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BACKGROUND: Tumor genomic profiling (TGP) identifies targets for precision cancer treatments, but also secondary hereditary risks. Oncologists are poorly trained to communicate the results of TGP, especially among patients with lower health literacy, poorer genetics knowledge, and higher mistrust. African American (AA) patients are especially vulnerable to poor understanding due to significant cancer disparities and lower uptake of TGP. The goal of this research is to inform the development of an internet-based brief educational support for oncologists to prepare them to provide better decisional support related to TGP for their AA cancer patients. METHODS: This mixed-methods study used semi-structured interviews of oncologists to inform development of an online survey with a convenience sample of US-based oncologists (n = 50) to assess perceptions of the challenges of TGP and communicating results to AA patients. RESULTS: Most interviewed oncologists felt it was important to consider racial/cultural differences when communicating about hereditary risks. Cost, family dynamics, discrimination concerns, and medical mistrust were identified as particularly salient. Survey respondents' views related to AAs and perceptions of TGP were strongly associated with years since completing training, with recent graduates expressing stronger agreement with statements identifying barriers/disadvantages to TGP for AA patients. CONCLUSIONS: Oncologists who had more recently completed training expressed more negative perceptions of TGP and more perceived challenges in communicating about TGP with their AA patients. Focused training for oncologists that addresses barriers specific to AAs may be helpful in supporting improved communication about TGP and improved decisional support for AA patients with cancer considering TGP to evaluate their tumors.
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Neoplasias , Humanos , Negro o Afroamericano/genética , Genómica , Neoplasias/genética , Oncólogos , Confianza , Factores de Riesgo , Comunicación , Relaciones Médico-PacienteRESUMEN
INTRODUCTION: Populations at risk for HIV infection-including gay, bisexual, and other men who have sex with men (GBM) and transgender/gender diverse people (TGD)-are at disproportionate risk for anal cancer. Most anal cancers are caused by human papillomavirus (HPV) and are preventable with HPV vaccination and screening. Engaging at-risk populations who are already receiving HIV preventive care (eg, pre-exposure prophylaxis [PrEP]) may be an effective implementation strategy. The purpose of this study was to (1) identify the information, motivation, and behavioral skills that influence decisions about anal cancer prevention and to (2) describe the healthcare utilization patterns among PrEP users that impact their engagement in anal cancer prevention. METHODS: Using purposive sampling in the United States, we ensured diverse representation among PrEP users aged 18 to 45 across gender and ethnoracial identities. Recruitment sources included primary healthcare clinics, social media, and community venues. Semi-structured interviews were recorded, transcribed, and coded using structural, pattern, and theoretical approaches. RESULTS: Participants (N = 36) were mostly cisgender gay ethnoracial minority men. We identified 29 unique codes that were nested within 3 categories: individual decision-making, healthcare utilization patterns, and healthcare system influences. Participants commonly lacked essential information about HPV and anal cancer, often holding misconceptions about risks and prevention. Motivation for anal cancer prevention was driven by healthcare interactions and perceived risks, while fragmented healthcare and reliance on telemedicine were potential barriers. Many participants used telehealth services to access PrEP, described it as convenience, cost-effective, and liked the lack of provider interaction. Some participants used telehealth for PrEP and did not have a primary care provider. The importance of access to LGBTQ+-affirmative healthcare services was highlighted. CONCLUSIONS: Integrating patient education and prevention services into ongoing PrEP management can enhance the reach and equity of anal cancer prevention. Our model underscores critical areas of misinformation, necessary systems-level changes, and unmet needs.
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Neoplasias del Ano , Infecciones por VIH , Profilaxis Pre-Exposición , Humanos , Neoplasias del Ano/prevención & control , Masculino , Adulto , Femenino , Infecciones por VIH/prevención & control , Persona de Mediana Edad , Adulto Joven , Adolescente , Minorías Sexuales y de Género/estadística & datos numéricos , Infecciones por Papillomavirus/prevención & control , Conocimientos, Actitudes y Práctica en Salud , Estados Unidos , Aceptación de la Atención de Salud/estadística & datos numéricos , Motivación , Homosexualidad MasculinaRESUMEN
Tumor genomic profiling (TGP) examines genes and somatic mutations specific to a patient's tumor to identify targets for cancer treatments but can also uncover secondary hereditary (germline) mutations. Most patients are unprepared to make complex decisions related to this information. Black/African American (AA) cancer patients are especially at risk because of lower health literacy, higher levels of medical mistrust, and lower awareness and knowledge of genetic testing. But little is known about their TGP attitudes or preferences. Five in-person focus groups were conducted with Black/AA cancer patients (N = 33) from an NCI-designated cancer center and an affiliated oncology unit in an urban safety-net hospital located in Philadelphia. Focus groups explored participants' understanding of TGP, cultural beliefs about genetics, medical mistrust, and how these perceptions informed decision-making. Participants were mostly female (81.8%), and one-third had some college education; mean age was 57 with a SD of 11.35. Of patients, 33.3% reported never having heard of TGP, and 48.5% were not aware of having had TGP as part of their cancer treatment. Qualitative analysis was guided by the principles of applied thematic analysis and yielded five themes: (1) mistrust of medical institutions spurring independent health-information seeking; (2) genetic testing results as both empowering and overwhelming; (3) how provider-patient communication can obviate medical mistrust; (4) how unsupportive patient-family communication undermines interest in secondary-hereditary risk communication; and (5) importance of developing centralized patient support systems outside of treatment decisions. Results improve understanding of how Black/AA patients perceive of TGP and how interventions can be developed to assist with making informed decisions about secondary hereditary results.
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BACKGROUND: The United States opioid crisis has been worsened by the emergence of fentanyl adulterated or associated with the veterinary sedative xylazine. Designated by the White House as an "emerging threat to the US" in 2023, xylazine use is associated with severe skin wounds. METHODS: This research explored beliefs, concerns, and treatment behaviors for skin wounds among 93 participants recruited outside of a Philadelphia, Pennsylvania harm reduction agency who reported past-6-month history of a skin wound via a cross-sectional survey administered August-September 2022 (group 1; n = 33). Following a December 2022 Philadelphia Department of Public Health Report that indicated xylazine was becoming more prevalent in the Philadelphian drug supply, additional data was collected with new participants from February-March 2023 (group 2; n = 60) using the same survey. Participants were ≥18 years old, reported past-year fentanyl use, and spoke English. Our 17-item tool measured skin wound-related beliefs, concerns, treatment behaviors, and treatment sources. An open-response item explored why participants self-treat skin wounds. RESULTS: Participants averaged 41 years old (SD = 9), slightly more than half were men (n = 54, 58%), 31% (n = 29) were non-White, and most (n = 66, 71%) were unhoused. Overall, 79% of participants self-treated skin wounds. Participants endorsed worry about limb loss (n = 77; 83%), wound shame (n = 76; 82%), and appearance changes (n = 80; 86%). Sixty participants (65%) reported waiting to see wound severity before seeking care. Forty-one participants (44%) delayed wound care because of withdrawal fears. CONCLUSIONS: People with probable xylazine-associated skin wounds have psychosocial concerns about and self-treat these wounds. Findings may be a harbinger of skin wound harm in other regions of the United States and internationally where xylazine is increasing.