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BACKGROUND: Prior research demonstrates that nearly all (95 %) people with lung cancer (PwLC) report stigma, and approximately half (48 %) PwLC experience stigma during clinical encounters with oncology care providers (OCPs). When stigma is experienced in a medical context, it can have undesirable consequences including patients' delaying and underreporting of symptoms, misreporting of smoking behavior, and avoiding help-seeking such as psychosocial support and cessation counseling. Multi-level interventions are needed to prevent and mitigate lung cancer stigma. One promising intervention for reducing patient perception and experience of stigma is to train OCPs in responding empathically to patient emotions and promoting empathic communication within clinical encounters. METHODS: This paper describes the study protocol for a cluster randomized trial comparing Usual Care (waitlist control group) with Empathic Communication Skills (ECS) training (intervention group). For this study, we will recruit 16 community oncology practice sites, 9-11 OCPs per site, and 6 PwLCs per OCP. RESULTS: The goal of this trial is to investigate the effect of the ECS training on (a) OCP primary outcomes (communication and empathic skill uptake) and secondary outcomes (ECS training appraisal - relevance, novelty, clarity; self-efficacy, attitude towards communication with patients); and (b) patient-reported primary outcomes (lung cancer stigma), and secondary outcomes (perceived clinician empathy, satisfaction with OCP communication, psychological distress, social isolation, and appraisal of care). CONCLUSION: Findings from this trial will advance understanding of the effectiveness of the ECS training intervention and inform future provider-level training interventions that may reduce lung cancer stigma and improve cancer care delivery. CLINICALTRIALS: govIdentifier: NCT05456841.
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Importance: Undertreated cancer pain is a major public health concern among older adults in rural communities. Interventions to improve pain management among this vulnerable population are needed. Objective: To test the feasibility, acceptability, and changes in pain outcomes from exposure to an adapted intervention, Cancer Health Empowerment for Living without Pain (CA-HELP), to improve patients' communication about pain to their clinicians. Design, Setting, and Participants: Older adults with cancer (aged ≥65 years) who were residing in a noninstitutional rural setting and receiving outpatient care at a rural-based clinic in Tennessee were enrolled in the study, in which everyone received the intervention, in May 2022. All patients were given assessments at baseline and 1 week after intervention. Mean score differences were analyzed using 1-tailed paired sample t tests (α = .05). Data were analyzed in June 2022. Exposure: The adapted version of CA-HELP included an 18-page patient-facing workbook and a 30-minute telephone coaching call with a registered nurse to coach patients on pain education and communication techniques to discuss pain with their medical team. Main Outcomes and Measures: Feasibility was examined through accrual and completion rates. Acceptability was measured by helpfulness, difficulty, and satisfaction with the intervention. Changes in outcomes were measured using mean score differences from pre-post assessments of pain self-management, self-efficacy for communicating with clinicians about pain, patient-reported pain, and misconceptions about pain. Results: Among the 30 total participants, the mean (SD) age was 73.0 (5.1) years; 17 participants (56.7%) were female, 5 (16.7%) were Black or African American, 30 (100%) were non-Hispanic or non-Latino, 24 (80.0%) were White, 16 (53.3%) had less than a high school education, and 15 (50.0%) reported income less than $21â¯000 per year. Based on accrual and completion rates of 100%, this intervention was highly feasible. Fidelity rates for delivering intervention components (100%) and communication competence (27 participants [90%]) were also high. Regarding acceptability, all patients rated the intervention as helpful, with the majority (24 participants [80%]) rating it as "very helpful." Most patients rated the intervention as "not at all difficult" (27 participants [90%]), enjoyed participating (21 participants [70%]), and reported being "very satisfied" (25 participants [83.3%]). Pre-post changes in outcomes suggested significant improvements in pain self-management and self-efficacy for communicating with clinicians about pain, as well as significant reductions in patient-reported pain and pain misconceptions. Conclusions and Relevance: In this case-series study of CA-HELP, results suggested the adapted version of CA-HELP was feasible and acceptable and showed changes in pain-related outcome measures among older adults with cancer in a rural setting.
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Neoplasias , Manejo del Dolor , Población Rural , Automanejo , Humanos , Anciano , Femenino , Masculino , Automanejo/métodos , Población Rural/estadística & datos numéricos , Manejo del Dolor/métodos , Neoplasias/complicaciones , Neoplasias/psicología , Neoplasias/terapia , Dolor en Cáncer/terapia , Dolor en Cáncer/psicología , Tennessee , Anciano de 80 o más Años , Estudios de Factibilidad , Educación del Paciente como Asunto/métodosRESUMEN
Importance: Home health aides and attendants (HHAs) provide essential care to older adults and those with chronic conditions in the home. However, some HHAs struggle with poor mood and stress, which may have been exacerbated by the COVID-19 pandemic. Objective: To elicit HHAs' perspectives toward mental health and well-being, including how their job influences both and how to better support the workforce in the future. Design, Setting, and Participants: For this qualitative study, focus groups and interviews with HHAs were facilitated in English and Spanish from August 17, 2022, to February 9, 2023, in partnership with the 1199SEIU Training and Employment Fund, a benefit fund of the 1199SEIU United Healthcare Workers East and the largest health care union in the US. Included were HHAs at risk for poor mental health and well-being, which were defined as having at least mild or more symptoms on either the 8-item Personal Health Questionnaire depression scale, the 4-item Cohen Perceived Stress Scale, or the University of California, Los Angeles Loneliness Scale. Exposure: Mental health and well-being of HHAs. Main Outcomes and Measures: Focus groups and interviews were audio recorded, professionally transcribed, and translated. A thematic analysis was performed that was informed by Pender's Health Promotion Model and the National Institute for Occupational Safety and Health's Total Worker Health model. Results: A total of 28 HHAs from 14 different agencies participated (mean [SD] age, 54.3 [10.8] years; 26 female [93%]). Seventeen participants (61%) spoke Spanish at home. Five key themes emerged: (1) HHAs' attitudes toward mental health and well-being were influenced by a variety of personal and cultural factors; (2) HHAs' relationships with their patients impacted their mood in both positive and negative ways; (3) structural and organizational aspects of the job, alongside the COVID-19 pandemic, impacted HHAs' mood and stress levels; (4) HHAs used a variety of strategies to cope with their emotions; and (5) HHAs were eager for interventions that can improve their mood, particularly those that bring them closer to their colleagues. Conclusions and Relevance: These findings suggest that HHAs' mental health and well-being may be influenced by both personal and occupational factors. Interventions and policies to better support their emotional well-being on the job are warranted.
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COVID-19 , Grupos Focales , Auxiliares de Salud a Domicilio , Salud Mental , Investigación Cualitativa , SARS-CoV-2 , Humanos , Femenino , COVID-19/psicología , COVID-19/epidemiología , Masculino , Adulto , Persona de Mediana Edad , Auxiliares de Salud a Domicilio/psicología , Pandemias , Estrés Psicológico/psicología , Estados Unidos , Depresión/psicologíaRESUMEN
OBJECTIVE: Most individuals with Friedreich ataxia (FRDA) have homozygous GAA triplet repeat expansions in the FXN gene, correlating with a typical phenotype of ataxia and cardiomyopathy. A minority are compound heterozygotes carrying a GAA expansion on one allele and a mutation on the other. The study aim was to examine phenotypic variation among compound heterozygotes. METHODS: Data on FXN mutations were obtained from the Friedreich Ataxia Clinical Outcome Measures Study (FA-COMS). We compared clinical features in a single-site FA-COMS cohort of 51 compound heterozygous and 358 homozygous patients, including quantitative measures of cardiac, neurologic, and visual disease progression. RESULTS: Non-GAA repeat mutations were associated with reduced cardiac disease, and patients with minimal/no function mutations otherwise had a typical FRDA phenotype but with significantly more severe progression. The partial function mutation group was characterized by relative sparing of bulbar and upper limb function, as well as particularly low cardiac involvement. Other clinical features in this group, including optic atrophy and diabetes mellitus, varied widely depending on the specific type of partial function mutation. INTERPRETATION: These data support that the typical FRDA phenotype is driven by frataxin deficiency, especially severe in compound heterozygotes with minimal/no function mutations, whereas the heterogeneous presentations of those with partial function mutations may indicate other contributing factors to FRDA pathogenesis.
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Frataxina , Ataxia de Friedreich , Heterocigoto , Fenotipo , Adolescente , Adulto , Niño , Femenino , Humanos , Masculino , Persona de Mediana Edad , Adulto Joven , Estudios de Cohortes , Ataxia de Friedreich/genética , Ataxia de Friedreich/fisiopatología , Mutación , Expansión de Repetición de Trinucleótido/genéticaRESUMEN
PURPOSE: The objective of this study was to investigate the relationship among hopelessness, anxiety, and depression, with spiritual well-being in patients and family caregivers. METHODS: A cross-sectional survey was administered to patients (n = 57) and caregivers (n = 57) that incorporated assessments that measured spiritual well-being, depression, anxiety, hopelessness, quality of life, family relationship, burden, fatalism, religiosity, and distress. Logistic regression and cross-tabulation analyses were conducted to examine the relationship between hopelessness, anxiety, and depression, with spiritual well-being. Logistic regression was used to quantify the impact of spiritual well-being on anxiety, depression, and hopelessness. Additionally, cross-tabulations with chi-square tests were conducted to explore associations between severity of hopelessness and severity of anxiety and depression. RESULTS: Logistic regression analyses showed negative associations between spiritual well-being and mental health outcomes, although not all findings were statistically significant. Among caregivers, a significant negative relationship was observed for depression (B = - 0.161, p = 0.022). Hopelessness also exhibited a negative association with spiritual well-being among caregivers (B = - 0.099, p = 0.054) and patients (B = - .152, p = 0.038). Cross-tabulations highlighted significant associations in the severity of hopelessness symptoms with anxiety and depression levels among caregivers (p < .001). CONCLUSION: Results reveal a relationship among psychosocial symptoms among Latino patient-caregivers coping with cancer. By emphasizing spiritual well-being, hopelessness, and anxiety and involving family patients and caregivers in the treatment process as a unit of care. Also, it indicates the need to develop culturally tailored interventions that aim to provide valuable assistance to Latino patients and caregivers coping with cancer.
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Cuidadores , Neoplasias , Humanos , Estudios Transversales , Calidad de Vida , Habilidades de Afrontamiento , Hispánicos o LatinosRESUMEN
OBJECTIVES: Accurate prognostic understanding among patients with advanced cancer and their caregivers is associated with greater engagement in advance care planning (ACP) and receipt of goal-concordant care. Poor prognostic understanding is more prevalent among racial and ethnic minority patients. The purpose of this study was to examine the feasibility, acceptability, and impact of a patient-caregiver communication-based intervention to improve prognostic understanding, engagement in ACP, and completion of advance directives among a racially and ethnically diverse, urban sample of patients and their caregivers. METHODS: Patients with advanced cancer and their caregivers (n = 22 dyads) completed assessments of prognostic understanding, engagement in ACP, and completion of advance directives at baseline and post-intervention, Talking About Cancer (TAC). TAC is a 7-session intervention delivered remotely by licensed social workers that includes distress management and communication skills, review of prognosis, and information on ACP. RESULTS: TAC met a priori benchmarks for feasibility, acceptability, and fidelity. Prognostic understanding and engagement in ACP did not change over time. However, patients showed increases in completion of advance directives. SIGNIFICANCE OF RESULTS: TAC was feasible, acceptable, and delivered with high fidelity. Involvement of caregivers in TAC may provide added layers of support to patients facing advanced cancer diagnoses, especially among racial and ethnic minorities. Trends indicated greater completion of advance directives but not in prognostic understanding or engagement in ACP. Future research is needed to optimize the intervention to improve acceptability, tailor to diverse patient populations, and examine the efficacy of TAC in a randomized controlled trial.
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Planificación Anticipada de Atención , Neoplasias , Humanos , Cuidadores , Proyectos Piloto , Pronóstico , Etnicidad , Grupos Minoritarios , Neoplasias/complicaciones , Neoplasias/terapia , ComunicaciónRESUMEN
Objectives: Most prior advance care planning (ACP) interventions lack integration of the social context of patients' ACP process, which patients indicate is critically important. The current study developed the Planning Advance Care Together (PACT) website to foster inclusion of loved ones in the ACP process. Methods: To provide feedback about the PACT website, patients with advanced cancer (N = 11), their caregivers (N = 11), and experts (N = 10) participated in semi-structured interviews. Patients and caregivers also completed standardized ratings of acceptability and usability. Results: Overall, patient (n = 11) and caregiver (n = 11) ratings of acceptability and usability of the website exceeded benchmark cut-offs (≥24 on the Acceptability E-Scale and ≥ 68 on the System Usability Scale). Patients, caregivers, and experts liked the topic of ACP but felt that it could be emotionally challenging. They recommended focusing more on planning and less on end of life. They appreciated being able to include loved ones and recommended adding resources for caregivers. Conclusions: Study findings support the preliminary usability and acceptability of the PACT website. Findings will be used to inform a modified prototype of the PACT website that is interactive and ready for field testing with patients with advanced cancer and their loved ones. Innovation: We utilized a novel application of the shared mind framework to support patients with advanced cancer in engaging their loved ones in the ACP process.
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PURPOSE: Despite known benefits of planning for end-of-life, no digital tool exists to help patients with advanced cancer and their loved ones plan for death comprehensively. To address this unmet need, we developed a preliminary version of an innovative website to help patients with advanced cancer prepare for end-of-life tasks. METHODS: Guided by the Obesity-Related Behavioral Intervention Trials (ORBIT) model for behavioral intervention development, patients with advanced cancer (n = 10) and their caregivers (n = 10) participated in a "Think Aloud" exercise and usability protocols to optimize the end-of-life planning website. The website was iteratively refined throughout the study in collaboration with the partnering company, Peacefully, Inc. Participants also completed the Acceptability E-Scale and System Usability Scale, with a priori benchmarks established for acceptability (scores of ≥ 24 on the Acceptability E-Scale) and usability (scores of ≥ 68 on the System Usability Scale). RESULTS: Patients (N = 10) and caregivers (N = 10) completed usability testing. Patients were majority female (80%), White (100%), and had a mean age of 58 years. Caregivers (N = 10) were majority male (60%), spouse/partner (90%), White (90%), and had a mean age of 59 years. For patients, a priori hypotheses were met for both acceptability (mean score of 24.7, SD = 4.35) and usability (mean score of 73.8, SD = 6.15). For caregivers, acceptability was just below the cutoff (mean score of 22.9, SD = 4.07) and usability exceeded the cutoff (mean score of 70.0, SD = 8.42). Overall, patients and caregivers reported high levels of satisfaction and found the website helpful, with specific suggestions for changes (e.g., add more information about information security, improve text legibility). CONCLUSIONS: The findings from this study will inform modifications to optimize an innovative website to support patients with advanced cancer to prepare holistically for end-of-life tasks.
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Neoplasias , Humanos , Femenino , Masculino , Persona de Mediana Edad , Neoplasias/terapia , Pacientes , Proyectos de Investigación , Terapia Conductista , MuerteRESUMEN
Oncology clinicians often miss opportunities to communicate empathy to patients. The current study examined the relationship between implicit bias (based on cancer type and ethnicity) and medical students' empathic communication in encounters with standardized patients who presented as Hispanic (lung or colorectal) individuals diagnosed with cancer. Participants (101 medical students) completed the Implicit Association Test (IAT) to measure implicit bias based on cancer type (lung v. colorectal) and ethnicity (Hispanic v. non-Hispanic White). Empathic opportunities and responses (assessed by the Empathic Communication Coding System; ECCS) were evaluated in a mock consultation (Objective Structured Clinical Examination; OSCE) focused on smoking cessation in the context of cancer. Among the 241 empathic opportunities identified across the 101 encounters (M = 2.4), 158 (65.6%) received high empathy responses from the medical students. High empathy responses were most frequently used during challenge (73.2%) and emotion (77.3%) opportunities compared to progress (45.9%) opportunities. Higher levels of implicit bias against Hispanics predicted lower odds of an empathic response from the medical student (OR = 3.24, p = .04, 95% CI = 0.09-0.95). Further work is needed to understand the relationship between implicit bias and empathic communication and inform the development of interventions.
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Background: Advanced cancer patients need an accurate understanding of their prognoses in order to engage in informed end-of-life care treatment decision-making. Latino cancer patients experience disparities around prognostic understanding, in part due to a lack of culturally competent communication around prognosis and advance care planning (ACP). Objective: The objective of the present study of Latino patients with advanced, terminally ill cancer is to examine their understanding of prognosis, and how cultural factors may influence this understanding and engagement in ACP. Methods: A mixed methods study was conducted, which consisted of surveys and semi-structured interviews. Descriptive statistics were used for sociodemographic information and self-reported prognostic understanding. Interviews around prognostic understanding and cultural influences on this understanding and engagement in ACP were recorded, transcribed, and then coded and analyzed using thematic content analysis. Findings: Latino patients with advanced cancer (n = 20) completed a self-reported survey and participated in a semi-structured interview. Results indicate that among terminally ill patients, 50% of the patients inaccurately believed they had early-stage cancer, 85% did not believe their cancer was terminal, and 70% believed their cancer was curable. Moreover, interviews yielded two main themes: varying levels of awareness of the incurability of their cancer and diverse end-of-life care decision-making and treatment preferences based on prognostic understanding. Within these themes, patients expressed denial or acceptance of their prognosis through communication with the oncologist, the importance of family, and incorporating their pre-existing beliefs. Conclusion: Findings indicate the importance of communication, family involvement, and incorporation of beliefs for promoting an accurate prognostic understanding among Latino patients. It is imperative to address disparities in Latino advanced cancer patients' prognostic understanding so they can engage in informed treatment decision-making around end-of-life care.
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Purpose: Despite a rapidly growing need for home health aides (HHAs), turnover rates are high. While this is driven in large part by the demanding nature of their work and low wages, another factor may be that HHAs are often not considered part of the medical team which can leave them feeling unheard by other healthcare professionals. We sought to determine whether this concept, or HHAs' perceived voice, was associated with job satisfaction. Methods and Design: This cross-sectional survey of English- and Spanish-speaking HHAs caring for adults with heart failure (HF) was conducted from June 2020 to July 2021 in New York, NY in partnership with a labor management fund of a large healthcare union that provides benefits and training to HHAs. Voice was assessed with a validated 5-item scale (total score range 5 to 25). Job Satisfaction was assessed with the 5-item Work Domain Satisfaction Scale (total score range 5 to 35). Multivariable linear regression analysis was used to examine the association between voice and job satisfaction. Results: A total of 413 HHAs employed by 56 unique home care agencies completed the survey; they had a mean age of 48 years, 97.6% were female, 60.2% were Hispanic, and they worked as HHAs for a median of 10 years (IQR, 5, 17). They had a median Voice score of 18 (IQR 15-20) and mean job satisfaction score of 26.4 (SD 5.6). Higher levels of voice (1.75 [0.46-3.04]) were associated with greater job satisfaction (p=0.008). When adjusting for Race/Ethnicity, HF training, and HF knowledge, the association between Voice and job satisfaction remained significant ((1.77 [0.40-3.13]). Conclusion: HHAs with a voice in the care of their patients experienced greater job satisfaction. Voice may be an important target for interventions aiming to improve HHAs' retention in the field.
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Building upon prior work developing and pilot testing a provider-focused Empathic Communication Skills (ECS) training intervention, this study sought feedback from key invested partners who work with individuals with lung cancer (i.e. stakeholders including scientific and clinical advisors and patient advocates) on the ECS training intervention. The findings will be used to launch a national virtually-delivered multi-center clinical trial that will examine the effectiveness and implementation of the evidence-based ECS training intervention to reduce patients' experience of lung cancer stigma. A 1-day, hybrid, key invested partners meeting was held in New York City in Fall 2021. We presented the ECS training intervention to all conference attendees (N = 25) to seek constructive feedback on modifications of the training content and platform for intervention delivery to maximize its impact. After participating in the immersive training, all participants engaged in a group discussion guided by semi-structured probes. A deductive thematic content analysis was conducted to code focus group responses into 12 distinct a priori content modification recommendations. Content refinement was suggested in 8 of the 12 content modification themes: tailoring/tweaking/refining, adding elements, removing elements, shortening/condensing content, lengthening/extending content, substituting elements, re-ordering elements, and repeating elements. Engagement and feedback from key invested multi-sector partner is a valuable resource for intervention content modifications. Using a structured format for refining evidence-based interventions can facilitate efforts to understand the nature of modifications required for scaling up interventions and the impact of these modifications on outcomes of interest. ClinicalTrials.gov Identifier: NCT05456841.
This study was done to get feedback from people who are involved with patients with lung cancer (PwLCs) including scientists, clinicians, and patient advocates on training in Empathic Communication Skills (ECS). The training is intended to reduce PwLCs experience of lung cancer stigma. The feedback is being used to help prepare for launching the training program in multiple cancer centers across the USA to test how well the training will work to reduce the stigma felt by PwLCs. A one-day, hybrid (in-person and virtual attendees) meeting was held in New York City in October 2021. We presented the original version of the ECS training program to all conference attendees (N = 25) to get feedback on modifications to improve the training program for the larger study planned at many cancer centers. After the training, all meeting attendees participated in a semi-structured group discussion. The content of the discussion was analyzed and sorted into 12 distinct categories that were defined before the meeting. Changes to the content were suggested in 8 of the 12 categories. These changes included tailoring/tweaking/refining, adding elements, removing elements, shortening/condensing content, lengthening/extending content, substituting elements, re-ordering elements, and repeating elements. Engaging and getting feedback from people involved in a topic is a good way to improve content and delivery of training materials.
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Six years ago, we published a paper describing the Society of Behavioral Medicine's (SBM) health policy organizational leadership structure and policy initiatives. The purpose of the current paper is to provide an update on changes in the infrastructure and new policy initiatives that have been developed since 2017. We review each of the policy leadership arms of SBM including details of the work of each and goals for the future. The SBM engages in several health policy advocacy efforts through their Advocacy Council and Position Statements Committee. The Advocacy Council launched the Health Policy Ambassador Program in 2020. The Ambassador Program serves to train members to develop longer-term relationships with legislative staff around key policy priority areas. The Position Statements Committee is responsible for overseeing the development and dissemination of health policy position statements. Both groups work together and with partner organizations to increase the impact of our science. Over the last 6 years, developing a stronger infrastructure and implementing metrics for progress such as tracking social media engagement has helped to move SBM's policy agenda forward. The work of the policy-related leadership teams can serve as a model for other organizations who are interested in further developing their policy advocacy efforts.
The Society of Behavioral Medicine (SBM) engages in several health policy advocacy efforts through their Advocacy Council and Position Statements Committee. The Advocacy Council launch the Health Policy Ambassador Program in 2020. The Ambassador Program serves to train members to develop longer-term relationships with legislative staff around key policy priority areas. The Position Statements Committee is responsible for overseeing the development and dissemination of health policy position statements. Both groups work together and with partner organizations to increase the impact of our science. Over the last 6 years, developing a stronger infrastructure and implementing metrics for progress has helped to move SBM's policy agenda forward. The work of the policy-related leadership teams can serve as a model for other organizations who are interested in further developing their policy advocacy efforts.
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Medicina de la Conducta , Humanos , Sociedades , Política de SaludRESUMEN
BACKGROUND: The goal of this study was to develop and optimize an intervention designed to address barriers to engagement in advance care planning (ACP) among Latino patients with advanced cancer. The resulting intervention, titled Planning Your Advance Care Needs (PLAN), is grounded in theoretical models of communication competence and sociocultural theory. MATERIALS AND METHODS: An initial version of the PLAN manual was developed based on a prior intervention, Ca-HELP, that was designed to improve communication around pain among cancer patients. PLAN uses this framework to coach patients on how to plan for and communicate their end-of-life care needs through ACP. In the present study, feedback was obtained from key stakeholders (n = 11 patients, n = 11 caregivers, n = 10 experts) on this preliminary version of the PLAN manual. Participants provided ratings of acceptability and feedback around the intervention content, format, design, modality, and delivery through quantitative survey questions and semi-structured qualitative interviews. RESULTS: Results indicated that the PLAN manual was perceived to be helpful and easy to understand. All stakeholder groups liked the inclusion of explicit communication scripts and guidance for having conversations about ACP with loved ones and doctors. Specific feedback was given to modify PLAN to ensure it was optimized and tailored for Latino patients. Some patients noted reviewing the manual motivated engagement in ACP. CONCLUSIONS: Feedback from stakeholders resulted in an optimized, user-centered version of PLAN tailored to Latino patients. Future research will examine the acceptability, feasibility, and potential efficacy of this intervention to improve engagement in ACP.
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Primary care research represents only 1% of all federally funded projects. However, innovation in primary care is central to advancing health care delivery. Indeed, leaders in health care innovation recently called for primary care payment reform proposals to be tested in accountable care organizations (ACOs) consisting of independent practices (ie, practices not owned by hospitals). Yet these same practices may have less experience with the kind of systematic innovation that leads to generalizable insights, because what little funding is available for primary care research is mostly awarded to large academic medical centers. In this commentary, we report on lessons learned over 2 years (2020-2022) from conducting primary care research through a novel alliance of an ACO consisting of independent practices, a health plan, and several academic researchers, with the support of a private foundation. This collaboration is also notable because it was specifically assembled to address racial and ethnic inequities in the midst of the COVID-19 pandemic.
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Organizaciones Responsables por la Atención , COVID-19 , Humanos , Estados Unidos , Etnicidad , Grupos Minoritarios , Pandemias , Atención Primaria de Salud , Poblaciones Minoritarias, Vulnerables y Desiguales en SaludRESUMEN
This essay describes the challenges of home care in the US and advocates for incorporating elements of advance care planning and building navigation systems for obtaining and managing care.
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Planificación Anticipada de Atención , Servicios de Atención de Salud a Domicilio , HumanosRESUMEN
Although racial and ethnic disparities in diagnosis, treatment, and survival have been well documented within the field of hematologic malignancies, very little work has focused on testing interventions that may reduce these disparities. The aim of this commentary is to review prior work in hematologic malignancies and explore new opportunities to develop disparity-reducing interventions by drawing from evidence-based strategies that have been successfully implemented in fields related to hematologic malignancies, including oncology and solid organ transplants. Relevant literature demonstrates that patient navigation and broader insurance coverage have been shown to reduce racial and ethnic disparities among patients with solid malignancies such as colorectal and breast cancer. Evidence-based strategies that might be most applicable to the field of hematologic malignancies include patient navigation and policy changes.
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Neoplasias de la Mama , Neoplasias Hematológicas , Femenino , Humanos , Disparidades en Atención de Salud , Neoplasias Hematológicas/terapia , Grupos Raciales , Estados UnidosRESUMEN
OBJECTIVES: Latino patients have been shown to engage in advance care planning (ACP) at much lower rates than non-Latino White patients. Coping strategies, such as the use of emotional support, may differentially relate to engagement in ACP among Latino and non-Latino patients. The present study sought to examine the moderating effect of ethnicity on the relationship between the use of emotional support as a coping strategy and completion of advance directives. METHODS: The present study employed a weighted sample (Nw = 185) of Latino and non-Latino White patient participants in Coping with Cancer III, an National Institutes of Health-sponsored, multisite, longitudinal, observational cohort study of patients with advanced cancer and their informal caregivers and oncology providers designed to evaluate Latino/non-Latino disparities in ACP and end-of-life cancer care. Main and interaction effects of Latino ethnicity and use of emotional support on patient use of advance directives were estimated as odds ratios. RESULTS: Use of emotional support was associated with dramatically lower do-not-resuscitate (DNR) order completion to a greater extent among Latino as compared to non-Latino patients (interaction AOR = 0.33, p = 0.005). Interaction effects were not statistically significant for living will or health-care proxy form completion. SIGNIFICANCE OF RESULTS: Use of emotional support is associated with lower odds of completing DNRs among Latino than among non-Latino patients. Seeking and/or receiving emotional support may deter Latino patients from completing DNR orders. Research is needed to address both emotional needs and practicalities to ensure high quality end-of-life care among Latino patients with cancer.