged, low-cost, and systematic recruitment strategies used to reach SGD communities in New Mexico (NM), a state that is both largely rural and racially/ethnically classified as a "majority-minority" state. Methods: Our recruitment focused on using: (1) Every Door Direct Mail (EDDM) program, by the United States Postal Services (USPS); (2) Google and Facebook advertisements; (3) Organizational outreach via emails to publicly available SGD-friendly business contacts; (4) Personal outreach via flyers at clinical and community settings across NM. Guided by previous research, we provide detailed descriptions on using strategies to check for fraudulent and suspicious online responses, that ensure data integrity. Results: A total of 27,369 flyers were distributed through the EDDM program and 436,177 impressions were made through the Google and Facebook ads. We received a total of 6,920 responses on the eligibility survey. For the 5,037 eligible respondents, we received 3,120 (61.9%) complete responses. Of these, 13% (406/3120) were fraudulent/suspicious based on research-informed criteria and were removed. Final analysis included 2,534 respondents, of which the majority (59.9%) reported hearing about the study from social media. Of the respondents, 49.5% were between 31-40 years, 39.5% were Black, Hispanic, or American Indian/Alaskan Native, and 45.9% had an annual household income below $50,000. Over half (55.3%) were assigned male, 40.4% were assigned female, and 4.3% were assigned intersex at birth. Transgender respondents made up 10.6% (n=267) of the respondents. In terms of sexual orientation, 54.1% (n=1371) reported being gay or lesbian, 30% (n=749) bisexual, and 15.8% (n=401) queer. A total of 756 (29.8%) respondents reported receiving a cancer diagnosis and among screen-eligible respondents, 66.2% reported ever having a Pap, 78.6% reported ever having a mammogram, and 84.1% reported ever having a colonoscopy. Over half of eligible respondents (58.7%) reported receiving Human Papillomavirus vaccinations. Conclusion: Study findings showcase effective strategies to reach communities, maximize data quality, and prevent the misrepresentation of data critical to improve health in SGD communities.

17.
JAMA Health Forum ; 3(4)2022 04.
Artigo em Inglês | MEDLINE | ID: mdl-35755401

RESUMO

IMPORTANCE: Research into the genetic and genomic ("genomics") foundations of disease is central to our understanding of disease prevention, early detection, diagnostic accuracy, and therapeutic intervention. Inequitable participation in genomics research by historically excluded populations limits the ability to translate genomic knowledge to achieve health equity and ensure that findings are generalizable to diverse populations. OBSERVATIONS: We propose a novel framework for promoting diversity, equity, and inclusion in genomics research. Building on principles of community-based participatory research and collective impact frameworks, the framework can guide our understanding of the social, cultural, health system, policy, community, and individual contexts in which engagement and genomics research are being done. Our framework highlights the involvement of a multistakeholder team, including the participants and communities to be engaged, to ensure robust methods for recruitment, retention, return of genomic results, quality of engagement, follow-up, and monitoring of participants. CONCLUSIONS AND RELEVANCE: The proposed engagement framework will guide investigators in optimizing equitable representation in research and enhancing the rigor of genomics investigation.


Assuntos
Pesquisa Participativa Baseada na Comunidade , Equidade em Saúde , Pesquisa Participativa Baseada na Comunidade/métodos , Genômica , Humanos , Grupos Populacionais
18.
Acad Med ; 96(6): 894-899, 2021 06 01.
Artigo em Inglês | MEDLINE | ID: mdl-33637658

RESUMO

PURPOSE: Twenty years have passed since the Liaison Committee on Medical Education (LCME) mandated cultural competence training at U.S. medical schools. There remain multiple challenges to implementation of this training, including curricular constraints, varying interpretations of cultural competence, and evidence supporting the efficacy of such training. This study explored how medical schools have worked to implement cultural competence training. METHOD: Fifteen regionally diverse public and private U.S. medical schools participated in the study. In 2012-2014, the authors conducted 125 interviews with 52 administrators, 51 faculty or staff members, and 22 third- and fourth-year medical students, along with 29 focus groups with an additional 196 medical students. Interviews were recorded, transcribed, and imported into NVivo 10 software for qualitative data analysis. Queries captured topics related to students' preparedness to work with diverse patients, engagement with sociocultural issues, and general perception of preclinical and clinical curricula. RESULTS: Three thematic areas emerged regarding cultural competence training: formal curriculum, conditions of teaching, and institutional commitment. At the formal curricular level, schools offered a range of courses collectively emphasizing communication skills, patient-centered care, and community-based projects. Conditions of teaching emphasized integration of cultural competence into the preclinical years and reflection on the delivery of content. At the institutional level, commitment to institutional diversity, development of programs, and degree of prioritization of cultural competence varied. CONCLUSIONS: There is variation in how medical schools approach cultural competence. Among the 15 participating schools, longitudinal and experiential learning emerged as important, highlighting the needs beyond mere integration of cultural competence content into the formal curriculum. To determine efficacy of cultural competence programming, it is critical to conduct systematic assessment to identify and address gaps. While LCME standards have transformed aspects of medical education, further research is needed to clarify evidence-based, effective approaches to this training.


Assuntos
Competência Cultural , Currículo/tendências , Educação de Graduação em Medicina/tendências , Faculdades de Medicina , Comunicação , Relações Comunidade-Instituição , Feminino , Humanos , Entrevistas como Assunto , Masculino , Assistência Centrada no Paciente , Aprendizagem Baseada em Problemas , Estados Unidos
19.
Artigo em Inglês | MEDLINE | ID: mdl-34501517

RESUMO

Wearable activity trackers (WATs) hold great promise in increasing physical activity among older cancer survivors. However, older cancer survivors who reside in rural regions are at increased risk of being digitally marginalized. The goal of this study was to learn about WATs adoption motivation and needs of rural older cancer survivors who live in New Mexico, one of the most rural states with the lowest broadband Internet connectivity in the United States. We conducted six key informant interviews and recruited 31 older cancer survivors from rural counties statewide who participated in interviews and focus groups. Our results show great interest in using WATs as part of an intervention to alleviate barriers associated with the digital divide. Participants were offered diverse modalities to support them in adoption of the trackers. These results will be used to inform future interventions and policies focusing on increasing physical activity in older cancer survivors who reside in rural communities.


Assuntos
Sobreviventes de Câncer , Neoplasias , Telemedicina , Idoso , Exercício Físico , Monitores de Aptidão Física , Humanos , População Rural
20.
Cancers (Basel) ; 13(17)2021 Sep 02.
Artigo em Inglês | MEDLINE | ID: mdl-34503237

RESUMO

We conducted a survey to characterize the key attributes of racial/ethnic and geographically diverse low-risk breast and gynecologic cancer patients. We collected data regarding patients' access to primary care (PC); compliance with screening recommendations; treatment for comorbidities; logistical barriers to clinic visits; and receipt of survivorship care documentation (SCD). Survey findings informed the development of an oncology/Primary Care Provider (PCP) care coordination intervention to improve care. We distributed a cross-sectional survey among a convenience sample of 150 cancer survivors. Responses were calculated using descriptive statistics and compared based on the distance participants traveled to their appointments at the cancer center (≤30 vs. >30 miles). Of the 150 respondents, 35% traveled >30 miles for follow-up care and 78% reported having one or more comorbid condition(s). PC utilization was high: 88% reported having a PCP, and 91% indicated ≤1 yearly follow-up visit. Participants traveling >30 miles reported higher rates of logistical challenges associated with cancer center visits compared to those traveling ≤30 miles. Nearly half of respondents (46%) had not received SCD. In conclusion, survey studies such as these allow for the systematic assessment of survivor behaviors and care utilization patterns to inform the development of care coordination interventions for diverse, low-risk cancer patients.

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