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BACKGROUND: One-third of people with cystic fibrosis (pwCF) are food insecure, with profound negative implications for their health. This qualitative study explored lived experiences with food insecurity among pwCF or their caregivers and summarized their perspectives on food insecurity screening in the cystic fibrosis (CF) programs where they receive care. METHODS: Semi-structured qualitative interviews were conducted with two groups: (1) adults with CF and (2) parents or caregivers of children with CF. PwCF or their caregivers with previously documented food insecurity were referred for participation by pediatric and adult CF programs across the United States. Interviews were recorded and transcribed, and data were coded and analyzed by two independent coders using a content-analysis approach with a constant comparative method to generate themes. RESULTS: A total of 26 participants from 22 CF programs were interviewed. The sample included 17 adults with CF and nine parents of children with CF. Participants were predominantly White (88%) and female (92%). Five overarching themes emerged: (1) food insecurity among CF patients and their families is onerous, (2) financial constraints imposed by the CF disease contribute to food insecurity, (3) federal and state programs provide limited food assistance, and other support is minimal, (4) shame and stigma engulf conversations around food insecurity with CF care teams, and (5) food insecurity screening in clinical settings is critical. CONCLUSIONS: Food insecurity among pwCF is invisible, but its consequences are dire. Assistance is limited, screening is inconsistent, and stigma is widespread. There is an urgent need to normalize food insecurity screening, standardize the screening process, and expand food assistance programs for pwCF.
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BACKGROUND: Substantial evidence supports therapeutic exercise for improving health and function in people with multiple sclerosis (MS). However, few studies have considered the patients' perspective. OBJECTIVE: This study explored perspectives of adults with MS following participation in a 3-month clinic- and home-based exercise rehabilitation program. METHODS: Twenty participants with MS were interviewed using a semi-structured interview guide on the design and implementation processes of the exercise programs as well as any perceived facilitators or barriers to exercise. Data analysis was conducted using a thematic analysis approach to generate themes from the transcribed interviews. RESULTS: Key facilitators of exercise for people with MS included perceived improvements in physical health and function, activity participation, and psychosocial health. Mismatched level of exercise with their stage of post-diagnosis and/or functional ability and limited human interaction emerged as barriers to exercise. CONCLUSIONS: Participation in the exercise program was a positive experience for people with MS. Despite the provision of a high level of adaptation and tailored exercise plan and delivery, self-directed exercise continued to present challenges for people with MS. Additionally, the importance of seeking cost-effective ways to maintain motivational support was implicit in participant responses. The findings provided an improved understanding of personal experiences and exercise perspectives that can inform future intervention strategies aimed at promoting sustained exercise participation.
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Pessoas com Deficiência , Esclerose Múltipla , Humanos , Adulto , Esclerose Múltipla/psicologia , Terapia por Exercício/psicologia , Exercício Físico/psicologia , Modalidades de Fisioterapia , Pesquisa QualitativaRESUMO
Disease stage at the time of diagnosis is the most important determinant of prognosis for lung cancer. Despite demonstrated effectiveness of lung cancer screening (LCS) in reducing lung cancer mortality, early detection continues to elude populations with the highest risk for lung cancer death. Consistent with the national rate, current screening rate in Alabama is dismal at 4.2%. While public awareness of LCS may be a likely cause, there are no studies that have thoroughly evaluated current knowledge of LCS within the Deep South. Therefore, we measured LCS knowledge before and after receiving education delivered by community health advisors (CHAs) among high-risk individuals living in medically underserved communities of Alabama and to determine impact of psychological, demographic, health status, and cognitive factors on rate of lung cancer screening participation. Participants were recruited from one urban county and six rural Black Belt counties (characterized by poverty, rurality, unemployment, low educational attainment, and disproportionate lack of access to health services). One hundred individuals (i) aged between 55 and 80 years; (ii) currently smoke or have quit within the past 15 years; and (iii) have at least a total of 30-pack-year smoking history were recruited. Knowledge scores to assess lung cancer knowledge were calculated. Paired t-test was used to assess pre- and post-knowledge score improvement. Screening for lung cancer was modeled as a function of predisposed factors (age, gender, insurance, education, fatalism, smoking status, and history of family lung cancer). Average age was 62.94 (SD = 6.28), mostly female (54%); mostly current smokers (53%). Most participants (80.85%) reported no family history of cancer. Fatalism was low, with a majority of the participants disagreeing that a cancer diagnosis is pre-destined (67.7%) and that there are no treatments for lung cancer (88.66%). Overall, lung cancer knowledge increased significantly from baseline of 4.64 (SD = 2.37) to 7.61 (SD = 2.26). Of the 100 participants, 23 underwent screening due to lack of access to primary care providers and reluctance of PCPs to provide referral to LCS. Sixty-five percent of those who were screened reported no family history of lung cancer. Regression analysis revealed no significant association between risk factors and the decision to get screened by participants. Our study demonstrates that while CHA delivered education initiatives increases lung cancer screening knowledge, there are significant structural barriers that prohibit effective utilization of LCS which needs to be addressed.
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Neoplasias Pulmonares , Humanos , Feminino , Pessoa de Meia-Idade , Idoso , Idoso de 80 Anos ou mais , Masculino , Neoplasias Pulmonares/diagnóstico , Neoplasias Pulmonares/prevenção & controle , Neoplasias Pulmonares/psicologia , Projetos Piloto , Detecção Precoce de Câncer , Saúde Pública , FumarRESUMO
Lung cancer is the leading cause of cancer mortality in the USA. In the rural Black Belt region of Alabama, high rates of lung cancer incidence and mortality coupled with disproportionate lack of access to health services stresses the need for navigating high risk and disproportionately affected groups towards successfully obtaining lung cancer screenings. We utilized our well-accepted Community Health Advisor (CHA) model for education and awareness. This study seeks to evaluate the results of the Alabama Lung Cancer Awareness, Screening, and Education (ALCASE) training on CHAs, program evaluation, and lessons learned. A total of 202 participants were eligible and enrolled for CHA training. One hundred thirty CHAs were included for the final analyses. Descriptive statistics were computed; differences in pre-test and post-test scores were compared across demographic characteristics of the participants using paired t-test/one-way ANOVA. Of the 130 CHAs, 46% were 65 years or older; 98% were African Americans, and 87% were female; 17% of participants were cancer survivors. The mean post-test scores were 2.2 points greater than mean pre-test scores, and the difference was significant (mean (SD): pre-test = 20.8 (2.8) versus post-test = 23 (2.2); p = 0.001). No notable difference in pre-test and post-test scores were observed by CHA's demographic characteristics except by their county of residence or work (p = 0.0019). We demonstrate the capability and value of successfully recruiting and training motivated community members to be able to serve educators to better reach medically underserved and historically excluded communities.
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Neoplasias Pulmonares , Saúde Pública , Humanos , Feminino , Masculino , Avaliação de Programas e Projetos de Saúde , Saúde Pública/educação , Currículo , Alabama/epidemiologia , Neoplasias Pulmonares/prevenção & controle , Agentes Comunitários de Saúde/educaçãoRESUMO
The COVID-19 pandemic has only further brought to light how racism, bias, and lack of equity can result in social injustice, morbidity, and mortality. A panel of four advanced practitioners convened at JADPRO Live Virtual 2021 to examine oncology advanced practitioners' capacity for enhancing equitable cancer care in the domains of care coordination and communication, clinical trials, and acknowledging and mitigating bias.
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PURPOSE: In general, participation rates in cancer clinical trials are very low. However, participation rates are especially low among the socially disadvantaged and racial and ethnic minority groups. These groups have been historically under-represented in cancer clinical trials. Although many patient-related barriers have been studied, institutional factors that are essential for building clinical research infrastructure around the clinical trial enterprise in academic medical centers have been underexplored. MATERIALS AND METHODS: We assessed perspectives of cancer center professional stakeholders on the institutional factors that can potentially influence racial and ethnic minority recruitment for cancer clinical trials. Ninety-one qualitative interviews were conducted at five US cancer centers among four stakeholder groups: cancer center leaders, principal investigators, referring clinicians, and research staff. Qualitative analyses examined response data focused on institutional factors related to minority recruitment for cancer clinical trials. RESULTS: Four prominent themes emerged regarding institutional barriers among clinical and research professionals. (1) There are no existing programs currently being used to recruit or retain minorities to clinical trials. (2) Institutional efforts are needed to increase trial participation and are not specific to potential minority participants. (3) Access to cancer clinical trials and navigation within an Academic Medical Center need to be simplified to better facilitate recruitment of minority patients. (4) Community outreach by cancer centers will increase clinical research awareness in the community. CONCLUSION: Our research highlights the need to address institutional barriers to improve the success of minority recruitment. To increase participation among minority populations, medical centers must address mutable institutional barriers such as setting specific minority recruitment goals for cancer clinical trials, ensuring that cancer clinical trials are accessible, especially to minority patients, and supporting sustained community outreach programs to increase clinical research awareness.
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Grupos Minoritários , Neoplasias , Etnicidade , Humanos , Neoplasias/terapia , Seleção de Pacientes , Projetos PilotoRESUMO
BACKGROUND: The simultaneous or intermittent use of alternative treatments and prescription medications for hypertension and type 2 diabetes mellitus can have adverse health effects. OBJECTIVES: To identify beliefs and practices associated with the use of alternative treatments for hypertension and type 2 diabetes mellitus among patients. METHODS: A mixed-methods study including an investigator-administered survey and focus group discussion sessions using convenience sampling was conducted among patients aged ≥18 years during May to August 2018. Descriptive statistics were used to describe and compare demographic characteristics among groups of survey participants using JMP Pro 14.0. Thematic analysis was conducted to analyze the qualitative data using NVivo. RESULTS: Most study participants (87-90%) were on prescription medication for their condition. Of survey participants, 69% reported taking their medication as prescribed and 70% felt that prescription medicine was controlling their condition. Almost all participants (98%) reported using alternative treatments, mainly herbal medications, and 73-80% felt that herbal medicines controlled their conditions. One-third believed that herbal medicines are the most effective form of treatment and should always be used instead of prescription medication. However, most participants (85%) did not believe that prescription and herbal treatments should be used simultaneously. Most (76-90%) did not discuss herbal treatments with their healthcare providers. Four themes emerged from the focus group sessions: 1) Simultaneous use of herbal and prescription medicine was perceived to be harmful, 2) Patients did not divulge their use of herbal medicine to healthcare providers, 3) Alternative medicines were perceived to be highly effective, and 4) Religiosity and family elders played key roles in herbal use. CONCLUSIONS: This study provides useful insights into perceptions and use of alternative treatments by patients that can be used by healthcare providers in developing appropriate interventions to encourage proper use of prescription medicines and alternative medicines resulting in improved management of these chronic diseases.
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Diabetes Mellitus Tipo 2/terapia , Conhecimentos, Atitudes e Prática em Saúde/etnologia , Hipertensão/terapia , Adulto , Idoso , Idoso de 80 Anos ou mais , Terapias Complementares/métodos , Terapias Complementares/estatística & dados numéricos , Feminino , Grupos Focais , Medicina Herbária/estatística & dados numéricos , Medicina Herbária/tendências , Humanos , Jamaica/epidemiologia , Masculino , Adesão à Medicação , Pessoa de Meia-Idade , Fitoterapia/estatística & dados numéricos , Plantas Medicinais , Medicamentos sob Prescrição/uso terapêutico , Inquéritos e QuestionáriosRESUMO
OBJECTIVE: Shared decision-making (SDM) occurs when physicians and patients jointly select treatment that aligns with patient care goals. Incorporating patient preferences into the decision-making process is integral to successful decision-making. This study explores factors influencing treatment selection in older patients with early-stage breast cancer (EBC). METHODS: This qualitative study included women age ≥65 years with EBC. To understand role preferences, patients completed the Control Preferences Scale. Semi-structured interviews were conducted to explore patients' treatment selection rationale. Interview transcripts were analyzed using a constant comparative method identifying major themes related to treatment selection. RESULTS: Of 33 patients, the majority (48%) desired shared responsibility in treatment decision-making. Interviews revealed that EBC treatment incorporated three domains: Intrinsic and extrinsic influences, clinical characteristics, and patient values. Patients considered 19 treatment selection themes, the most prioritized including physician trust and physical side effects. CONCLUSIONS: Because preferences and approach to treatment selection varied widely in this sample of older, EBC patients, more research is needed to determine best practices for preference incorporation to optimize SDM at the time of treatment decisions.
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Neoplasias da Mama/terapia , Tomada de Decisão Compartilhada , Preferência do Paciente/psicologia , Relações Médico-Paciente , Idoso , Neoplasias da Mama/patologia , Feminino , Humanos , Estadiamento de Neoplasias , Planejamento de Assistência ao Paciente , Pesquisa QualitativaRESUMO
BACKGROUND: Little data exist on perceptions of guideline-based care in oncology. This qualitative analysis describes patients' and oncologists' views on the value of guideline-based care as well as discussing guidelines when making metastatic breast cancer (MBC) treatment decisions. PATIENTS AND METHODS: In-person interviews completed with MBC patients and community oncologists and focus groups with academic oncologists were audio-recorded and transcribed. Two coders utilized a content analysis approach to analyze transcripts independently using NVivo. Major themes and exemplary quotes were extracted. RESULTS: Participants included 20 MBC patients, 6 community oncologists, and 5 academic oncologists. Most patients were unfamiliar with the term "guidelines." All patients desired to know if they were receiving guideline-discordant treatment but were often willing to accept this treatment. Five themes emerged explaining this including trusting the oncologist, relying on the oncologist's experiences, being informed of rationale for deviation, personalized treatment, and openness to novel therapies. Physician discussions regarding the importance of guidelines revealed three themes: consistency with scientific evidence, insurance coverage, and limiting unusual practices. Oncologists identified three major limitations in using guidelines: lack of consensus, inability to "think outside the box" to personalize treatment, and lack of guideline timeliness. Although some oncologists discussed guidelines, it was often not considered a priority. CONCLUSIONS: Patients expressed a desire to know whether they were receiving guideline-based care but were amenable to guideline-discordant treatment if the rationale was made clear. Providers' preference to limit discussions of guidelines is discordant with patients' desire for this information and may limit shared decision-making.
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Neoplasias da Mama , Neoplasias , Oncologistas , Neoplasias da Mama/terapia , Tomada de Decisões , Tomada de Decisão Compartilhada , Feminino , Humanos , Oncologia , Relações Médico-PacienteRESUMO
OBJECTIVE: Tobacco smoke exposure has negative impacts on the lung health of children with cystic fibrosis (CF), yet evidence-based strategies for smoking cessation have not been tested with or tailored to CF caregivers. This qualitative study identified barriers and facilitators of smoking cessation in this population and outlined potential interventional approaches. METHODS: We conducted semi-structured interviews with CF familial caregivers who were current or former smokers, and with members of the CF care team. We asked about experiences, practices, and prerequisites for a successful program. Interviews were recorded, transcribed verbatim, and coded by two investigators. Analysis used a thematic approach guided by the PRECEDE model, which identifies predisposing (intrapersonal), reinforcing (interpersonal), and enabling (structural) factors relevant to health behaviors and programs. RESULTS: Seventeen interviews were conducted-eight with familial caregivers and nine with CF team members. Whereas caregivers provided greater insight into internal difficulties and motivators to quit smoking, clinicians offered more extensive input on barriers and solutions related to the clinical environment. Based on study recommendations, a successful tobacco cessation program should include (a) family education about the harms of smoke exposure for children with CF; (b) screening for exposure, ideally with biochemical verification; (c) access to trained tobacco counselors; (d) affordable pharmacotherapy; and (e) outpatient follow-up of those undergoing tobacco treatment. CONCLUSION: This qualitative study revealed intrapersonal, interpersonal, and structural barriers to eliminating tobacco smoke exposure in children with CF, outlined opportunities to address these barriers, and made recommendations for a comprehensive tobacco cessation strategy.
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Cuidadores/psicologia , Fibrose Cística , Médicos/psicologia , Abandono do Hábito de Fumar/psicologia , Poluição por Fumaça de Tabaco , Fumar Tabaco/psicologia , Adulto , Criança , Humanos , Exposição por InalaçãoRESUMO
BACKGROUND: In recent years, extensive attention has been paid to the possibility that bias among health care professionals contributes to health disparities. In its 2003 report, the Institute of Medicine concluded that bias against racial minorities may affect communication or care offered. However, to the authors' knowledge, the role of bias within the context of recruitment of racial and ethnic minorities to cancer clinical trials has not been explored to date. Therefore, the authors assessed the experiences of clinical and research personnel related to factors influencing the recruitment of racial and ethnic minorities for cancer clinical trials. METHODS: A total of 91 qualitative interviews were conducted at 5 US cancer centers among 4 stakeholder groups: 1) cancer center leaders; 2) principal investigators; 3) referring clinicians; and 4) research staff. Data analysis was conducted using a content analysis approach to generate themes from the transcribed interviews. RESULTS: Five prominent themes emerged: 1) recruitment interactions with potential minority participants were perceived to be challenging; 2) potential minority participants were not perceived to be ideal study candidates; 3) a combination of clinic-level barriers and negative perceptions of minority study participants led to providers withholding clinical trial opportunities from potential minority participants; 4) when clinical trial recruitment practices were tailored to minority patients, addressing research misconceptions to build trust was a common strategy; 5) for some respondents, race was perceived as irrelevant when screening and recruiting potential minority participants for clinical trials. CONCLUSIONS: Not only did some respondents view racial and ethnic minorities as less promising participants, some respondents reported withholding trial opportunities from minorities based on these perceptions. Some providers endorsed using tailored recruitment strategies whereas others eschewed race as a factor in trial recruitment. The presence of bias and stereotyping among clinical and research professionals recruiting for cancer clinical trials should be considered when designing interventions to increase minority enrollment.
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Viés , Ensaios Clínicos como Assunto , Pessoal de Saúde , Grupos Minoritários , Neoplasias/terapia , Pesquisadores , Estereotipagem , Feminino , Humanos , Masculino , Pessoa de Meia-IdadeRESUMO
Context: Increasing emphasis on patient-centered care has led to highlighted importance of shared decision making, which better aligns medical decisions with patient care preferences. Effective shared decision making in metastatic breast cancer (MBC) treatment requires prognostic understanding, without which patients may receive treatment inconsistent with personal preferences. Objectives: To assess MBC patient and provider perspectives on the role of prognostic information in treatment decision making. Methods: We conducted semi-structured interviews with MBC patients and community oncologists and separate focus groups involving lay navigators, nurses, and academic oncologists. Qualitative analysis utilized a content analysis approach that included a constant comparative method to generate themes. Results: Of 20 interviewed patients with MBC, 30% were African American. Academic oncologists were mostly women (60%), community oncologists were all Caucasian, and nurses were all women and 28% African American. Lay navigators were all African American and predominately women (86%). Five emergent themes were identified. (1) Most patients wanted prognostic information but differed in when they wanted to have this conversation, (2) Emotional distress and discomfort was a critical reason for not discussing prognosis, (3) Religious beliefs shaped preferences for prognostic information, (4) Health care professionals differed on prognostic information delivery timing, and (5) Providers acknowledged that an individualized approach taking into account patient values and preferences would be beneficial. Conclusion: Most MBC patients wanted prognostic information, yet varied in when they wanted this information. Understanding why patients want limited or unrestricted prognostic information can inform oncologists' efforts toward shared decision making.
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Neoplasias da Mama , Oncologistas , Tomada de Decisões , Tomada de Decisão Compartilhada , Feminino , Humanos , PrognósticoRESUMO
An ideal model for decision making in cancer is shared decision-making (SDM). Primary facilitators in this model are information-seeking about treatment options and patient-physician trust. Previous studies have investigated the role of each of these parameters individually. However, little is known about their convergent role in treatment decision-making. Therefore, we explored perspectives of metastatic breast cancer (MBC) patients and healthcare professionals about the influence of health information-seeking and physician trust in the SDM process. Qualitative interviews with 20 MBC patients and 6 community oncologists, as well as 3 separate focus groups involving lay navigators, nurses, and academic oncologists, were conducted, recorded, and transcribed. Qualitative data analysis employed a content analysis approach, which included a constant comparative method to generate themes from the transcribed textual data. Five emergent themes were identified (1) physicians considered themselves as the patients' primary source of treatment information; (2) patients trusted their physician's treatment recommendations; (3) patients varied in their approach to seeking further health information regarding the discussed treatment options (e.g., internet websites, family and friends, support groups); (4) other healthcare professionals were cognizant of their fundamental role in facilitating further information-seeking; and (5) patient and physician discordant perspectives on shared decision making were present. Patient procurement of treatment information and the capacity to use it effectively in conjunction with patient trust in physicians play an important role in the shared decision-making process.
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Atitude do Pessoal de Saúde , Neoplasias da Mama/terapia , Tomada de Decisão Compartilhada , Técnicas de Apoio para a Decisão , Oncologistas/psicologia , Participação do Paciente , Relações Médico-Paciente , Adulto , Idoso , Medicina Baseada em Evidências , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Inquéritos e QuestionáriosRESUMO
PURPOSE: Adherence to pulmonary rehabilitation (PR) is low. This qualitative study used the PRECEDE model to identify predisposing (intrapersonal), reinforcing (interpersonal), and enabling (structural) factors acting as barriers or facilitators of adherence to PR, and elicit recommendations for solutions from patients with chronic obstructive pulmonary disease (COPD). METHODS: Focus groups with COPD patients who had attended PR in the past year were conducted. Sessions were recorded, transcribed verbatim, and coded independently by 2 coders, who then jointly decided on the final coding scheme. Data were summarized across groups, and analysis was used a thematic approach with constant comparative method to generate categories. RESULTS: Five focus groups with 24 participants each were conducted. Participants (mean age 62 yr) were 54% male, and 67% black. More than half had annual income less than $20 000, 17% were current smokers, and 54% had low adherence (less than 35% of prescribed PR sessions). The most prominent barriers included physical ailments and lack of motivation (intrapersonal), no support system (interpersonal), transportation difficulties, and financial burden (structural). The most prominent facilitators included health improvement, personal determination (intrapersonal), support from peers, family, and friends (interpersonal), and program features such as friendly staff and educational component of sessions (structural). Proposed solutions included incentives to maintain motivation, tobacco cessation support (intrapersonal), educating the entire family (interpersonal), transportation assistance, flexible program scheduling, and financial assistance (structural). CONCLUSION: Health limitations, social support, transportation and financial difficulties, and program features impact ability of patients to attend PR. Interventions addressing these interpersonal, intrapersonal, and structural barriers are needed to facilitate adherence to PR.
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Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Cooperação do Paciente/psicologia , Cooperação do Paciente/estatística & dados numéricos , Doença Pulmonar Obstrutiva Crônica/psicologia , Doença Pulmonar Obstrutiva Crônica/reabilitação , Exercício Físico/psicologia , Feminino , Grupos Focais , Humanos , Masculino , Pessoa de Meia-Idade , Motivação , Grupo Associado , Pesquisa Qualitativa , Apoio SocialRESUMO
BACKGROUND: Metastatic breast cancer (MBC) is an ideal environment for shared decision-making because of the large number of guideline-based treatment options with similar efficacy but different toxicity profiles. This qualitative analysis describes patient and provider factors that influence decision-making in treatment of MBC. MATERIALS AND METHODS: Patients and community oncologists completed in-person interviews. Academic medical oncologists participated in focus groups. Interviews and focus groups were audio-recorded, transcribed, and analyzed using NVivo. Using an a priori model based on the Ottawa Framework, two independent coders analyzed transcripts using a constant comparative method. Major themes and exemplary quotes were extracted. RESULTS: Participants included 20 patients with MBC, 6 community oncologists, and 5 academic oncologists. Analysis of patient interviews revealed a decision-making process characterized by the following themes: decision-making style, contextual factors, and preferences. Patient preference subthemes include treatment efficacy, physical side effects of treatment, emotional side effects of treatment, cognitive side effects of treatment, cost and financial toxicity, salience of cutting-edge treatment options (clinical trial or newly approved medication), treatment logistics and convenience, personal and family responsibilities, treatment impact on daily activities, participation in self-defining endeavors, attending important events, and pursuing important goals. Physician decisions emphasized drug-specific characteristics (treatment efficacy, side effects, cost) rather than patient preferences, which might impact treatment choice. CONCLUSION: Although both patients with MBC and oncologists considered treatment characteristics when making decisions, patients' considerations were broader than oncologists', incorporating contextual factors such as the innovative value of the treatment and life responsibilities. Differences in perspectives between patients and oncologists suggests the value of tools to facilitate systematic communication of preferences in the setting of MBC. IMPLICATIONS FOR PRACTICE: Both patients with metastatic breast cancer (MBC) and oncologists emphasized importance of efficacy and physical side effects when making treatment decisions. However, other patient considerations for making treatment decisions were broader, incorporating contextual factors such as the logistics of treatments, personal and family responsibilities, and ability to attend important events. Furthermore, individual patients varied substantially in priorities that they want considered in treatment decisions. Differences in perspectives between patients and oncologists suggest the value of tools to facilitate systematic elicitation of preferences and communication of those preferences to oncologists for integration into decision-making in MBC.
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Neoplasias da Mama/complicações , Oncologistas/normas , Adulto , Idoso , Tomada de Decisões , Feminino , Humanos , Pessoa de Meia-Idade , Metástase NeoplásicaRESUMO
The study of disparities in minority recruitment to cancer clinical trials has focused primarily on inquiries among minority patient populations. However, clinical trial recruitment is complex and requires a broader appreciation of the multiple factors that influence minority participation. One area that has received little attention is minority recruitment training for professionals who assume various roles in the clinical trial recruitment process. Therefore, we assessed the perspectives of cancer center clinical and research personnel on their training and education needs toward minority recruitment for cancer clinical trials. Ninety-one qualitative interviews were conducted at five U.S. cancer centers among four stakeholder groups: cancer center leaders, principal investigators, referring clinicians, and research staff. Interviews were recorded and transcribed. Qualitative analyses focused on response data related to training for minority recruitment for cancer clinical trials. Four prominent themes were identified: (1) Research personnel are not currently being trained to focus on recruitment and retention of minority populations; (2) Training for minority recruitment and retention provides for a specific focus on factors influencing minority research participation; (3) Training on cultural awareness may help to bridge cultural gaps between potential minority participants and research professionals; (4) Views differ regarding the importance of research personnel training designed to focus on recruitment of minority populations. There is a lack of systematic training for minority recruitment. Many stakeholders acknowledged the benefits of minority recruitment training and welcomed training that focuses on increasing cultural awareness to increase the participation of minorities in cancer clinical trials.
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Ensaios Clínicos como Assunto/normas , Pessoal de Saúde/educação , Capacitação em Serviço/normas , Grupos Minoritários/estatística & dados numéricos , Avaliação das Necessidades , Seleção de Pacientes , Pesquisadores/educação , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Pessoal de Saúde/psicologia , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/terapia , Projetos Piloto , Melhoria de Qualidade , Projetos de Pesquisa , Pesquisadores/psicologia , Inquéritos e QuestionáriosRESUMO
CONTEXT: Respecting Choices is an evidence-based model of facilitating advance care planning (ACP) conversations between health-care professionals and patients. However, the effectiveness of whether lay patient navigators can successfully initiate Respecting Choices ACP conversations is unknown. As part of a large demonstration project (Patient Care Connect [PCC]), a cohort of lay patient navigators underwent Respecting Choices training and were tasked to initiate ACP conversations with Medicare beneficiaries diagnosed with cancer. OBJECTIVES: This article explores PCC lay navigators' perceived barriers and facilitators in initiating Respecting Choices ACP conversations with older patients with cancer in order to inform implementation enhancements to lay navigator-facilitated ACP. METHODS: Twenty-six lay navigators from 11 PCC cancer centers in 4 states (Alabama, George, Tennessee, and Florida) completed in-depth, one-on-one semistructured interviews between June 2015 and August 2015. Data were analyzed using a thematic analysis approach. RESULTS: This evaluation identifies 3 levels-patient, lay navigator, and organizational factors in addition to training needs that influence ACP implementation. Key facilitators included physician buy-in, patient readiness, and navigators' prior experience with end-of-life decision-making. Lay navigators' perceived challenges to initiating ACP conversations included timing of the conversation and social and personal taboos about discussing dying. CONCLUSION: Our results suggest that further training and health system support are needed for lay navigators playing a vital role in improving the implementation of ACP among older patients with cancer. The lived expertise of lay navigators along with flexible longitudinal relationships with patients and caregivers may uniquely position this workforce to promote ACP.