RESUMO
BACKGROUND: Little is known about the heterogeneous nature of financial hardship in younger patients with metastatic disease and the extent to which insurance protects against it. We examine the association between insurance status and multidimensional indicators of financial hardship in a national sample of women with metastatic breast cancer. METHODS: We conducted a national, retrospective online survey in partnership with the Metastatic Breast Cancer Network. Eligible participants were ≥18 years, diagnosed with metastatic breast cancer, and able to respond in English. We estimated multivariate generalized linear models predicting two distinct dimensions of financial hardship-financial insecurity (the ability to afford care and living costs) and financial distress (the extent of emotional/psychological distress experienced due to costs)-as a function of insurance status. RESULTS: Participants responded from 41 states (N = 1054; median age: 44 years). Overall, 30% were uninsured. Financial insecurity was more frequently reported by uninsured respondents. In adjusted analyses, uninsured participants were more likely than insured participants to report contact by debt collectors (adjusted risk ratio [aRR]: 2.38 [2.06, 2.76]) and being unable to meet monthly expenses (aRR: 2.11 [1.68, 2.66]). Financial distress was reported more frequently by insured participants. For example, insured participants were more likely to worry about future financial problems due to cancer and distress about lack of cost transparency. After adjustment, uninsured participants remained about half as likely as insured participants to report financial distress. CONCLUSIONS: Young adult women with metastatic cancer reported a high burden of financial toxicity. Importantly, insurance does not protect against financial distress; however, the uninsured are the most materially vulnerable.
Assuntos
Neoplasias da Mama , Pessoas sem Cobertura de Seguro de Saúde , Humanos , Feminino , Adulto Jovem , Estados Unidos/epidemiologia , Adulto , Seguro Saúde , Estresse Financeiro , Neoplasias da Mama/epidemiologia , Neoplasias da Mama/terapia , Estudos Retrospectivos , Gastos em SaúdeRESUMO
Background: Cancer patients can experience healthcare system-related challenges during the course of their treatment. Yet, little is known about how these challenges might affect the quality and completion of cancer treatment for all patients, and particularly for patients of color. Accountability for Cancer Care through Undoing Racism and Equity is a multi-component, community-based participatory research intervention to reduce Black-White cancer care disparities. This formative work aimed to understand patients' cancer center experiences, explore racial differences in experiences, and inform systems-level interventions.Methods: Twenty-seven breast and lung cancer patients at two cancer centers participated in focus groups, grouped by race and cancer type. Participants were asked about what they found empowering and disempowering regarding their cancer care experiences. The community-guided analysis used a racial equity approach to identify racial differences in care experiences.Results: For Black and White patients, fear, uncertainty, and incomplete knowledge were disempowering; trust in providers and a sense of control were empowering. Although participants denied differential treatment due to race, analysis revealed implicit Black-White differences in care.Conclusions: Most of the challenges participants faced were related to lack of transparency, such that improvements in communication, particularly two-way communication could greatly improve patients' interaction with the system. Pathways for accountability can also be built into a system that allows patients to find solutions for their problems with the system itself. Participants' insights suggest the need for patient-centered, systems-level interventions to improve care experiences and reduce disparities.
Assuntos
Neoplasias , Racismo , Comunicação , Pesquisa Participativa Baseada na Comunidade , Grupos Focais , Disparidades em Assistência à Saúde , Humanos , Neoplasias/terapiaRESUMO
PURPOSE: Electronic patient-reported outcomes (ePROs) are increasingly being used for symptom monitoring during routine cancer care, but have rarely been evaluated in diverse patient populations. We assessed ePRO user experiences and perceived value among Black and White cancer patients. METHODS: We recruited 30 Black and 49 White bladder and prostate cancer patients from a single institution. Participants reported symptoms using either a web-based or automated telephone interface over 3 months and completed satisfaction surveys and qualitative interviews focused on user experiences and value. Using a narrative mixed methods approach, we evaluated overall and race-specific differences in ePRO user experiences and perceived value. RESULTS: Most participants selected the web-based system, but Blacks were more likely to use the automated telephone-based system than Whites. In satisfaction surveys, Whites more commonly reported ease in understanding and reporting symptoms compared with Blacks. Blacks more often reported that the ePRO system was helpful in facilitating symptom-related discussions with clinicians. During interviews, Blacks described how the ePRO helped them recognize symptoms, while Whites found value in better understanding and tracking symptoms longitudinally. Blacks also expressed preferences for paper-based ePRO options due to perceived ease in better understanding of symptom items. CONCLUSION: Electronic patient-reported outcomes are perceived as valuable for variable reasons by Black and White cancer populations, with greater perceived value for communicating with clinicians reported among Blacks. To optimize equitable uptake of ePROs, oncology practices should offer several ePRO options (e.g., web-based, phone-based), as well as paper-based options, and consider the e-health literacy needs of patients during implementation.
Assuntos
Neoplasias da Próstata , Bexiga Urinária , Eletrônica , Humanos , Masculino , Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida/psicologia , Fatores RaciaisRESUMO
OBJECTIVE: To assess the feasibility of enrollment and collecting patient-reported outcome (PRO) data as part of routine clinical urologic care for bladder and prostate cancer patients and examine overall patterns and racial variations in PRO use and symptom reports over time. SUBJECTS/PATIENTS AND METHODS: We recruited 76 patients (nâ¯=â¯29 Black and nâ¯=â¯47 White) with prostate or bladder cancer at a single, comprehensive cancer center. The majority of prostate cancer patients had intermediate risk (57%) disease and underwent either radiation or prostatectomy. Over half (58%) of bladder cancer patients had muscle invasive disease and underwent cystectomy. Patients were asked to complete PRO symptom surveys using their preferred mode [web- or phone-based interactive voice response (IVR)]. Symptom summary reports were shared with providers during visits. Surveys were completed at 3 time points and assessed urinary, sexual, gastrointestinal, anxiety/depression, and sleep symptoms. Feasibility of enrollment and survey completion were calculated, and linear mixed effects models estimated differences in outcomes by race and time. RESULTS: Sixty three percent of study participants completed all PRO measures at all 3 time points. Black patients were more likely to select IVR as their survey mode (40% vs. 13%, P < 0.05), and less likely to complete all surveys (55% vs. 74%, Pâ¯=â¯0.13). Patients using IVR were also less likely to complete all surveys (41% vs. 69%, Pâ¯=â¯0.046). CONCLUSIONS: Reported preferences for survey mode and completion rates differ by race, which may influence survey completion rates and highlight potential obstacles for equitable implementation of PROs into clinical care.
Assuntos
População Negra , Medidas de Resultados Relatados pelo Paciente , Neoplasias da Próstata/terapia , Neoplasias da Bexiga Urinária/terapia , População Branca , Idoso , Estudos de Viabilidade , Feminino , Humanos , Masculino , Pessoa de Meia-IdadeRESUMO
OBJECTIVE: To understand the relationship between patient experience, as measured by scores on the Consumer Assessment of Healthcare Providers and Systems (CAHPS®) survey, and clinical and financial outcomes among older cancer survivors. MATERIALS AND METHODS: We analyzed the records of all Fee-for-Service (FFS) Medicare beneficiaries 66 years and older who completed one CAHPS survey from 2001 to 2004 or 2007-2013 with one of the five following cancer types: breast, bladder, colorectal, lung, or prostate; and completed a CAHPS survey within 5 years of cancer diagnosis date. We conducted a multivariate analysis, controlling for clinical and demographic variables, to evaluate the association between excellent CAHPS scores and the following clinical and financial outcomes: mortality, emergency department visits, and total healthcare expenditures. RESULTS: A total of 7395 individuals were present in our cohort, with 57% being male and 85.7% non-Hispanic White. Breakdown of the cohort by cancer site is as follows: prostate (40.4%), breast (28.6%), colorectal (14.0%), lung (9.4%), and bladder (7.6%). When looking at the relationship between CAHPS scores and clinical outcomes, there was no significant difference between excellent and non-excellent CAHPS score respondents in all three of the clinical outcomes studied. Furthermore, there was no association between ED utilization and patient experience scores when stratifying by cancer site and race/ethnicity among this cohort. CONCLUSION: In this cohort, a highly rated patient experience, as measured by responses on the CAHPS survey, is not associated with improved clinical outcomes among older cancer survivors.
Assuntos
Sobreviventes de Câncer , Neoplasias , Idoso , Planos de Pagamento por Serviço Prestado , Feminino , Pesquisas sobre Atenção à Saúde , Gastos em Saúde , Humanos , Masculino , Medicare , Neoplasias/terapia , Avaliação de Resultados da Assistência ao Paciente , Satisfação do Paciente , Estados Unidos/epidemiologiaRESUMO
BACKGROUND: Cancer is the leading cause of death among Hispanics/Latinos. Thus, understanding health-related quality of life (HRQOL) needs among this diverse racial/ethnic group is critical. Using Ferrell's multidimensional framework for measuring QOL, we synthesized evidence on HRQOL needs among Hispanic/Latino cancer survivors. METHODS: We searched MEDLINE/PubMed, EMBASE, CINAHL, and PsycINFO, for English language articles published between 1995 and January 2020, reporting HRQOL among Hispanic/Latino cancer survivors in the USA. RESULTS: Of the 648 articles reviewed, 176 met inclusion criteria, with 100 of these studies focusing exclusively on breast cancer patients and no studies examining end-of-life HRQOL issues. Compared with other racial/ethnic groups, Hispanics/Latinos reported lower HRQOL and a higher symptom burden across multiple HRQOL domains. Over 80% of studies examining racial/ethnic differences in psychological well-being (n = 45) reported worse outcomes among Hispanics/Latinos compared with other racial/ethnic groups. Hispanic/Latino cancer survivors were also more likely to report suboptimal physical well-being in 60% of studies assessing racial/ethnic differences (n = 27), and Hispanics/Latinos also reported lower social well-being relative to non-Hispanics/Latinos in 78% of studies reporting these outcomes (n = 32). In contrast, reports of spiritual well-being and spirituality-based coping were higher among Hispanics/Latinos cancer survivors in 50% of studies examining racial/ethnic differences (n = 15). DISCUSSION: Findings from this review point to the need for more systematic and tailored interventions to address HRQOL needs among this growing cancer survivor population. Future HRQOL research on Hispanics/Latinos should evaluate variations in HRQOL needs across cancer types and Hispanic/Latino subgroups and assess HRQOL needs during metastatic and end-of-life disease phases.
Assuntos
Sobreviventes de Câncer/psicologia , Hispânico ou Latino/psicologia , Neoplasias/mortalidade , Qualidade de Vida/psicologia , Feminino , Humanos , Masculino , Estados UnidosRESUMO
This retrospective, secondary qualitative analysis investigates whether health system factors influence social support among Black and white breast and lung cancer survivors and racial differences in support. These data come from race- and cancer-stratified focus groups (n = 6) and interviews (n = 2) to inform a randomized controlled trial utilizing antiracism and community-based participatory research approaches. Findings indicate social support was helpful for overcoming treatment-related challenges, including symptom management and patient-provider communication; racial differences in support needs and provision were noted. Resources within individual support networks reflect broader sociostructural factors. Reliance on family/friends to fill gaps in cancer care may exacerbate racial disparities.
Assuntos
Neoplasias da Mama/epidemiologia , Atenção à Saúde/etnologia , Neoplasias Pulmonares/epidemiologia , Fatores Raciais , Apoio Social , Neoplasias da Mama/mortalidade , Sobreviventes de Câncer , Feminino , Humanos , Neoplasias Pulmonares/mortalidade , Masculino , Estudos Retrospectivos , População BrancaRESUMO
BACKGROUND: Lung cancer is the leading cause of cancer death in the US, and significant racial disparities exist in lung cancer outcomes. For example, Black men experience higher lung cancer incidence and mortality rates than their White counterparts. New screening recommendations for low-dose computed tomography (LDCT) promote earlier detection of lung cancer in at-risk populations and can potentially help mitigate racial disparities in lung cancer mortality if administered equitably. Yet, little is known about the extent of racial differences in uptake of LDCT. OBJECTIVE: To evaluate potential racial disparities in LDCT screening in a large community-based cancer center in central North Carolina. METHODS: We conducted a retrospective study of the initial patients undergoing LDCT in a community-based cancer center (n = 262). We used the Pearson chi-squared test to assess potential racial disparities in LDCT screening. RESULTS: Study results suggest that Black patients may be less likely than White patients to receive LDCT screening when eligible (χ2 = 51.41, p < 0.0001). CONCLUSION: Collaboration among healthcare providers, researchers, and decision makers is needed to promote LDCT equity.
Assuntos
Serviços de Saúde Comunitária , Detecção Precoce de Câncer , Promoção da Saúde/organização & administração , Disparidades em Assistência à Saúde/organização & administração , Neoplasias Pulmonares , Tomografia Computadorizada por Raios X , Negro ou Afro-Americano/estatística & dados numéricos , Serviços de Saúde Comunitária/métodos , Serviços de Saúde Comunitária/normas , Serviços de Saúde Comunitária/estatística & dados numéricos , Detecção Precoce de Câncer/métodos , Detecção Precoce de Câncer/normas , Detecção Precoce de Câncer/estatística & dados numéricos , Feminino , Disparidades em Assistência à Saúde/etnologia , Humanos , Neoplasias Pulmonares/diagnóstico , Neoplasias Pulmonares/etnologia , Masculino , Pessoa de Meia-Idade , North Carolina/epidemiologia , Melhoria de Qualidade , Medição de Risco , Tomografia Computadorizada por Raios X/métodos , Tomografia Computadorizada por Raios X/estatística & dados numéricos , População Branca/estatística & dados numéricosRESUMO
INTRODUCTION: Cost sharing can deter the use of health services and act as a potential contributor to racial/ethnic disparities in cancer. The Affordable Care Act required most health plans to cover, without cost sharing, preventive services, including colorectal cancer screening. Population-based data were used to estimate the impact of the Affordable Care Act's cost-sharing provision (together with other Affordable Care Act provisions targeting preventive care) on ethnic disparities in colorectal cancer screening, comparing Hispanics with non-Hispanics. METHODS: An interrupted time series quasi-experimental analysis was used to examine ethnic differences in colorectal cancer screening pre- and post-implementation of the Affordable Care Act (analysis performed in 2018). The study cohort included insured individuals aged 50-64 years who participated in the Medical Expenditure Panel Survey from 2007 through 2015 (n=44,343). RESULTS: During the pre-Affordable Care Act period, screening rates decreased annually for non-Hispanics by -0.38 per 100 adults per year (95% CI= -0.55, -0.22) but remained level for Hispanics (annual trend per 100 adults: 0.01, 95% CI= -0.34, 0.35). After cost sharing was eliminated in 2011, colorectal cancer screening rates increased for both Hispanics (by 1.29 per 100 adults, 95% CI=0.69, 1.89) and non-Hispanics (by 0.58 per 100 adults, 95% CI=0.18, 0.99). The difference in trend increases between Hispanics and non-Hispanics was not statistically significant (0.70%, 95% CI= -0.24, 1.64). CONCLUSIONS: These findings suggest that Affordable Care Act implementation resulted in increased colorectal cancer screening; however, the effect of the law was not significantly different between Hispanics and non-Hispanics. These results provide indications that more needs to be done to reduce racial/ethnic disparities in colorectal cancer screening.
Assuntos
População Negra/estatística & dados numéricos , Neoplasias Colorretais , Custo Compartilhado de Seguro , Detecção Precoce de Câncer/estatística & dados numéricos , Hispânico ou Latino/estatística & dados numéricos , População Branca/estatística & dados numéricos , Idoso , Neoplasias Colorretais/diagnóstico , Neoplasias Colorretais/etnologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Patient Protection and Affordable Care Act/economia , Patient Protection and Affordable Care Act/legislação & jurisprudência , Estudos Retrospectivos , Estados UnidosRESUMO
PURPOSE: Health-related quality of life (HRQOL) and pain are important supportive cancer care outcomes. The patient-provider relationship, a modifiable care experience, has been linked to healthcare outcomes; however, less is known about associations between patient-provider relationship and supportive care outcomes in cancer patients. We examined the role of multiple aspects of the patient-provider relationship in explaining patterns of HRQOL and pain among breast and lung cancer patients. METHODS: Our analysis included 283 breast and lung cancer patients from two cancer centers. Clinical data and survey data on patient sociodemographic factors, physical and mental HRQOL, pain, and patient-physician relationship (i.e., doctor's respectfulness, time spent with doctors, patient involvement in decision-making, satisfaction with care, and following doctor's advice/treatment plan) were collected at baseline and during treatment. We estimated adjusted modified Poisson regression models to assess associations between patient-physician relationship factors and physical and mental HRQOL and pain. RESULTS: Compared with patients reporting suboptimal respect from doctors, patients reporting optimal respect were less likely to report below average physical HRQOL (adjusted risk ratio (ARR), 0.73; 95%CI, 0.62-0.86), below average mental HRQOL (ARR, 0.71; 95%CI, 0.54-0.93), and moderate-to-severe pain (ARR, 0.53; 95%CI, 0.35-0.79). Patients reporting optimal involvement in care decision-making and patients who reported following their doctor's advice/treatment plan were less likely to report below average mental HRQOL than their respective counterparts (ARR, 0.64; 95%CI, 0.50-0.83; ARR, 0.65; 95%CI, 0.48-0.86). CONCLUSION: Multiple patient-physician relationship factors account for variations in HRQOL and pain in cancer patients. These findings provide insight into potential targets for improving the patient-provider relationship and supportive cancer care outcomes.
Assuntos
Neoplasias da Mama/psicologia , Dor do Câncer/psicologia , Neoplasias Pulmonares/psicologia , Relações Médico-Paciente , Qualidade de Vida/psicologia , Idoso , Dor do Câncer/terapia , Tomada de Decisões , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Respeito , Inquéritos e QuestionáriosRESUMO
PURPOSE: Little is known about racial variations in the financial impact of cancer care. Using data from a national survey of racially diverse patients with metastatic breast cancer, we examined racial/ethnic patterns in employment and cost-management (i.e., financial coping) behaviors. METHODS: We conducted an online survey of patients with metastatic breast cancer. Participants reported on socio-demographic characteristics, employment, and financial coping behaviors. We employed adjusted modified Poisson regressions to evaluate racial/ethnic differences in changes in work for pay and financial coping. RESULTS: Our analysis included 1052 respondents from 41 states, including Non-Hispanic Blacks (NHB, 9%), Hispanics (7%), Asians/Pacific Islanders/Native Hawaiians (API/NH, 10%), American Indians/Alaskan Natives (AI/AN, 8%), and Non-Hispanic Whites (NHW, 66%). In adjusted analyses comparing NHWs with patients of color, patients of color were more likely to take unpaid leave (NHB Adjusted Risk Ratio [ARR] = 2.27; 95% CI 1.54, 3.34), take paid leave (Hispanic ARR = 2.27; 95% CI 1.54, 1.29), stop work (AI/AN ARR = 1.22; 95% CI 1.05, 1.41), and reduce work hours (AI/AN ARR = 1.33; 95% CI 1.14, 1.57). Patients of color were more likely than NHWs to stop treatment (NHB ARR = 1.22; 95% CI 1.08, 1.39), borrow money from friends/family (Hispanic ARR = 1.75; 95% CI 1.25, 2.44), skip other medical bills (API/NH ARR = 2.02; 95% CI 1.54, 2.63), and skip non-medical bills (AI/AN ARR = 1.67 95% CI 1.06, 2.63). Non-Hispanic Whites more commonly reported using savings or skipping a vacation to help manage costs. CONCLUSIONS: Racial/ethnic differences exist in employment changes and financial coping among metastatic breast cancer patients, with patients of color experiencing worse consequences. Equity must be a guiding principle in strategies addressing financial burden during cancer care.
Assuntos
Neoplasias da Mama/economia , Neoplasias da Mama/etnologia , Emprego/estatística & dados numéricos , Adulto , Neoplasias da Mama/epidemiologia , Emprego/economia , Feminino , Gastos em Saúde , Humanos , Pessoa de Meia-Idade , Metástase Neoplásica , Licença Médica/economia , Licença Médica/estatística & dados numéricos , Estados Unidos/etnologiaRESUMO
OBJECTIVES: To identify patterns of access to and use or provision of palliative care services in medically underserved and vulnerable groups diagnosed with cancer. DATA SOURCES: Google Scholar, PubMed, MEDLINE, and Web of Science were searched to identify peer-reviewed studies that described palliative care in medically underserved or vulnerable populations diagnosed with cancer. CONCLUSION: Disparities in both access and referral to palliative care are evident in many underserved groups. There is evidence that some groups received poorer quality of such care. IMPLICATIONS FOR NURSING PRACTICE: Achieving health equity in access to and receipt of quality palliative care requires prioritization of this area in clinical practice and in research funding.
Assuntos
Status Econômico , Acessibilidade aos Serviços de Saúde/organização & administração , Enfermagem de Cuidados Paliativos na Terminalidade da Vida/organização & administração , Neoplasias/enfermagem , Enfermagem Oncológica/organização & administração , Cuidados Paliativos/organização & administração , Assistência Integral à Saúde/organização & administração , Humanos , Relações Enfermeiro-Paciente , Manejo da Dor/enfermagem , Qualidade da Assistência à Saúde , Fatores Socioeconômicos , Estados UnidosRESUMO
BACKGROUND: Community-based participatory research (CBPR) is a collaborative and equitable approach to research inquiry; however, the process of establishing and maintaining CBPR partnerships can be challenging. There is an ongoing need for innovative strategies that foster partnership development and long-term sustainability. In 2010, the University of North Carolina at Chapel Hill developed a CBPR charrette model to facilitate stakeholder engagement in translational research. OBJECTIVE: To describe how the Cancer Health Accountability for Managing Pain and Symptoms (CHAMPS) Study leveraged the CBPR charrette process to develop and strengthen its CBPR partnership and successfully implement research objectives. METHODS: Fourteen CHAMPS community, academic, and medical partners participated in the CBPR charrette. Two co-facilitators guided the charrette application process and in-person discussion of partnership strengths, needs, and challenges. Community experts (CEs) and academic experts (AEs) with extensive experience in CBPR and health disparities provided technical assistance and recommendations during the in-person charrette. CONCLUSIONS: Overall, the CHAMPS partnership benefited significantly from the charrette process. Specifically, the charrette process engendered greater transparency, accountability, and trust among CHAMPS partners by encouraging collective negotiation of project goals and implementation, roles and responsibilities, and compensation and communication structures. The process also allowed for the exploration of newly identified challenges and potential solutions with support from CEs and AEs. Furthermore, the charrette also functioned as a catalyst for capacity building among CHAMPS community, academic, and medical partners. Future studies should compare the impact of the CBPR charrette, relative to other approaches, on partnership development and process evaluation outcomes.
Assuntos
Dor do Câncer/terapia , Fortalecimento Institucional/organização & administração , Pesquisa Participativa Baseada na Comunidade/organização & administração , Relações Comunidade-Instituição , Neoplasias/terapia , Comportamento Cooperativo , Humanos , ConfiançaRESUMO
INTRODUCTION: As the cost of cancer treatment continues to rise, many patients are faced with significant emotional and financial burden. Oncology navigators guide patients through many aspects of care and therefore may be especially aware of patients' financial distress. Our objective was to explore navigators' perception of their patients' financial burden and their role in addressing financial needs. MATERIALS AND METHODS: We conducted a real-time online survey of attendees at an oncology navigators' association conference. Participants included lay navigators, oncology nurse navigators, community health workers, and social workers. Questions assessed perceived burden in their patient population and their role in helping navigate patients through financial resources. Answers to open-ended questions are reported using identified themes. RESULTS: Seventy-eight respondents participated in the survey, reporting that on average 75% of their patients experienced some degree of financial toxicity related to their cancer. Only 45% of navigators felt the majority of these patients were able to get some financial assistance, most often through assistance with medical costs (73%), subsidized insurance (36%), or non-medical expenses (31%). Commonly identified barriers for patients obtaining assistance included lack of resources (50%), lack of knowledge about resources (46%), and complex/duplicative paperwork (20%). CONCLUSION: Oncology navigators reported a high burden of financial toxicity among their patients but insufficient knowledge or resources to address this need. This study underscores the importance of improved training and coordination for addressing financial burden, and the need to address community and system-level barriers.
Assuntos
Custos de Cuidados de Saúde , Neoplasias/economia , Navegação de Pacientes , Humanos , Seguro Saúde , Medicaid , Oncologia , Neoplasias/psicologia , Inquéritos e Questionários , Estados UnidosRESUMO
PURPOSE: Racial disparities in cancer treatment-related symptom burden are well documented and linked to worse treatment outcomes. Yet, little is known about racial differences in patients' treatment-related symptom management experiences. Such understanding can help identify modifiable drivers of symptom burden inequities. As part of the Cancer Health Accountability for Managing Pain and Symptoms (CHAMPS) study, we examined racial differences in symptom management experiences among Black and White breast cancer survivors (BCS). METHODS: We conducted six focus groups (n = 3 Black BCS groups; n = 3 White BCS groups) with 22 stages I-IV BCS at two cancer centers. Focus groups were audio-recorded and transcribed verbatim. Based on key community-based participatory research principles, our community/academic/medical partner team facilitated focus groups and conducted qualitative analyses. RESULTS: All BCS described positive symptom management experiences, including clinician attentiveness to symptom concerns and clinician recommendations for pre-emptively managing symptoms. Black BCS commonly reported having to advocate for themselves to get information about treatment-related symptoms, and indicated dissatisfaction regarding clinicians' failure to disclose potential treatment-related symptoms or provide medications to address symptoms. White BCS often described dissatisfaction regarding inadequate information on symptom origins and clinicians' failure to offer reassurance. CONCLUSIONS: This study elucidates opportunities for future research aimed at improving equity for cancer treatment-related symptom management. For Black women, warnings about anticipated symptoms and treatment for ongoing symptoms were particular areas of concern. Routine symptom assessment for all women, as well as clinicians' management of symptoms for racially diverse cancer patients, need to be more thoroughly studied and addressed.
Assuntos
Neoplasias da Mama/etnologia , Grupos Focais/métodos , Idoso , Neoplasias da Mama/terapia , Feminino , Humanos , Fatores Raciais , Resultado do TratamentoRESUMO
PURPOSE: Adjuvant endocrine therapy (AET) utilization is linked to improved clinical outcomes among breast cancer survivors (BCS); yet, AET adherence rates remain suboptimal. Little is known about provider perspectives regarding barriers and facilitators to AET-related symptom management (SM). In this study, we examined provider perspectives on the barriers and facilitators to AET-related SM among BCS and opportunities for improvement. METHODS: We conducted three focus groups (FGs) with a multidisciplinary group of healthcare providers (n = 13) experienced in caring for BCS undergoing AET. We utilized semi-structured discussion guides to elicit provider perspectives on AET-related SM. FGs were audiotaped, transcribed, and analyzed using qualitative software to identify key themes. RESULTS: Providers described patient-, provider-, and system-level barriers and facilitators to AET-related SM. At the patient-level, barriers included competing demands, limited time/resources, and possible misattribution of some symptoms to AET, while family/social relationships and insurance emerged as important facilitators. Discomfort with SM, limited time, and challenges distinguishing AET-related symptoms from other conditions were key provider-level barriers. Provider-level facilitators included routine symptom documentation and strong provider relationships. Care fragmentation and complexity of the cancer care delivery system were described as system-level barriers; however, survivor clinics were endorsed by providers. CONCLUSIONS: Provider perspectives on AET-related SM can shed light on SM barriers and facilitators spanning multiple levels of the cancer care delivery system. Strategies for improving AET-related SM in BCS include increasing patients' knowledge and engagement in SM, equipping providers with efficient SM strategies, and improving coordination of symptom-related services through survivorship programs.
Assuntos
Neoplasias da Mama/tratamento farmacológico , Neoplasias da Mama/psicologia , Cuidados Paliativos/métodos , Atitude do Pessoal de Saúde , Neoplasias da Mama/fisiopatologia , Neoplasias da Mama Masculina/tratamento farmacológico , Neoplasias da Mama Masculina/fisiopatologia , Neoplasias da Mama Masculina/psicologia , Sobreviventes de Câncer , Quimioterapia Adjuvante/efeitos adversos , Feminino , Grupos Focais , Pessoal de Saúde/psicologia , Humanos , Masculino , Pessoa de Meia-Idade , Cooperação do PacienteRESUMO
PURPOSE: We aimed to identify subgroups of women with breast cancer who experience different health-related quality of life (HRQOL) patterns during active treatment and survivorship and determine characteristics associated with subgroup membership. METHODS: We used data from the third phase of the population-based Carolina Breast Cancer Study and included 2142 women diagnosed with breast cancer from 2008 to 2013. HRQOL was measured, on average, 5 and 25 months post diagnosis. Latent profile analysis was used to identify HRQOL latent profiles (LPs) at each time point. Latent transition analysis was used to determine probabilities of women transitioning profiles from 5 to 25 months. Multinomial logit models estimated adjusted odds ratios (aORs) and 95% confidence intervals for associations between patient characteristics and LP membership at each time point. RESULTS: We identified four HRQOL LPs at 5 and 25 months. LP1 had the poorest HRQOL and LP4 the best. Membership in the poorest profile at 5 months was associated with younger age aOR 0.95; 0.93-0.96, White race aOR 1.48; 1.25-1.65, being unmarried aOR 1.50; 1.28-1.65 and having public aOR 3.09; 1.96-4.83 or no insurance aOR 6.51; 2.12-20.10. At 25 months, Black race aOR 1.75; 1.18-1.82 was associated with the poorest profile membership. Black race and smoking were predictors of deteriorating to a worse profile from 5 to 25 months. CONCLUSIONS: Our results suggest patient-level characteristics including age at diagnosis and race may identify women at risk for experiencing poor HRQOL patterns. If women are identified and offered targeted HRQOL support, we may see improvements in long-term HRQOL and better breast cancer outcomes.
Assuntos
Neoplasias da Mama/psicologia , Qualidade de Vida/psicologia , Adulto , Idoso , Feminino , Humanos , Pessoa de Meia-IdadeRESUMO
PURPOSE: Endocrine therapy (ET) underuse puts women at increased risk for breast cancer (BC) recurrence. Our objective was to determine if health-related quality of life (HRQOL) subgroups were associated with underuse. METHODS: Data came from the third phase of the Carolina Breast Cancer Study. We included 1,599 women with hormone receptor-positive BC age 20 to 74 years. HRQOL was measured, on average, 5 months postdiagnosis. Subgroups were derived using latent profile (LP) analysis. Underuse was defined as not initiating or adhering to ET by 36 months postdiagnosis. Multivariable logistic regression models estimated adjusted odds ratios (ORs) between HRQOL LPs and underuse. The best HRQOL LP was the reference. Chemotherapy- and race-stratified models were estimated, separately. RESULTS: Initiation analyses included 953 women who had not begun ET by their 5-month survey. Of these, 154 never initiated ET. Adherence analyses included 1,114 ET initiators, of whom 211 were nonadherent. HRQOL was not significantly associated with noninitiation, except among nonchemotherapy users, with membership in the poorest LP associated with increased odds of noninitiation (adjusted OR, 5.5; 95% CI, 1.7 to 17.4). Membership in the poorest LPs was associated with nonadherence (LP1: adjusted OR, 2.2; 95% CI, 1.2 to 4.0 and LP2: adjusted OR,1.9; 95% CI, 1.1 to 3.6). Membership in the poorest LP was associated with nonadherence among nonchemotherapy users (adjusted OR, 2.1; 95% CI, 1.2 to 5.1). CONCLUSION: Our results suggest women with poor HRQOL during active treatment may be at increased risk for ET underuse. Focusing on HRQOL, a modifiable factor, may improve targeting of future interventions early in the BC continuum to improve ET initiation and adherence and prevent BC recurrence.
Assuntos
Neoplasias da Mama/epidemiologia , Mau Uso de Serviços de Saúde , Qualidade de Vida , Adulto , Idoso , Protocolos de Quimioterapia Combinada Antineoplásica , Neoplasias da Mama/tratamento farmacológico , Neoplasias da Mama/patologia , Terapia Combinada , Comorbidade , Feminino , Humanos , Pessoa de Meia-Idade , Estadiamento de Neoplasias , North Carolina/epidemiologia , Razão de Chances , Fatores de Risco , Adulto JovemRESUMO
PURPOSE: Providers' communication skills play a key role in encouraging breast cancer survivors to report symptoms and adhere to long-term treatments such as adjuvant endocrine therapy (AET). The purpose of this study was to examine provider perspectives on patient-provider communication regarding AET symptom management and to explore whether provider perspectives vary across the multi-disciplinary team of providers involved in survivorship care. METHODS: We conducted three one-hour focus groups with a multi-disciplinary group of health care providers including oncology specialists, primary care physicians, and non-physician providers experienced in caring for breast cancer survivors undergoing AET (n = 13). Themes were organized using Epstein and Street's (2007) Framework for Patient-Centered Communication in Cancer Care. RESULTS: The findings of this study suggest providers' communication behaviors including managing survivors' uncertainty, responding to survivors' emotions, exchanging information, and enabling self-management influences the quality of patient-provider communication about AET symptoms. Additionally, lack of systematic symptom assessment tools for AET requires providers to use discretion in determining which symptoms to discuss with survivors resulting in approaches that vary based on providers' discipline. CONCLUSION: There may be AET-specific provider communication skills and behaviors that promote effective patient-provider communication but additional research is needed to identify practices and policies that encourage these skills and behaviors among the many providers involved in survivorship care. Efforts are also needed to coordinate AET symptom assessment across providers, clarify providers' roles in symptom assessment, and determine best practices for AET symptom communication.