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BACKGROUND: Individuals with cancer and other medical conditions often experience financial concerns from high costs-of-care and may utilize copay assistance programs (CAP). We sought to describe CAP recipients' experiences/preferences for cost discussions with clinicians. METHODS: We conducted a national, cross-sectional electronic-survey from 10/2022 to 11/2022 of CAP recipients with cancer or autoimmune conditions to assess patient perspectives on cost discussions. We used multivariable logistic regression models to explore associations of patient perspectives on cost discussions with patient characteristics and patient-reported outcomes (eg, financial toxicity, depression/anxiety, and health literacy). RESULTS: Among 1,566 participants, 71% had cancer and 29% had autoimmune conditions. Although 62% of respondents desired cost discussions, only 32% reported discussions took place. Additionally, 52% of respondents wanted their doctor to consider out-of-pocket costs when deciding the best treatment, and 61% of respondents felt doctors should ensure patients can afford treatment prescribed. Participants with depression symptoms were more likely to want doctors to consider out-of-pocket costs (ORâ =â 1.54, Pâ =â .005) and to believe doctors should ensure patients can afford treatment (ORâ =â 1.60, Pâ =â .005). Those with severe financial toxicity were more likely to desire cost discussions (ORâ =â 1.65, Pâ <â .001) and want doctors to consider out-of-pocket costs (ORâ =â 1.52, Pâ =â .001). Participants with marginal/inadequate health literacy were more likely to desire cost discussions (ORâ =â 1.37, Pâ =â .01) and believe doctors should ensure patients can afford treatment (ORâ =â 1.30, Pâ =â .036). CONCLUSIONS: In this large sample of CAP recipients with cancer and autoimmune conditions, most reported a desire for cost discussions, but under one-third reported such discussions took place.
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PURPOSE: Metastatic breast cancer (MBC) patients often face substantial financial burden due to prolonged and expensive therapy. However, in-depth experiences of financial burden among MBC patients are not well understood. METHODS: Qualitative interviews were conducted to describe the experiences of financial burden for MBC patients, focusing on the drivers of financial burden, their experience using their health insurance, accessing financial assistance, and any resulting cost-coping behaviors. Interviews were transcribed and qualitatively analyzed using a descriptive phenomenological approach to thematic analysis. RESULTS: A total of n = 11 MBC patients or caregiver representatives participated in the study. MBC patients were on average 50.2 years of age (range: 28-65) and 72.7% non-Hispanic White. MBC patients were diagnosed as metastatic an average of 3.1 years (range: 1-9) before participating in the study. Qualitative analysis resulted in four themes including (1) causes of financial burden, (2) financial assistance mechanisms, (3) health insurance and financial burden, and (4) cost-coping behaviors. Both medical and non-medical costs drove financial burden among participants. All participants reported challenges navigating their health insurance and applying for financial assistance. Regardless of gaining access to assistance, financial burden persisted for nearly all patients and resulted in cost-coping behaviors. CONCLUSION: Our findings suggest that current systems for health insurance and financial assistance are complex and difficult to meet patient needs. Even when MBC patients accessed assistance, excess financial burden persisted necessitating use of financial coping-behaviors such as altering medication use, maintaining employment, and taking on debt.
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Adaptação Psicológica , Neoplasias da Mama , Efeitos Psicossociais da Doença , Seguro Saúde , Pesquisa Qualitativa , Humanos , Feminino , Pessoa de Meia-Idade , Adulto , Neoplasias da Mama/economia , Neoplasias da Mama/psicologia , Neoplasias da Mama/terapia , Neoplasias da Mama/patologia , Seguro Saúde/economia , Idoso , Metástase Neoplásica , Capacidades de EnfrentamentoRESUMO
The National Comprehensive Cancer Control Program, a Centers for Disease Control and Prevention funded program, supports cancer coalitions across the United States (US) in efforts to prevent and control cancer including development of comprehensive cancer control (CCC) plans. CCC plans often focus health equity within their priorities, but it is unclear to what extent lesbian, gay, bisexual, transgender, queer/questioning, plus (LGBTQ+) populations are considered in CCC plans. We qualitatively examined to what extent LGBTQ+ populations were referenced in 64 U.S. state, jurisdiction, tribes, and tribal organization CCC plans. A total of 55% of CCC plans mentioned LGBTQ+ populations, however, only one in three CCC plans mentioned any kind of LGBTQ+ inequity or LGBTQ+ specific recommendations. Even fewer plans included mention of LGBTQ+ specific resources, organizations, or citations. At the same time almost three fourths of plans conflated sex and gender throughout their CCC plans. The findings of this study highlight the lack of prioritization of LGBTQ+ populations in CCC plans broadly while highlighting exemplar plans that can serve as a roadmap to more inclusive future CCC plans. Comprehensive cancer control plans can serve as a key policy and advocacy structure to promote a focus on LGBTQ+ cancer prevention and control.
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OBJECTIVE: Models simulating the potential impacts of Human Papillomavirus (HPV) vaccine have been used globally to guide vaccination policies and programs. We sought to understand how and why marginalized populations have been incorporated into HPV vaccine simulation models. METHODS: We conducted a systematic search of PubMed, CINAHL, Scopus, and Embase to identify studies using simulation models of HPV vaccination incorporating one or more marginalized population through stratification or subgroup analysis. We extracted data on study characteristics and described these overall and by included marginalized groups. RESULTS: We identified 36 studies that met inclusion criteria, which modeled vaccination in 21 countries. Models included men who have sex with men (MSM; k = 16), stratification by HIV status (k = 9), race/ethnicity (k = 6), poverty (k = 5), rurality (k = 4), and female sex workers (k = 1). When evaluating for a marginalized group (k = 10), HPV vaccination was generally found to be cost-effective, including for MSM, individuals living with HIV, and rural populations. In studies evaluating equity in cancer prevention (k = 9), HPV vaccination generally advanced equity, but this was sensitive to differences in HPV vaccine uptake and use of absolute or relative measures of inequities. Only one study assessed the impact of an intervention promoting HPV vaccine uptake. DISCUSSION: Incorporating marginalized populations into decision models can provide valuable insights to guide decision making and improve equity in cancer prevention. More research is needed to understand the equity impact of HPV vaccination on cancer outcomes among marginalized groups. Research should emphasize implementation - including identifying and evaluating specific interventions to increase HPV vaccine uptake.
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BACKGROUND: Treatment choices in hepatocellular carcinoma (HCC) involve consideration of tradeoffs between the benefits, toxicities, inconvenience, and costs. Stated preference elicitation methods have been used in the medical field to help evaluate complex treatment decision-making. The aim of this study was to conduct a scoping review to assess the evidence base for the use of preference elicitation tools or willingness to pay/willingness to accept methods for HCC treatment decision-making from both the patient and provider perspective. METHODS: We performed a scoping review to identify abstracts or manuscripts focused on the role preference elicitation tools or willingness to pay/willingness to accept methods for HCC treatment options among patients, caregivers, and/or providers. Two researchers independently screened full-text references and resolved conflicts through discussion. We summarized key findings, including the type and setting of preference-elicitation tools used for HCC treatment decisions. RESULTS: Ten published abstracts or manuscripts evaluated the role of preference elicitation tools for HCC treatments. The studies revealed several attributes that are considered by patients and providers making HCC treatment decisions. Many of the studies reviewed suggested that while patients place the most value on extending their overall survival, they are willing to forgo overall survival to avoid risks of treatments and maintain quality of life. Studies of physicians and surgeons found that provider preferences are dependent on patient characteristics, provider specialty, and surgeon or hospital-related factors. CONCLUSION: This scoping review explored both patient and physician preferences towards treatment modalities in all stages of HCC. The studies revealed a large scope of potential attributes that may be important to patients and that many patients are willing to forgo survival to maintain quality of life. Further research should explore both preference elicitation of currently available and emerging therapies for HCC as well as the use of this data to develop patient-facing tools to assist in navigating treatment options.
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Carcinoma Hepatocelular , Neoplasias Hepáticas , Preferência do Paciente , Carcinoma Hepatocelular/terapia , Humanos , Neoplasias Hepáticas/terapia , Qualidade de Vida , Tomada de Decisão Clínica , Tomada de DecisõesRESUMO
BACKGROUND: Hepatocellular carcinoma (HCC) surveillance in patients with cirrhosis is associated with improved survival. Provision of HCC surveillance is low in the US, particularly in primary care settings. AIMS: To evaluate current hepatitis C virus (HCV) and HCC surveillance practices and physician attitudes regarding HCC risk-stratification among primary care and subspecialty providers. METHODS: Using the Tailored Design Method, we delivered a 34-item online survey to 7654 North Carolina-licensed internal/family medicine or gastroenterology/hepatology physicians and advanced practice providers in 2022. We included the domains of HCV treatment, cirrhosis diagnosis, HCC surveillance practices, barriers to surveillance, and interest in risk-stratification tools. We performed descriptive analyses to summarize responses. Tabulations were weighted based on sampling weights accounting for non-response and inter-specialty comparisons were made using chi-squared or t test statistics. RESULTS: After exclusions, 266 responses were included in the final sample (response rate 3.8%). Most respondents (78%) diagnosed cirrhosis using imaging and a minority used non-invasive tests that were blood-based (~ 15%) or transient elastography (31%). Compared to primary care providers, subspecialists were more likely to perform HCC surveillance every 6-months (vs annual) (98% vs 35%, p < 0.0001). Most respondents (80%) believed there were strong data to support HCC surveillance, but primary care providers did not know which liver disease patients needed surveillance. Most providers (> 70%) expressed interest in potential solutions to improve HCC risk-stratification. CONCLUSIONS: In this statewide survey, there were great knowledge gaps in HCC surveillance among PCPs and most respondents expressed interest in strategies to increase appropriate HCC surveillance.
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Carcinoma Hepatocelular , Neoplasias Hepáticas , Padrões de Prática Médica , Atenção Primária à Saúde , Humanos , Carcinoma Hepatocelular/epidemiologia , Carcinoma Hepatocelular/diagnóstico , Carcinoma Hepatocelular/terapia , Neoplasias Hepáticas/epidemiologia , Neoplasias Hepáticas/diagnóstico , Neoplasias Hepáticas/terapia , Atenção Primária à Saúde/estatística & dados numéricos , Medição de Risco , Padrões de Prática Médica/estatística & dados numéricos , North Carolina/epidemiologia , Masculino , Feminino , Cirrose Hepática/epidemiologia , Cirrose Hepática/diagnóstico , Gastroenterologia/estatística & dados numéricos , Atitude do Pessoal de Saúde , Inquéritos e Questionários , Detecção Precoce de Câncer/métodos , Detecção Precoce de Câncer/estatística & dados numéricos , Pesquisas sobre Atenção à SaúdeRESUMO
We sought to examine cervical cancer screening barriers by sexual orientation among low-income women in North Carolina. The MyBodyMyTest-3 Trial recruited low-income women (< 250% of federal poverty level) aged 25-64 years who were 1+ year overdue for cervical cancer screening. We compared perceptions of cervical cancer screening among those who self-identified as lesbian, gay, bisexual, or queer (LGBQ; n = 70) to straight/heterosexual women (n = 683). For both LGBQ and straight respondents, the greatest barriers to screening were lack of health insurance (63% and 66%) and cost (49% and 50%). LGBQ respondents were more likely than straight respondents to report forgetting to screen (16% vs. 8%, p = .05), transportation barriers (10% vs. 2%, p = .001), and competing mental or physical health problems (39% vs. 27%, p = .10). Addressing access remains important for improving cervical cancer screening among those under-screened. For LGBQ women, additional attention may be needed for reminders, co-occurring health needs, and transportation barriers.
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Detecção Precoce de Câncer , Acessibilidade aos Serviços de Saúde , Pobreza , Neoplasias do Colo do Útero , Humanos , Feminino , Neoplasias do Colo do Útero/diagnóstico , North Carolina , Pessoa de Meia-Idade , Adulto , Detecção Precoce de Câncer/estatística & dados numéricos , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Comportamento Sexual , Minorias Sexuais e de Gênero/estatística & dados numéricos , Minorias Sexuais e de Gênero/psicologia , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Programas de Rastreamento/estatística & dados numéricosRESUMO
BACKGROUND: Telehealth (telemedicine and telepharmacy) services increase access to patient services and ensure continuity of care. However, few studies have assessed factors that influence patients' willingness to use telehealth services, and we sought to investigate this. OBJECTIVE: This study aims to examine respondents' (aged between 45 and 75 years) willingness to use telehealth services (telepharmacy and telemedicine) and the correlates of the willingness to use telehealth services. METHODS: We administered a cross-sectional national survey of 1045 noninstitutionalized US adults aged between 45 and 75 years in March and April 2021. Multiple logistic regression analyses were used to identify demographic and health service use correlates of self-reported willingness to use telehealth services. RESULTS: Overall willingness to use telemedicine was high (674/1045, 64.5%). Adults aged 55 years and older were less willing to use telemedicine (aged between 55 and 64 years: odds ratio [OR] 0.61, 95% CI 0.42-0.86; aged 65 years or older: OR 0.33, 95% CI 0.22-0.49) than those younger than 55 years. Those with a regular provider (OR 1.01, 95% CI 1-1.02) and long travel times (OR 1.75, 95% CI 1.03-2.98) were more willing to use telemedicine compared to those without a regular provider and had shorter travel times, respectively. Willingness to use telemedicine services increased from 64.5% (674/1045) to 83% (867/1045) if the service was low-cost or insurance-covered, was with their existing health care provider, or was easy-to-use. Overall willingness to use telepharmacy was 76.7% (801/1045). Adults aged older than 55 years were less willing to use telepharmacy (aged between 55 and 64 years: OR 0.57, 95% CI 0.38-0.86; aged 65 years or older: OR 0.24, 95% CI 0.15-0.37) than those younger than 55 years. Those who rated pharmacy service quality higher were more willing to use telepharmacy (OR 1.06, 95% CI 1.03-1.09) than those who did not. CONCLUSIONS: Respondents were generally willing to use telehealth (telemedicine and telepharmacy) services, but the likelihood of their being willing to use telehealth decreased as they were older. For those initially unwilling (aged 55 years or older) to use telemedicine services, inexpensive or insurance-covered services were acceptable.
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Telemedicina , Humanos , Telemedicina/estatística & dados numéricos , Estudos Transversais , Pessoa de Meia-Idade , Idoso , Masculino , Feminino , Estados Unidos , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Colorectal cancer (CRC) screening can reduce CRC morbidity and mortality. Community pharmacies could be a viable option for delivering home-based CRC screening tests such as fecal immunochemical tests (FITs). However, little is known about community pharmacists' knowledge about CRC screening guidelines. OBJECTIVE: We assessed community pharmacists' knowledge about CRC screening to identify education and training needs for a pharmacy-based CRC screening program. METHODS: Between September 2022 and January 2023, we conducted an online national survey of community pharmacists practicing in the United States. Responders were eligible if they were currently-licensed community pharmacists and currently practiced in the United States. The survey assessed knowledge of national CRC screening guidelines, including recommended starting age, frequency of screening, different screening modalities, and follow-up care. Using multiple linear regression, we evaluated correlates of community pharmacists' level of CRC screening knowledge, defined as the total number of knowledge questions answered correctly from "0" (no questions correct) to "5" (all questions correct). RESULTS: A total of 578 eligible community pharmacists completed the survey, with a response rate of 59%. Most community pharmacists correctly answered the question about the next steps following a positive FIT (87%) and the question about where a FIT can be done (84%). A minority of community pharmacists responded correctly to questions about the age to start screening with FIT (34%) and how often a FIT should be repeated (28%). Only 5% of pharmacists answered all knowledge questions correctly. Community pharmacists answered more CRC screening knowledge questions correctly as their years in practice increased. Board-certified community pharmacists answered more CRC screening knowledge questions correctly compared to those who were not board-certified. CONCLUSION: To ensure the successful implementation of a pharmacy-based CRC screening program, community pharmacists need to be educated about CRC screening and trained to ensure comprehensive patient counseling and preventive service delivery.
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CONTEXT: Most incident cases of cervical cancer in the United States are attributable to inadequate screening. Federally qualified health centers (FQHCs) serve a large proportion of women who are low-income, have no insurance, and are underserved-risk factors for insufficient cervical cancer screening. FQHCs must maintain quality measures to preserve their accreditation, address financial reimbursements, and provide quality care. Implementation of human papillomavirus (HPV) self-collection can improve cervical cancer screening coverage within FQHCs. OBJECTIVES: To understand perspectives from clinical personnel on current cervical cancer screening rates at FQHCs in North Carolina and the impact of implementing HPV self-collection among underscreened patients on screening rates and performance measures. DESIGN: The study used focus groups and key informant interviews. Coding-based thematic analysis was applied to both focus group and interview transcripts. Emergent themes regarding perspectives on self-collection implementation were mapped onto Consolidated Framework for Implementation Research (CFIR) constructs to identify future barriers and facilitators to implementation. SETTING: Two FQHCs in North Carolina and a cloud-based videoconferencing platform. PARTICIPANTS: Six FQHCs in North Carolina; 45 clinical and administrative staff from the 6 FQHCs; 1 chief executive officer (n = 6), 1 senior-level administrator (n = 6), 1 chief medical officer (n = 6), and 1 clinical data manager (n = 6) from each FQHC. MAIN OUTCOME MEASURE: Achievement of clinical perspectives. RESULTS: Societal-, practice-, and patient-level factors currently contribute to subpar cervical cancer screening rates. HPV self-collection was expected to improve screening uptake among underscreened women at FQHCs, and thus quality and performance measures, by offering an alternative screening approach for in-clinic or at-home use. Implementation barriers include financial uncertainties and HPV self-collection not yet a Food and Drug Administration-approved test. CONCLUSION: HPV self-collection has potential to improve cervical cancer screening quality and performance measures of FQHCs. For a successful implementation, multilevel factors that are currently affecting low screening uptake need to be addressed. Furthermore, the financial implications of implementation and approval of HPV self-collection as a test for cervical cancer screening quality measures need to be resolved.
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Detecção Precoce de Câncer , Grupos Focais , Infecções por Papillomavirus , Melhoria de Qualidade , Neoplasias do Colo do Útero , Humanos , Feminino , North Carolina , Detecção Precoce de Câncer/métodos , Neoplasias do Colo do Útero/diagnóstico , Neoplasias do Colo do Útero/prevenção & controle , Infecções por Papillomavirus/diagnóstico , Adulto , Programas de Rastreamento/métodos , Programas de Rastreamento/normas , Pessoa de Meia-Idade , Manejo de Espécimes/métodos , Pesquisa Qualitativa , Papillomaviridae/isolamento & purificação , Papillomaviridae/patogenicidadeRESUMO
PURPOSE: Cancer health disparities result from complex interactions among socioeconomic, behavioral, and biological factors, disproportionately affecting marginalized racial and ethnic groups. The objective of this review is to synthesize existing evidence on interventions addressing racial or ethnic disparities in cancer-related health care access and clinical outcomes. METHODS: A comprehensive search of Cochrane Library, Google Scholar, Ovid MEDLINE, Ovid Embase, PubMed, Scopus, and Web of Science Core Collection was conducted from database inception to February 23, 2023. Controlled vocabulary and keywords helped to identify studies on cancer-related disparities and interventions in adults age 18 years or older. Two reviewers followed the Preferred Reporting Items for Systematic Reviews and Meta-Analysis reporting guidelines. Study quality was assessed using the Joanna Briggs Institute Critical Appraisal Tool. RESULTS: Of 7,526 screened studies, 34 met the inclusion criteria involving 24,134 participants. Most studies focused on breast cancer (n = 17) and Hispanic/Latino populations (n = 10) and enrolled participants primarily from community-based sites (n = 19). Twenty-one studies examined patient-centered outcomes, such as health-related quality of life and psychological well-being, while 15 studies assessed process-of-care outcomes, such as timeliness of care. Most studies followed a community-based participatory research framework. Five patient-centered outcome studies reported a positive intervention effect, often combining cancer education with psychological well-being interventions. Among the 15 process-of-care outcome studies, nine reported positive effects, with the majority (n = 8) being navigation-based interventions. CONCLUSION: This systematic review emphasizes the vital role of community partnerships in addressing racial and ethnic disparities in oncology care and highlights the need for standardized approaches in intervention research because of the heterogeneity of studied interventions. Furthermore, the prevailing emphasis on breast cancer and Hispanic populations indicates the need for future investigations into other priority demographic groups.
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Disparidades em Assistência à Saúde , Neoplasias , Humanos , Disparidades em Assistência à Saúde/etnologia , Neoplasias/terapia , Neoplasias/etnologia , Acessibilidade aos Serviços de Saúde , EtnicidadeRESUMO
OBJECTIVE: To examine Medicaid-insurance acceptance at facilities treating urologic cancers following implementation of the Affordable Care Act (ACA). METHODS: We conducted a retrospective, longitudinal study with a pre-post design. We accessed 2010-2017 data from the National Cancer Database, calculating the facility-level change in proportion of urologic cancer patients with Medicaid following implementation of the ACA. We used multivariable logistic regression to assess baseline clinical and demographic factors associated with changes in the proportion of patients at a facility insured through Medicaid. RESULTS: We identified 630 facilities, including 287 in Medicaid expansion states and 343 in non-expansion states associated with 436,082 urologic cancer patients. The mean facility-level change in proportion of patients with Medicaid was + 5.8% (95% CI 5.0%-6.5%) in expansion states versus + 0.6% (95% CI 0.2%-0.9%) in non-expansion states. There were 179 facilities that experienced a decrease in the post-ACA period, representing 13.6% of facilities in expansion states and 40.8% in non-expansion states (P <.001). Factors associated with a decrease in proportion of urologic cancer patients insured by Medicaid included non-expansion state status (OR 8.9, 95% CI 5.3-15.6, P <.001), higher baseline proportion of patients with Medicaid (highest quartile vs lowest: OR 4.6, 95% CI 2.3-9.4, P <.001) and high-income zip code (highest vs lowest quartile: OR 3.1, 95% CI 1.5-6.6, P <.001). CONCLUSION: Urologic cancer care for Medicaid-insured Americans remains unevenly distributed across cancer care centers, even in states that expanded coverage. Our findings suggest that this variation may reflect the effort of some facilities to reduce their financial exposure to increased numbers of Medicaid patients in the wake of ACA-supported state expansions.
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PURPOSE: Driven by anti-LGBTQ+ stigma, emerging literature suggests that lesbian, gay, and bisexual (LGB) cancer survivors experience financial hardship (FH) more frequently than heterosexual survivors. However, few studies have used nationally representative samples to estimate this inequity. METHODS: National Health Interview Survey data from 2019 to 2022 were pooled and weighted. Outcomes included material, psychological, and behavioral FH. The behavioral domain was further broken down into subdomains including medical care, prescription medications, and mental health care. Multivariable logit models controlling for a variety of factors were used to generate LGB and heterosexual predicted probabilities and differential effects for each FH outcome. Stratified estimates were generated by sex and age groups. RESULTS: A total of N = 374 LGB and N = 12,757 heterosexual cancer survivors were included in this analysis. In adjusted analyses, LGB cancer survivors had significantly higher material (19%, 95% CI, 15 to 24 v 12%, 95% CI, 11 to 13; P = .004), psychological (44%, 95% CI, 38 to 51 v 37%, 95% CI, 36 to 38; P = .035), and behavioral (23%, 95% CI, 18 to 28 v 13%, 95% CI, 13 to 14; P < .0001) FH than heterosexual survivors. LGB cancer survivors also had higher medical behavioral (11%, 95% CI, 7 to 15 v 7%, 95% CI, 6 to 7; P = .030), prescription medication behavioral (14%, 95% CI, 10 to 19 v 10%, 95% CI, 9 to 10; P = .032), and mental health behavioral (9%, 95% CI, 6 to 13 v 3%, 95% CI, 3 to 4; P < .0001) FH than heterosexual survivors. Stratified estimates revealed young LGB cancer survivors had the highest probability of each outcome (material: 31%, 95% CI, 23 to 40; psychological: 58%, 95% CI, 50 to 66; behavioral: 45%, 95% CI, 36 to 53). CONCLUSION: In this nationally representative analysis, LGB cancer survivors experience substantial inequities in all FH outcomes. It is crucial that future FH interventional work should prioritize populations at the highest risk of FH, such as LGB cancer survivors.
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BACKGROUND: The majority of patients with cancer seek care at community oncology sites; however, most clinical trials are available at National Cancer Institute (NCI)-designated sites. Although the NCI National Cancer Oncology Research Program (NCORP) was designed to address this problem, little is known about the county-level characteristics of NCORP site locations. METHODS: This cross-sectional analysis determined the association between availability of NCORP or NCI sites and county-level characteristic theme percentile scores from the Center for Disease Control and Prevention's Social Vulnerability Index themes. Health Resources and Services Administration's Area Health Resource Files were used to determine contiguous counties. We estimated risk ratios and 95% confidence intervals (CIs) using modified Poisson regression models to evaluate the association between county-level characteristics and site availability within singular and singular and contiguous counties. RESULTS: Of 3141 included counties, 14% had an NCORP, 2% had an NCI, and 1% had both sites. Among singular counties, for a standard deviation increase in the racial and ethnic theme score, there was a 22% higher likelihood of NCORP site availability (95% CI = 1.10 to 1.36); for a standard deviation increase in the socioeconomic status theme score, there was a 24% lower likelihood of NCORP site availability (95% CI = 0.67 to 0.87). Associations were of smaller magnitude when including contiguous counties. NCI sites were located in more vulnerable counties. CONCLUSIONS: NCORP sites were more often in racially diverse counties and less often in socioeconomically vulnerable counties. Research is needed to understand how clinical trial representation will increase if NCORP sites strategically increase their locations in more vulnerable counties.
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National Cancer Institute (U.S.) , Neoplasias , Humanos , Estados Unidos , Estudos Transversais , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Ensaios Clínicos como Assunto/estatística & dados numéricos , Grupos Raciais/estatística & dados numéricos , Populações Vulneráveis/estatística & dados numéricos , Institutos de Câncer/estatística & dados numéricos , Institutos de Câncer/provisão & distribuição , Oncologia , Etnicidade/estatística & dados numéricos , Fatores SocioeconômicosRESUMO
OBJECTIVES: We sought to understand why some women with early-stage breast cancer decide to forgo or discontinue endocrine therapy (ET), and to identify factors that might lead to greater acceptance of, and long-term adherence to, this treatment. METHODS: We conducted in-depth interviews with N = 53 stage I-III HR+ women who were either non-initiators of ET, initiators who discontinued or initiators who continued with variable daily patterns of adherence. An inductive content analysis was performed to explore the decision-making process of women prescribed ET. RESULTS: Qualitative analyses revealed 55 themes that drove complex decision making. The initiators generally trusted their physicians and did little research before starting the medication. Non-initiators were more suspicious of the medical system, believing that ET presented more risks than benefits. Most discontinuers stopped ET because of side effects. Both non-initiators and discontinuers indicated that push-back from their physicians could have changed their decision. Stories and social support were important in decision making. CONCLUSIONS: Although ET can significantly reduce the risk of breast cancer recurrence, substantial barriers prevent many women from initiating or continuing it. PRACTICE IMPLICATIONS: Physicians have powerful influence over patients' decisions to initiate ET and can be important levers for motivating patients to persist.
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Antineoplásicos Hormonais , Neoplasias da Mama , Tomada de Decisões , Entrevistas como Assunto , Relações Médico-Paciente , Pesquisa Qualitativa , Humanos , Feminino , Neoplasias da Mama/tratamento farmacológico , Neoplasias da Mama/psicologia , Pessoa de Meia-Idade , Antineoplásicos Hormonais/uso terapêutico , Adulto , Idoso , Adesão à Medicação/psicologia , Apoio Social , Administração OralRESUMO
HPV vaccination coverage remains far below the national target of 80% among US adolescents, particularly in rural areas, which have vaccine uptake rates that are 10% points lower than non-rural areas on average. Primary care professionals (PCPs) can increase coverage by using presumptive recommendations to introduce HPV vaccination in a way that assumes parents want to vaccinate. Through semi-structured interviews, we explored PCPs' experiences and perceptions of using presumptive recommendations in rural- and non-rural-serving primary care clinics in North Carolina. Thematic analysis revealed that most PCPs in rural and non-rural contexts used presumptive recommendations and felt the strategy was an effective and concise way to introduce the topic of HPV vaccination to parents. At the same time, some PCPs raised concerns about presumptive recommendations potentially straining relationships with certain parents, including those who had previously declined HPV vaccine or who distrust medical authority due to their past experiences with the healthcare system. PCPs dealt with these challenges by using a more open-ended approach when introducing HPV vaccination to parents. In conclusion, our findings suggest that PCPs in both rural and non-rural settings see value in using presumptive recommendations to introduce HPV vaccination, but to adequately address concerns and ensure increased HPV vaccine uptake, PCPs can use simple and culturally sensitive language to ensure fully informed consent and to maintain parental trust. And to further strengthen HPV vaccine discussions, PCPs can utilize other effective HPV communication techniques, like the Announcement Approach, in discussing HPV vaccinations with hesitant parents.
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Infecções por Papillomavirus , Vacinas contra Papillomavirus , Pais , Atenção Primária à Saúde , Pesquisa Qualitativa , População Rural , Vacinação , Humanos , Vacinas contra Papillomavirus/administração & dosagem , Feminino , Infecções por Papillomavirus/prevenção & controle , Masculino , Vacinação/estatística & dados numéricos , Vacinação/psicologia , Adolescente , Pais/psicologia , North Carolina , Adulto , Atitude do Pessoal de Saúde , Pessoa de Meia-Idade , Cobertura Vacinal/estatística & dados numéricos , Conhecimentos, Atitudes e Prática em Saúde , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Pessoal de Saúde/psicologia , Entrevistas como AssuntoRESUMO
BACKGROUND: Population-based linked datasets are vital to generate catchment area and population health research. The novel Cancer Information & Population Health Resource (CIPHR) links statewide cancer registry data, public and private insurance claims, and provider- and area-level data, representing more than 80% of North Carolina's large, diverse population of individuals diagnosed with cancer. This scoping review of articles that used CIPHR data characterizes the breadth of research generated and identifies further opportunities for population-based health research. METHODS: Articles published January 2012 - August 2023 were categorized by cancer site and outcomes examined across the care continuum. Statistically significant associations between patient-, provider-, and system/policy-level factors and outcomes were summarized. RESULTS: Among 51 articles, 42 reported results across 23 unique cancer sites and 13 aggregated across multiple sites. The most common outcomes examined were treatment initiation and/or adherence (n = 14), mortality/survival (n = 9), and health care resource utilization (n = 9). Few articles focused on cancer recurrence (n = 1) or distance to care (n = 1) as outcomes. Many articles discussed racial, ethnic, geographic, and socioeconomic inequities in care. CONCLUSIONS: These findings demonstrate the value of robust, longitudinal, linked, population-based databases to facilitate catchment area and population health research aimed at elucidating cancer risk factors, outcomes, care delivery trends, and inequities that warrant intervention and policy attention. Lessons learned from years of analytics using CIPHR highlight opportunities to explore less-frequently studied cancers and outcomes, motivate equity-focused interventions, and inform development of similar resources.
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PURPOSE: Structural racism (SR) is a potential driver of health disparities, but research quantifying its impacts on cancer outcomes has been limited. We aimed to develop a multidimensional county-level SR measure and to examine the association of SR with breast cancer (BC) treatment delays among Black and White patients. METHODS: The cohort included 32,095 individuals from the North Carolina Central Cancer Registry with stage I to III BC diagnosed between 2004 and 2017 and linked to multipayer insurance claims from the Cancer Information and Population Health Resource. County-level data were drawn from multiple public sources aggregated in the Robert Wood Johnson County Health Rankings database. Racial gaps in eight social determinants across five domains were quantified at the county level and ranked on a 0-100 minimum-maximum scale. Domain scores were averaged to create a SR Composite Index (SRCI) score. We used multilevel logistic regression with random intercepts and multiple cross-level interaction terms to evaluate the association between county-level SRCI and patient-level treatment delays, adjusting for patient-level characteristics and stratified by race. RESULTS: The SRCI score ranged from 21 to 75 with a median (IQR) of 39.0 (31.8, 45.7). For Black patients, a 10-unit increase in SRCI score was associated with increased odds of delay (Adjusted odds ratios [aOR], 1.25; 95% confidence limits [CL], 1.08 to 1.45). No such association was found for White patients (OR, 1.05; 95% CL, 0.97 to 1.15). CONCLUSION: Area-level SR measured by a composite index is associated with higher odds of BC treatment delays among Black, but not White patients. Increasing county-level SR is associated with increasing Black-White disparities in treatment delay. Further research is needed to refine the measurement of SR and to examine its association with other cancer care disparities.
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Importance: Area-level measures of sociodemographic disadvantage may be associated with racial and ethnic disparities with respect to receipt of treatment for metastatic renal cell carcinoma (mRCC) but have not been investigated previously, to our knowledge. Objective: To assess the association between area-level measures of social vulnerability and racial and ethnic disparities in the treatment of US Medicare beneficiaries with mRCC from 2015 through 2019. Design, Setting, and Participants: This retrospective cohort study included Medicare beneficiaries older than 65 years who were diagnosed with mRCC from January 2015 through December 2019 and were enrolled in fee-for-service Medicare Parts A, B, and D from 1 year before through 1 year after presumed diagnosis or until death. Data were analyzed from November 22, 2022, through January 26, 2024. Exposures: Five different county-level measures of disadvantage and 4 zip code-level measures of vulnerability or deprivation and segregation were used to dichotomize whether an individual resided in the most vulnerable quartile according to each metric. Patient-level factors included age, race and ethnicity, sex, diagnosis year, comorbidities, frailty, Medicare and Medicaid dual enrollment eligibility, and Medicare Part D low-income subsidy (LIS). Main Outcomes and Measures: The main outcomes were receipt and type of systemic therapy (oral anticancer agent or immunotherapy from 2 months before to 1 year after diagnosis of mRCC) as a function of patient and area-level characteristics. Multivariable regression analyses were used to adjust for patient factors, and odds ratios (ORs) from logistic regression and relative risk ratios (RRRs) from multinomial logistic regression are reported. Results: The sample included 15â¯407 patients (mean [SD] age, 75.6 [6.8] years), of whom 9360 (60.8%) were men; 6931 (45.0%), older than 75 years; 93 (0.6%), American Indian or Alaska Native; 257 (1.7%), Asian or Pacific Islander; 757 (4.9%), Hispanic; 1017 (6.6%), non-Hispanic Black; 12â¯966 (84.2%), non-Hispanic White; 121 (0.8%), other; and 196 (1.3%), unknown. Overall, 8317 patients (54.0%) received some type of systemic therapy. After adjusting for individual factors, no county or zip code-level measures of social vulnerability, deprivation, or segregation were associated with disparities in treatment. In contrast, patient-level factors, including female sex (OR, 0.78; 95% CI, 0.73-0.84) and LIS (OR, 0.48; 95% CI, 0.36-0.65), were associated with lack of treatment, with particularly limited access to immunotherapy for patients with LIS (RRR, 0.25; 95% CI, 0.14-0.43). Associations between individual-level factors and treatment in multivariable analysis were not mediated by the addition of area-level metrics. Disparities by race and ethnicity were consistently and only observed within the most vulnerable areas, as indicated by the top quartile of each vulnerability deprivation index. Conclusions and Relevance: In this cohort study of older Medicare patients diagnosed with mRCC, individual-level demographics, including race and ethnicity, sex, and income, were associated with receipt of systemic therapy, whereas area-level measures were not. However, individual-level racial and ethnic disparities were largely limited to socially vulnerable areas, suggesting that efforts to improve racial and ethnic disparities may be most effective when targeted to socially vulnerable areas.