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BACKGROUND: Evidence-based practices for reducing opioid-related overdose deaths include overdose education and naloxone distribution, the use of medications for the treatment of opioid use disorder, and prescription opioid safety. Data are needed on the effectiveness of a community-engaged intervention to reduce opioid-related overdose deaths through enhanced uptake of these practices. METHODS: In this community-level, cluster-randomized trial, we randomly assigned 67 communities in Kentucky, Massachusetts, New York, and Ohio to receive the intervention (34 communities) or a wait-list control (33 communities), stratified according to state. The trial was conducted within the context of both the coronavirus disease 2019 (Covid-19) pandemic and a national surge in the number of fentanyl-related overdose deaths. The trial groups were balanced within states according to urban or rural classification, previous overdose rate, and community population. The primary outcome was the number of opioid-related overdose deaths among community adults. RESULTS: During the comparison period from July 2021 through June 2022, the population-averaged rates of opioid-related overdose deaths were similar in the intervention group and the control group (47.2 deaths per 100,000 population vs. 51.7 per 100,000 population), for an adjusted rate ratio of 0.91 (95% confidence interval, 0.76 to 1.09; P = 0.30). The effect of the intervention on the rate of opioid-related overdose deaths did not differ appreciably according to state, urban or rural category, age, sex, or race or ethnic group. Intervention communities implemented 615 evidence-based practice strategies from the 806 strategies selected by communities (254 involving overdose education and naloxone distribution, 256 involving the use of medications for opioid use disorder, and 105 involving prescription opioid safety). Of these evidence-based practice strategies, only 235 (38%) had been initiated by the start of the comparison year. CONCLUSIONS: In this 12-month multimodal intervention trial involving community coalitions in the deployment of evidence-based practices to reduce opioid overdose deaths, death rates were similar in the intervention group and the control group in the context of the Covid-19 pandemic and the fentanyl-related overdose epidemic. (Funded by the National Institutes of Health; HCS ClinicalTrials.gov number, NCT04111939.).
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PURPOSE: Unmet social needs pose barriers to cancer care, contributing to adverse outcomes and health inequities. A better understanding of how social needs change after cancer diagnosis can inform more effective, equity-focused interventions. METHODS: In this study, we examined self-reported social needs at 0, 3, and 6 months after a breast cancer diagnosis in a racially diverse, multilingual sample (n = 222) enrolled in patient navigation intervention at an urban safety-net hospital. At each timepoint, respondents completed surveys about social needs related to employment, disability benefits, housing and utilities, and personal and family stability. RESULTS: Over three-quarters (78%, n = 175) reported ≥ 1 social need, and 46% (n = 102) reported ≥ 3 social needs. The most frequently reported need was housing and utilities (64%, n = 142), followed by employment (40%, n = 90). Individuals from minoritized groups more frequently reported an increased number of social needs over time, compared with their White counterparts (p = 0.02). CONCLUSION: Our findings suggest that despite navigation, many cancer patients from historically underrepresented populations continue to experience social concerns over the first 6 months of treatment. Further research, conducted with historically underrepresented populations in research, is needed to better understand the social needs of breast cancer patients to inform effective and equitable interventions.
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OBJECTIVE: To understand how Long COVID is impacting the health and social conditions of the Black and Latinx communities. BACKGROUND: Emerging research on Long COVID has identified three distinct characteristics, including multi-organ damage, persistent symptoms, and post-hospitalization complications. Given Black and Latinx communities experienced significantly higher COVID rates in the first phase of the pandemic they may be disproportionately impacted by Long COVID. METHODS: Eleven focus groups were conducted in four languages with diverse Black and Latinx individuals (n = 99) experiencing prolonged symptoms of COVID-19 or caring for family members with prolonged COVID-19 symptoms. Data was analyzed thematically. RESULTS: Most participants in non-English language groups reported they were unfamiliar with the diagnosis of long COVID, despite experiencing symptoms. Long COVID impacts spanned financial and housing stability to physical and mental health impacts. Participants reported challenging encounters with health care providers, a lack of support managing symptoms and difficulty performing activities of daily living including work. CONCLUSIONS: There is a need for multilingual, accessible information about Long COVID symptoms, improved outreach and healthcare delivery, and increased ease of enrollment in long-term disability and economic support programs.
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Negro ou Afro-Americano , COVID-19 , Grupos Focais , Hispânico ou Latino , Humanos , Hispânico ou Latino/psicologia , Hispânico ou Latino/estatística & dados numéricos , COVID-19/etnologia , COVID-19/psicologia , COVID-19/epidemiologia , Masculino , Feminino , Pessoa de Meia-Idade , Massachusetts , Adulto , Negro ou Afro-Americano/psicologia , Negro ou Afro-Americano/estatística & dados numéricos , Síndrome de COVID-19 Pós-Aguda , Idoso , SARS-CoV-2RESUMO
BACKGROUND: Social needs inhibit receipt of timely medical care. Social needs screening is a vital part of comprehensive cancer care, and patient navigators are well-positioned to screen for and address social needs. This mixed methods project describes social needs screening implementation in a prospective pragmatic patient navigation intervention trial for minoritized women newly diagnosed with breast cancer. METHODS: Translating Research Into Practice (TRIP) was conducted at five cancer care sites in Boston, MA from 2018 to 2022. The patient navigation intervention protocol included completion of a social needs screening survey covering 9 domains (e.g., food, transportation) within 90 days of intake. We estimated the proportion of patients who received a social needs screening within 90 days of navigation intake. A multivariable log binomial regression model estimated the adjusted rate ratios (aRR) and 95% confidence intervals (CI) of patient socio-demographic characteristics and screening delivery. Key informant interviews with navigators (n = 8) and patients (n = 21) assessed screening acceptability and factors that facilitate and impede implementation. Using a convergent, parallel mixed methods approach, findings from each data source were integrated to interpret study results. RESULTS: Patients' (n = 588) mean age was 59 (SD = 13); 45% were non-Hispanic Black and 27% were Hispanic. Sixty-nine percent of patients in the navigators' caseloads received social needs screening. Patients of non-Hispanic Black race/ethnicity (aRR = 1.25; 95% CI = 1.06-1.48) and those with Medicare insurance (aRR = 1.13; 95% CI = 1.04-1.23) were more likely to be screened. Screening was universally acceptable to navigators and generally acceptable to patients. Systems-based supports for improving implementation were identified. CONCLUSIONS: Social needs screening was acceptable, yet with modest implementation. Continued systems-based efforts to integrate social needs screening in medical care are needed.
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Neoplasias da Mama , Navegação de Pacientes , Humanos , Feminino , Neoplasias da Mama/diagnóstico , Pessoa de Meia-Idade , Estudos Prospectivos , Idoso , Avaliação das Necessidades , Boston , AdultoRESUMO
Despite recommendations for ongoing care after pregnancy, many individuals do not see a primary care clinician within the first postpartum year, missing a critical window to engage reproductive-age individuals in primary care. We administered an anonymous, cross-sectional, trilingual survey at a large urban safety-net hospital to assess postpartum individuals' preferences, health concerns, and anticipated barriers to primary care during the year after pregnancy. While 90% of respondents preferred a visit within one year, most individuals - including those with complicated pregnancies - did not recall a primary care recommendation from their pregnancy care team. Respondents reported a variety of primary care-amenable health concerns, and many social and logistical barriers to care. Preference for virtual care increased if self-monitoring tools were hypothetically available, indicating virtual visits may improve primary care access.
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Acessibilidade aos Serviços de Saúde , Preferência do Paciente , Atenção Primária à Saúde , Humanos , Feminino , Adulto , Estudos Transversais , Gravidez , Inquéritos e Questionários , Cuidado Pós-Natal/métodos , Adolescente , Período Pós-Parto/psicologia , Adulto JovemRESUMO
Despite efforts of professional organizations and government agencies to solidify the professional identities of community health workers and patient navigators in the oncology workforce, the scientific literature perpetuates wide variation in the nomenclature used to define these natural change agents, who have proven efficacy in improving access to quality cancer care for historically marginalized populations. To disseminate, sustain, and scale-up these life-saving roles in cancer care, the oncology field must come together now to adopt clear and consistent job titles and occupational identities.
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Agentes Comunitários de Saúde , Navegação de Pacientes , Humanos , Oncologia , Recursos HumanosRESUMO
BACKGROUND: For this study, the authors examined whether specific programmatic factors were associated with the sustainability of patient navigation programs. METHODS: This cross-sectional survey explored navigation programmatic factors associated with 3 measures of sustainability: 1) length of program existence, 2) reliance on sustainable funding, and 3) participation in alternative payment models. In total, 750 patient navigators or program administrators affiliated with oncology navigation programs in clinical-based and community-based settings completed the survey between April and July 2019. RESULTS: Associations were observed between both accreditation and work setting and measures of program sustainability. Accredited programs and larger, more resourced clinical institutions were particularly likely to exhibit multiple measures of sustainability. The results also identified significant gaps at the programmatic level in data collection and reporting among navigation programs, but no association was observed between programmatic data collection/reporting and sustainability. CONCLUSIONS: Navigation is not currently a reimbursable service and has historically been viewed as value-added in oncology settings. Therefore, factors associated with sustainability are critical to understand how to build a framework for successful navigation programs within the current system and also to develop the case for potential reimbursement in the future.
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Navegação de Pacientes , Estudos Transversais , Humanos , Oncologia , Navegação de Pacientes/métodos , Avaliação de Programas e Projetos de Saúde , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Sociolegal barriers to cancer care are defined as health-related social needs like affordable healthy housing, stable utility service, and food security that may be remedied by public policy, law, regulation, or programming. Legal support has not been studied in cancer care. METHODS: The authors conducted a randomized controlled trial of patients who had newly diagnosed cancer at a safety-net medical center in Boston from 2014 through 2017, comparing standard patient navigation versus enhanced navigation partnered with legal advocates to identify and address sociolegal barriers. English-speaking, Spanish-speaking, or Haitian Creole-speaking patients with breast and lung cancer were eligible within 30 days of diagnosis. The primary outcome was timely treatment within 90 days of diagnosis. Secondary outcomes included patient-reported outcomes (distress, cancer-related needs, and satisfaction with navigation) at baseline and at 6 months. RESULTS: In total, 201 patients with breast cancer and 19 with lung cancer enrolled (response rate, 78%). The mean patient age was 55 years, 51% of patients were Black and 22% were Hispanic, 20% spoke Spanish and 8% spoke Haitian Creole, 73% had public health insurance, 77% reported 1 or more perceived sociolegal barrier, and the most common were barriers to housing and employment. Ninety-six percent of participants with breast cancer and 73% of those with lung cancer initiated treatment within 90 days. No significant effect of enhanced navigation was observed on the receipt of timely treatment among participants with breast cancer (odds ratio, 0.88; 95% CI, 0.17-4.52) or among those with lung cancer (odds ratio, 4.00; 95% CI, 0.35-45.4). No differences in patient-reported outcomes were observed between treatment groups. CONCLUSIONS: Navigation enhanced by access to legal consultation and support had no impact on timely treatment, patient distress, or patient needs. Although most patients reported sociolegal barriers, few required intensive legal services that could not be addressed by navigators. LAY SUMMARY: In patients with cancer, the experience of sociolegal barriers to care, such as unstable housing, utility services, or food insecurity, is discussed. Addressing these barriers through legal information and assistance may improve care. This study compares standard patient navigation versus enhanced navigation partnered with legal advocates for patients with breast and lung cancers. Almost all patients in both navigation groups received timely care and also reported the same levels of distress, needs, and satisfaction with navigation. Although 75% of patients in the study had at least 1 sociolegal barrier identified, few required legal advocacy beyond what a navigator who received legal information and coaching could provide.
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Neoplasias da Mama , Neoplasias Pulmonares , Navegação de Pacientes , Neoplasias da Mama/diagnóstico , Neoplasias da Mama/terapia , Feminino , Haiti , Humanos , Seguro Saúde , Pessoa de Meia-IdadeRESUMO
BACKGROUND: Patient navigation improves cancer care delivery for those most at risk for poor outcomes. Lack of sustainable funding threatens the full integration of navigation services into health care delivery systems. Standardized navigation metrics that document impact and identify best practices are necessary to support sustainability. METHODS: The National Navigation Roundtable administered a web-based, cross-sectional survey to oncology patient navigation programs to identify barriers and facilitators to the use of navigation metrics. The 38-item survey asked about data-collection practices and specific navigation metrics used by the program. Exploratory and descriptive statistics were used to identify factors associated with data collection and reporting. RESULTS: Seven hundred fifty respondents from across the country represented navigation programs across the continuum of care. Although 538 respondents (72%) reported participating in routine data collection, only one-half of them used data for reporting purposes. For the 374 programs that used electronic health records, only 40% had discrete, reportable navigation fields, and 25% had an identifier for navigated patients. Program funding was identified as the only characteristic associated with data collection, whereas the type of data collected was associated with work setting, participation in alternative payment models, and where on the continuum navigation services are provided. Respondents participating in an oncology accreditation program were more likely to collect specific outcome metrics across the continuum and to use those data for reporting purposes. The most common barriers to data collection were time (55%) and lack of support for complex data systems and/or platforms (50%). CONCLUSIONS: Inconsistent data collection and reporting of oncology navigation programs remain a threat to sustainability. Aligning data collection with oncology accreditation, funding, and reimbursement is a viable path forward.
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Neoplasias , Navegação de Pacientes , Estudos Transversais , Atenção à Saúde , Humanos , Oncologia , Neoplasias/terapia , Navegação de Pacientes/métodosRESUMO
BACKGROUND: Implementing city-wide patient navigation processes that support patients across the continuum of cancer care is impeded by a lack of standardized tools to integrate workflows and reduce gaps in care. The authors present an actionable workflow process mapping protocol for navigation process planning and improvement based on methods developed for the Translating Research Into Practice study. METHODS: Key stakeholders at each study site were identified through existing community partnerships, and data on each site's navigation processes were collected using mixed methods through a series of team meetings. The authors used Health Quality Ontario's Quality Improvement Guide, service design principles, and key stakeholder input to map the collected data onto a template structured according to the case-management model. RESULTS: Data collection and process mapping exercises resulted in a 10-step protocol that includes: 1) workflow mapping procedures to guide data collection on the series of activities performed by health care personnel that comprise a patient's navigation experience, 2) a site survey to assess program characteristics, 3) a semistructured interview guide to assess care coordination workflows, 4) a site-level swim lane workflow process mapping template, and 5) a regional high-level process mapping template to aggregate data from multiple site-level process maps. CONCLUSIONS: This iterative, participatory approach to data collection and process mapping can be used by improvement teams to streamline care coordination, ultimately improving the design and delivery of an evidence-based navigation model that spans multiple treatment modalities and multiple health systems in a metropolitan area. This protocol is presented as an actionable toolkit so the work may be replicated to support other quality-improvement initiatives and efforts to design truly patient-centered breast cancer treatment experiences. LAY SUMMARY: Evidence-based patient navigation in breast cancer care requires the integration of services through each phase of cancer treatment. The Translating Research Into Practice study aims to implement patient navigation for patients with breast cancer who are at risk for delays and are seeking care across 6 health systems in Boston, Massachusetts. The authors designed a 10-step protocol outlining procedures and tools that support a systematic assessment for health systems that want to implement breast cancer patient navigation services for patients who are at risk for treatment delays.
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Neoplasias da Mama , Navegação de Pacientes , Neoplasias da Mama/terapia , Feminino , Pessoal de Saúde , Humanos , Assistência ao Paciente , Navegação de Pacientes/métodos , Fluxo de TrabalhoRESUMO
BACKGROUND: In the current nationwide study, the authors used latent class analysis (LCA) to identify classes of cancer patient navigators (CPNs) and examined whether class membership and 12 indicators were related to navigator role retention. METHODS: By using data from 460 CPNs in the United States, LCA identified classes (ie, homogenous subgroups) of CPNs with the following indicators: type of CPN (clinical vs nonclinical), education level, area(s) of the cancer care continuum in which the CPN provided patient navigation, region and urbanity where the CPN provided services, organizational work setting, and patient navigation program funding source. The associations of navigator retention with class membership and each indicator were examined using χ2 tests. RESULTS: LCA identified 3 classes of CPNs. Classes 1 and 3 were conceptualized as distinct, homogeneous subgroups of clinical CPNs that appeared to differ mainly on their likelihood of engagement in outreach, survivorship, palliative care, and end-of-life patient navigation. Class 2 was conceptualized as a nonclinical CPN subgroup that was distinct primarily based on their high endorsement of employment in programs, which are at least partially funded by grants and engagement in earlier stages of patient navigation (eg, early detection). The provision of survivorship and treatment patient navigation was related to navigator role retention, with senior CPNs providing these patient navigation services more than novice CPNs. CONCLUSIONS: The current study highlights 3 distinct classes of CPNs, provides initial information regarding determinants of navigator retention, and makes several recommendations for future patient navigation research.
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Neoplasias , Navegação de Pacientes , Continuidade da Assistência ao Paciente , Humanos , Neoplasias/terapia , Cuidados Paliativos , Estados UnidosRESUMO
BACKGROUND: The evidence continues to build in support of implementing patient navigation to reduce barriers and increase access to care. However, health disparities remain in cancer outcomes. The goal of the National Navigation Roundtable (NNRT) is to serve as a convener to help support the field of navigation to address equity. METHODS: To examine the progress and opportunities for navigation, the NNRT submitted a collection of articles based on the results from 2 dedicated surveys and contributions from member organizations. The intent was to help inform what we know about patient navigation since the last dedicated examination in this journal 10 years ago. RESULTS: The online survey of >700 people described navigators and examined sustainability and policy issues and the longevity, specific role and function, and impact of clinical and nonclinical navigators in addition to the role of training and supervision. In addition, a full examination of coronavirus disease 2019 and contributions from member organizations helped further define progress and future opportunities to meet the needs of patients through patient navigation. CONCLUSIONS: To achieve equity in cancer care will demand the sustained action of virtually every component of the cancer care system. It is the hope and intent of the NNRT that the information presented in this supplement will be a catalyst for action in this collective action approach.
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COVID-19 , Neoplasias , Navegação de Pacientes , COVID-19/epidemiologia , Humanos , Neoplasias/terapia , Inquéritos e QuestionáriosRESUMO
Several common adverse pregnancy outcomes can reveal subclinical or latent cardiovascular disease (CVD) risk, transiently exposed through the physiologic stress of pregnancy. The year after pregnancy may be a singular opportunity to identify and initiate treatment for CVD risk, even before the onset of traditional CVD risk factors. However, clinical guidance regarding CVD risk management after adverse pregnancy outcomes is lacking. We therefore conducted a systematic review of US clinical practice guidelines and professional society recommendations to inform primary care-based CVD risk management after adverse pregnancy outcomes. We identified 13 relevant publications. While most recommendations were based on limited or weak evidence, we identified several areas of consensus. First, individuals with an adverse pregnancy outcome associated with future CVD are likely to benefit from CVD risk assessment-accompanied by education, counseling, and support for lifestyle modification-beginning within the first postpartum year. Second, among clinicians, clear and consistent documentation about adverse pregnancy outcomes and recommended follow-up is important to coordinate care after pregnancy. In addition, patients need to be informed about their pregnancy complications and associated CVD risks, so that they can make informed health care and lifestyle decisions. Finally, in general, CVD prevention in the year after an adverse pregnancy outcome focuses on lifestyle modification, reserving pharmacotherapy for the highest-risk patients and those with traditional CVD risk factors. While postpartum lifestyle interventions show promise for reducing CVD risk after adverse pregnancy outcomes, continued research to determine the optimal content, timing, and long-term effects of such interventions is needed.
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Doenças Cardiovasculares , Doenças Cardiovasculares/epidemiologia , Doenças Cardiovasculares/prevenção & controle , Feminino , Humanos , Estilo de Vida , Gravidez , Resultado da Gravidez/epidemiologia , Atenção Primária à Saúde , Fatores de Risco , Gestão de RiscosRESUMO
PURPOSE: Healthcare systems contribute to disparities in breast cancer outcomes. Patient navigation is a widely cited system-based approach to improve outcomes among populations at risk for delays in care. Patient navigation programs exist in all major Boston hospitals, yet disparities in outcomes persist. The objective of this study was to conduct a baseline assessment of navigation processes at six Boston hospitals that provide breast cancer care in preparation for an implementation trial of standardized navigation across the city. METHODS: We conducted a mixed methods study in six hospitals that provide treatment to breast cancer patients in Boston. We administered a web-based survey to clinical champions (n = 7) across six sites to collect information about the structure of navigation programs. We then conducted in-person workflow assessments at each site using a semi-structured interview guide to understand site-specific implementation processes for patient navigation programs. The target population included administrators, supervisors, and patient navigators who provided breast cancer treatment-focused care. RESULTS: All sites offered patient navigation services to their patients undergoing treatment for breast cancer. We identified wide heterogeneity in terms of how programs were funded/resourced, which patients were targeted for navigation, the type of services provided, and the continuity of those services relative to the patient's cancer treatment. CONCLUSIONS: The operationalization of patient navigation varies widely across hospitals especially in relation to three core principles in patient navigation: providing patient support across the care continuum, targeting services to those patients most likely to experience delays in care, and systematically screening for and addressing patients' health-related social needs. Gaps in navigation across the care continuum present opportunities for intervention. TRIAL REGISTRATION: Clinical Trial Registration Number NCT03514433, 5/2/2018.
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Neoplasias da Mama , Navegação de Pacientes , Boston , Neoplasias da Mama/terapia , Continuidade da Assistência ao Paciente , Atenção à Saúde , Feminino , HumanosRESUMO
BACKGROUND: In 2018 Translating Research Into Practice (TRIP), an evidence-based patient navigation intervention aimed at addressing breast cancer care disparities, was implemented across six Boston hospitals. This study assesses patient navigator team member perspectives regarding implementation barriers and facilitators one year post-study implementation. METHODS: We conducted in-depth qualitative interviews at the six sites participating in the pragmatic TRIP trial from December 2019 to March 2021. Navigation team members involved with breast cancer care navigation processes at each site were interviewed at least 12 months after intervention implementation. Interview questions were designed to address domains of the Consolidated Framework for Implementation Research (CFIR), focusing on barriers and facilitators to implementing the intervention that included 1) rigorous 11-step guidelines for navigation, 2) a shared patient registry and 3) a social risk screening and referral program. Analysis was structured using deductive codes representing domains and constructs within CFIR. RESULTS: Seventeen interviews were conducted with patient navigators, their supervisors, and designated clinical champions. Participants identified the following benefits provided by the TRIP intervention: 1) increased networking and connections for navigators across clinical sites (Cosmopolitanism), 2) formalization of the patient navigation process (Goals and Purpose, Access to Knowledge and Information, and Relative Advantage), and 3) flexibility within the TRIP intervention that allowed for diversity in implementation and use of TRIP components across sites (Adaptability). Barriers included those related to documentation requirements (Complexity) and the structured patient follow up guidelines that did not always align with the timeline of existing site navigation processes (Relative Priority). CONCLUSIONS: Our analysis provides data using real-world experience from an intervention trial in progress, identifying barriers and facilitators to implementing an evidence-based patient navigation intervention for breast cancer care. We identified core processes that facilitated the navigators' patient-focused tasks and role on the clinical team. Barriers encountered reflect limitations of navigator funding models and high caseload. TRIAL REGISTRATION: Clinical Trial Registration Number NCT03514433 , 5/2/2018.
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Neoplasias da Mama , Navegação de Pacientes , Boston , Neoplasias da Mama/terapia , Feminino , Humanos , Pesquisa Qualitativa , Encaminhamento e ConsultaRESUMO
BACKGROUND: Limited health literacy is a driver of cancer disparities and associated with less participation in medical decisions. Mammography screening decisions are an exemplar of where health literacy may impact decision-making and outcomes. OBJECTIVE: To describe informational needs and shared decision-making (SDM) experiences among women ages 40-54 who have limited health literacy and primary care providers (PCPs). DESIGN: Qualitative, in-depth interviews explored experiences with mammography counseling and SDM. PARTICIPANTS: Women ages 40-54 with limited health literacy and no history of breast cancer or mammogram in the prior 9 months were approached before a primary care visit at a Boston academic, safety-net hospital. PCPs practicing at this site were eligible for PCP interviews. APPROACH: Interviews were audio-recorded and transcribed verbatim. A set of deductive codes for each stakeholder group was developed based on literature and the interview guide. Inductive codes were generated during codebook development. Codes were compared within and across patient and PCP interviews to create themes relevant to mammography decision-making. KEY RESULTS: The average age of 25 interviewed patients was 46.5; 18 identified as black, 3 as Hispanic, 2 as non-Hispanic white, and 2 had no recorded race or ethnicity. Of 20 PCPs, 15 were female; 12 had practiced for >5 years. Patients described a lack of technical (appropriate tests and what they do) and process (what happens during a mammogram visit) knowledge, viewing these as necessary for decision-making. PCPs were reluctant to engage patients with limited health literacy in SDM due to time constraints and feared that increased information might confuse patients or deter them from having mammograms. Both groups felt pre-visit education would facilitate mammography-related SDM during clinical visits. CONCLUSION: Both patients and PCPs perceived a need for tools to relay technical and process knowledge about mammography prior to clinical encounters to address the scope of information that patients with limited health literacy desired.
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Letramento em Saúde , Adulto , Tomada de Decisões , Detecção Precoce de Câncer , Feminino , Humanos , Masculino , Mamografia , Pessoa de Meia-Idade , Participação do Paciente , Atenção Primária à SaúdeRESUMO
Starting breast cancer screening at age 40 versus 50 may increase potential harms frequency with a small mortality benefit. Younger women's screening decisions, therefore, may be complex. Shared decision-making (SDM) is recommended for women under 50 and may support women under 55 for whom guidelines vary. How women with limited health literacy (LHL) approach breast cancer screening decision-making is less understood, and most SDM tools are not designed with their input. This phenomenological study sought to characterize mammography counseling experiences among women with LHL and primary care providers (PCPs). Women ages 40-54 with LHL who had no history of breast cancer or mammogram within 9 months were approached before a primary care visit at a safety-net hospital. PCPs at this site were invited to participate. Qualitative interviews explored mammography counseling experiences. Patients also reviewed sample information materials. A constant comparison technique generated four themes salient to 25 patients and 20 PCPs: addressing family history versus comprehensive risk assessment; potential mammography harms discussions; information delivery preferences; and integrating pre-visit information tools. Findings suggest that current counseling techniques may not be responsive to patient-identified needs. Opportunities exist to improve how mammography information is shared and increase accessibility across the health literacy spectrum.
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Comunicação , Letramento em Saúde/estatística & dados numéricos , Mamografia/efeitos adversos , Pacientes/psicologia , Relações Médico-Paciente , Médicos de Atenção Primária/psicologia , Adulto , Neoplasias da Mama/diagnóstico , Aconselhamento , Tomada de Decisão Compartilhada , Detecção Precoce de Câncer , Feminino , Humanos , Pessoa de Meia-Idade , Pacientes/estatística & dados numéricos , Atenção Primária à Saúde , Pesquisa Qualitativa , Medição de RiscoRESUMO
BACKGROUND: There is a need for guidelines on patient navigation activities to promote both the quality of patient navigation and the standards of reimbursement for these services because a lack of reimbursement is a major barrier to the implementation, maintenance, and sustainability of these programs. METHODS: A broad community-based participatory research process was used to identify the needs of patients for navigation. A panel of stakeholders of clinical providers was convened to identify specific activities for navigators to address the needs of patients and providers with the explicit goal of reducing delays in the initiation of cancer treatment and improving adherence to the care plan. RESULTS: Specific activities were identified that could be generalized to all patient navigation programs for care during active cancer management to address the needs of vulnerable communities. CONCLUSIONS: Oncology programs that seek to implement lay patient navigation may benefit from the adoption of these activities for quality monitoring. Such activities are necessary as we consider reimbursement strategies for navigators without clinical training or licensure.
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Neoplasias da Mama/epidemiologia , Acessibilidade aos Serviços de Saúde , Assistência ao Paciente , Navegação de Pacientes , Neoplasias da Mama/diagnóstico , Neoplasias da Mama/terapia , Continuidade da Assistência ao Paciente , Feminino , Humanos , Assistência ao Paciente/métodos , Assistência ao Paciente/normas , Navegação de Pacientes/métodos , Navegação de Pacientes/normasRESUMO
PURPOSE: The purpose of the study was to investigate the association between pre- or perinatal factors and breast cancer risk among African American women. METHODS: Participants in the Black Women's Health Study, a prospective cohort of 59,000 African American women, reported birth weight, preterm birth, twin or triplet status, maternal age at birth, birth order, and having been breastfed during infancy at various times during follow-up from 1997 to 2015. Numbers of incident cases ranged from 312 for breastfed analyses to 1,583 for twin or triplet analyses. Using multivariable Cox proportional hazards regression, we estimated hazard ratios (HRs) and 95% confidence intervals (CIs) for associations between each factor and breast cancer risk overall and by estrogen receptor (ER) status. RESULTS: Compared to birth weights of 5 lbs. 8 oz.-8 lbs. 13 oz., low (< 5 lbs. 8 oz.) and high (> 8 lbs. 13 oz.) birth weights were associated with increased breast cancer risk; HRs (95% CI) were 1.19 (0.98-1.44) and 1.26 (0.97-1.63), respectively. Associations were similar by ER status. Having been born to a mother aged ≥ 35 years versus < 20 years was associated with risk of ER+ (HR 1.59, 95% CI 1.10-2.29), but not ER- breast cancer. Other perinatal factors were not associated with breast cancer. CONCLUSION: African American women with a low or high birth weight or born to older mothers may have increased breast cancer risk. Trends towards delayed child birth and higher birth weights, coupled with disproportionately high rates of low birth weight among African Americans, may contribute to increases in breast cancer incidence.
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Peso ao Nascer , Negro ou Afro-Americano/estatística & dados numéricos , Neoplasias da Mama/epidemiologia , Adulto , Ordem de Nascimento , Aleitamento Materno , Estudos de Coortes , Feminino , Humanos , Incidência , Pessoa de Meia-Idade , Parto , Gravidez , Modelos de Riscos Proporcionais , Estudos Prospectivos , Fatores de Risco , Saúde da MulherRESUMO
BACKGROUND: Legislation requiring mammography facilities to notify women if they have dense breast tissue found on mammography has been enacted in 34 US states. The impact of dense breast notifications (DBNs) on women with limited English proficiency (LEP) is unknown. OBJECTIVE: This study sought to understand Spanish-speaking women's experience receiving DBNs in a Massachusetts safety-net hospital. DESIGN: Eligible women completed one audio-recorded, semi-structured interview via telephone with a native Spanish-speaking research assistant trained in qualitative methods. Interviews were professionally transcribed verbatim and translated. The translation was verified by a third reviewer to ensure fidelity with audio recordings. PARTICIPANTS: Nineteen Spanish-speaking women ages 40-74 who received mammography with a normal result and recalled receiving a DBN. APPROACH: Using the verified English transcripts, we conducted a content analysis to identify women's perceptions and actions related to receiving the notification. A structured codebook was developed. Transcripts were independently coded and assessed for agreement with a modification of Cohen's kappa. Content codes were grouped to build themes related to women's perceptions and actions after receiving a DBN. KEY RESULTS: Nineteen Spanish-speaking women completed interviews. Nine reported not receiving the notification in their native language. Four key themes emerged: (1) The novelty of breast density contributed to notification-induced confusion; (2) women misinterpreted key messages in the notification; (3) varied actions were taken to seek further information; and (4) women held unrealized expectations and preferences for follow-up. CONCLUSIONS: Not having previous knowledge of breast density and receiving notifications in English contributed to confusion about its meaning and inaccurate interpretations of key messages by Spanish speakers. Tools that promote understanding should be leveraged in seeking equity in risk-based breast cancer screening for women with dense breasts.