Psychosocial symptoms associated with spiritual well-being in Latino patients and caregivers coping with advanced cancer.

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.

A communication intervention to improve prognostic understanding and engagement in advance care planning among diverse advanced cancer patient-caregiver dyads: A pilot study.

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.

Development and refinement of a novel end-of-life planning website for patients with advanced cancer: a mixed methods approach.

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.

Empathic Communication and Implicit Bias in the Context of Cancer Among a Medical Student Sample.

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.

Association between immigrant status and advanced cancer patients' location and quality of death.

BACKGROUND: Cancer patients often prefer to die at home, a location associated with better quality of death (QoD). Several studies demonstrate disparities in end-of-life care among immigrant populations in the United States. This study aimed to evaluate how immigrant status affects location and quality of death among patients with advanced cancer in the United States. METHODS: Data were derived from Coping with Cancer, a federally funded multi-site prospective study of advanced cancer patients and caregivers. The sample of patients who died during the study period was weighted (Nw  = 308) to reduce statistically significant differences between immigrant (Nw  = 49) and nonimmigrant (Nw  = 259) study participants. Primary outcomes were location of death, death at preferred location, and poor QoD. RESULTS: Analyses adjusted for covariates indicated that patients who were immigrants were more likely to die in a hospital than home (adjusted odds ratio [AOR], 3.33; 95% confidence interval [CI], 1.65-6.71) and less likely to die where they preferred (AOR, 0.42; 95% CI, 0.20-0.90). Furthermore, immigrants were more likely to have poor QoD (AOR, 5.47; 95% CI, 2.70-11.08). CONCLUSIONS: Immigrants, as compared to nonimmigrants, are more likely to die in hospital settings, less likely to die at their preferred location, and more likely to have poor QoD. LAY SUMMARY: Cancer patients typically prefer to die in their own homes, which is associated with improved quality of death. However, disparities in end-of-life care among immigrant populations in the United States remain significant. Our study found that immigrants are less likely to die in their preferred locations and more likely to die in hospital settings, resulting in poorer quality of death.

Lung Cancer Stigma: Does Smoking History Matter?

BACKGROUND: Lung cancer patients commonly report stigma, often attributing it to the well-established association of smoking as the leading preventable cause. Theory and research suggest that patients' smoking history may differentiate patients' experience of lung cancer stigma. However, there is inconsistent evidence whether lung cancer stigma varies by patients' smoking history, owing to limitations in the literature. PURPOSE: This study examined differences in lung cancer patients' reported experience of lung cancer stigma by smoking history. METHOD: Participants (N = 266, 63.9% female) were men and women with lung cancer who completed a validated, multidimensional questionnaire measuring lung cancer stigma. Multivariable regression models characterized relationships between smoking history (currently, formerly, and never smoked) and lung cancer stigma, controlling for psychological and sociodemographic covariates. RESULTS: Participants who currently smoked reported significantly higher total, internalized, and perceived lung cancer stigma compared to those who formerly or never smoked (all p < .05). Participants who formerly smoked reported significantly higher total and internalized stigma compared to those who never smoked (p < .001). Participants reported similar levels of constrained disclosure, regardless of smoking history (p = .630). CONCLUSIONS: Total, internalized, and perceived stigma vary meaningfully by lung cancer patients' smoking history. Patients who smoke at diagnosis are at risk for experiencing high levels of stigma and could benefit from psychosocial support. Regardless of smoking history, patients reported similar levels of discomfort in sharing information about their lung cancer diagnosis with others. Future studies should test relationships between health-related stigma and associated health behaviors in other stigmatized groups.

Addressing the quality of communication with older cancer patients with cognitive deficits: Development of a communication skills training module.

OBJECTIVE: Effective communication is an essential part of patient-centered care. The complexity of cancer care in older adults makes communication challenging, particularly when older patients have cognitive deficits and lose their autonomy. This paper describes the development, implementation, and evaluation of a communication skills training module for health care providers (HCPs) who work with older adults with cancer, with or at risk of developing cognitive deficits. METHOD: Using a pre-post single arm study design, 99 HCPs from a comprehensive cancer center in North-East USA, who worked primarily with geriatric patients, participated in the study. Participants included Advance Practice Providers (including Nurse Practitioners and Physician Assistants; n = 24, 24.2%); nurses (n = 23, 23.2%), social workers (n = 14, 14.1%), physicians (n = 13, 13.1%), and "other" HCPs (including occupational therapists, physical therapists, and psychologists; n = 20, 20.2%). The HCPs participated in a one-day geriatric communication skills training program in groups of 12-15 over a 2-year period. Participants complete pre-post surveys on module evaluation and perception of self-efficacy as well as pre-post video-recorded Standardized Patient Assessment (SPA) to evaluate communication skill uptake. RESULTS: Most participants evaluated the module positively; over 90% indicated that they agreed or strongly agreed with five of the six module evaluation items. HCPs' self-efficacy in communicating with cancer patients with cognitive deficits significantly increased from pre- to post-module training. There was a significant increase in the following communication skill use from pre- to post-training: checking patient preferences, declaring agenda, and inviting agenda. SIGNIFICANCE OF RESULTS: Results demonstrated a successful implementation of the program as evidenced through favorable program evaluation, significant gains in self-efficacy, as well as significant improvement in several communication skills.

Lung cancer stigma and depression: Validation of the Lung Cancer Stigma Inventory.

OBJECTIVE: In an effort to provide further evidence for the validity of the Lung Cancer Stigma Inventory (LCSI), this paper examined group differences in lung cancer stigma for patients who report clinically significant depressive symptoms and established a suggested scoring benchmark to identify patients with clinically meaningful levels of lung cancer stigma. METHODS: Patients (N = 231) who were diagnosed with lung cancer and treated within the past 12 months at one of two National Cancer Institute (NCI)-designated Cancer Centers located in the northeast and southern parts of the United States completed a single battery of questionnaires examining lung cancer stigma and depressed mood. Group differences, bivariate correlations, and receiver operating characteristic (ROC) analyses were conducted. RESULTS: Slightly more than a third of patients (35.9%) reported an elevated level of depression. There was a significant correlation (r = 0.44) between lung cancer stigma and depressive mood. The ROC curve analysis indicated an area under curve (AUC) of 0.71. A LCSI cutoff score of 37.5 yielded the optimal ratio of sensitivity (0.93) to specificity (0.70) for identifying patients with clinically meaningful lung cancer stigma. CONCLUSIONS: Consistent with prior work, lung cancer stigma, as measured by the LCSI, was found to be moderately associated with depressed mood. Clinical investigators may use an LCSI total score above 37.5 (ie, greater than or equal to 38 on the LCSI scale of integer scores) as a clinical threshold for identifying patients who may be experiencing clinically meaningful stigma and may benefit from stigma-reducing interventions.

Sources of distress among patients undergoing surgery for colorectal cancer: a qualitative study.

BACKGROUND: Distress is common among cancer and surgical patients and can lead to worse outcomes if untreated. The objective of this study was to explore sources of distress among colorectal cancer patients undergoing surgery. MATERIALS AND METHODS: This was a qualitative study using in-depth, semistructured, one-on-one interviews in an academic setting. Patients were recruited if they had a pathologically confirmed diagnosis of colon or rectal cancer. Purposive sampling was used to recruit patients who were about to undergo (preoperative), or had recently undergone (postoperative), curative resection for colorectal cancer. RESULTS: All participants (n = 24) reported experiencing distress during treatment. Participants identified sources of distress preoperatively (negative emotional reaction to diagnosis, distress from preconception of cancer diagnosis, and distress interacting with healthcare system). Sources of distress during in-hospital recovery included negative emotional reaction to having a surgery and negative emotions experienced in the hospital. Postoperative sources of distress included mismatch of expectations and experience of recovery, dealing with distressing physical symptoms and complications after surgery, and distress worrying about recurrence. Participants identified other sources of distress that were not time-specific (distress related to social support network, from disruption of life, and worrying about death). CONCLUSIONS: Our results highlight a potential role for a comprehensive screening program to identify which patients require assistance with addressing sources of distress during the surgical experience. Understanding how sources of distress may vary by time will help us tailor interventions at different time points of the surgical experience.

Accuracy of advanced cancer patients' life expectancy estimates: The role of race and source of life expectancy information.

BACKGROUND: The objective of this study was to examine the source of advanced cancer patients' information about their prognosis and determine whether this source of information could explain racial disparities in the accuracy of patients' life expectancy estimates (LEEs). METHODS: Coping With Cancer was a prospective, longitudinal, multisite study of terminally ill cancer patients followed until death. In structured interviews, patients reported their LEEs and the sources of these estimates (ie, medical providers, personal beliefs, religious beliefs, and other). The accuracy of LEEs was calculated through a comparison of patients' self-reported LEEs with their actual survival. RESULTS: The sample for this analysis included 229 patients: 31 black patients and 198 white patients. Only 39.30% of the patients estimated their life expectancy within 12 months of their actual survival. Black patients were more likely to have an inaccurate LEE than white patients. A minority of the sample (18.3%) reported that a medical provider was the source of their LEEs; none of the black patients (0%) based their LEEs on a medical provider. Black race remained a significant predictor of an inaccurate LEE, even after the analysis had been controlled for sociodemographic characteristics and the source of LEEs. CONCLUSIONS: The majority of advanced cancer patients have an inaccurate understanding of their life expectancy. Black patients with advanced cancer are more likely to have an inaccurate LEE than white patients. Medical providers are not the source of information for LEEs for most advanced cancer patients and especially for black patients. The source of LEEs does not explain racial differences in LEE accuracy. Additional research into the mechanisms underlying racial differences in prognostic understanding is needed. Cancer 2016;122:1905-12. © 2016 The Authors. Cancer published by Wiley Periodicals, Inc. on behalf of American Cancer Society. This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made.

Does death anxiety affect end-of-life care discussions?

OBJECTIVES: The aim of this study was to determine if a gynecologic cancer patient's comfort level discussing end-of-life care issues with her caregivers is related to her death anxiety level. MATERIALS/METHODS: Gynecologic oncology clinic patients were asked to rate their degree of agreeability with 4 statements regarding comfort level discussing end-of-life care issues. Participants also completed the Hoge's Intrinsic Religiosity Scale and Templer's Death Anxiety Scale. RESULTS: Four hundred one surveys were distributed. One hundred twenty-nine patients participated, with a response rate of 32.2%. The median age of the sample was 55 years. Most patients were white (72.9%), married (58.9%), and Christian (85.3%). Most patients had ovarian cancer (40.4%). Of the 74 patients who knew their cancer stage, 59% had been diagnosed with advanced (stage III-IV) disease. Thirty-three percent were currently in remission, and 17% had recurrent disease. Of all patients surveyed, 32.6% were currently receiving treatment. Chemotherapy was the most common treatment (62% of those being treated). Higher level of comfort discussing end-of-life care topics such as do-not-resuscitate orders with family members was significantly associated with decreased death anxiety (P = 0.008 and P = 0.001). There was no significant association between comfort level when patients discussed do-not-resuscitate orders with physicians and patients' death anxiety (P = 0.14). After controlling for age, race, marital status, education level, current treatment status, and religiosity, linear regression analysis demonstrated that the relationship between a patient's increased comfort level when discussing end-of-life care topics with family members and decreased death anxiety remained statistically significant (P = 0.005 and P = 0.001). CONCLUSIONS: Conversations regarding goals of treatment are an important component of caring for cancer patients. Death anxiety may contribute to decreased communication between patients and their family members regarding the patient's end-of-life care wishes. Obtaining a better understanding of the role death anxiety plays in end-of-life care discussions may help patients receive the end-of-life care they desire.

Acceptability and usability of the Planning Advance Care Together (PACT) website for improving patients' engagement in advance care planning.

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.

Mental Health and Well-Being Among Home Health Aides.

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.

Latino advanced cancer patients' prognostic awareness and familial cultural influences on advance care planning engagement: a qualitative study.

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.

Too Close for Comfort? Attitudes of Gynecologic Oncologists Toward Caring for Dying Patients.

PURPOSE: To assess gynecologic oncologists' attitudes relating to palliative care referrals among advanced cancer patients. METHODS: Gynecologic oncologists were surveyed using validated measures to assess stigmatizing attitudes toward palliative care, anticipated stigma of palliative care, acceptance of palliative care, and willingness to refer to palliative care. Descriptive statistics were calculated. Analysis was performed using linear regression. RESULTS: 1200 physicians received the survey and 108 (9%) completed it. Most were female (69.4%) and white (82.4%). Most practiced in academics (64.8%) in urban environments (71.3%). Respondents did not have anticipated stigma surrounding palliative care referral (mean score 1.89, range 1-7, higher score indicating more stigma), were accepting of palliative care (mean score 1.45, range 1-7, higher score indicating less acceptance), and were willing to refer patients to palliative care (mean score 5.75, range 1-7, higher score indicating more willingness to refer). Linear regression demonstrated females had less anticipated stigma surrounding palliative care (B = -.213, P = .04) and higher acceptance of palliative care (B = -.244, P = .01). Most surveyed derived satisfaction from work with advanced cancer patients (83%). Nineteen percent were depressed by managing advanced cancer patients. One fourth felt emotionally burned out by dealing with too many deaths. CONCLUSIONS: Most gynecologic oncologists did not exhibit stigma surrounding palliative care and derive satisfaction from their work. Some gynecologic oncologists experience depression and burnout related to their profession. This close connection with patients as they transition to the end of life may take a toll on providers.

Planning for Your Advance Care Needs (PLAN): A Communication Intervention to Improve Advance Care Planning among Latino Patients with Advanced Cancer.

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.

Building research capacity in primary care practices that serve predominantly racial and ethnic minority populations.

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.

Getting ready for prime time: Recommended adaptations of an Empathic Communication Skills training intervention to reduce lung cancer stigma for a national multi-center trial.

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.

Family as a Bridge to Improve Meaning in Latinx Individuals Coping with Cancer.

Background: Family and meaning-making resources are culturally congruent and help support Latinx coping with cancer. Objectives: To explore Latinx advanced cancer patients' perspectives on the role of family and meaning/purpose in adjustment to advanced cancer. Methods: A qualitative study was conducted. In-depth interviews were performed and transcripts were analyzed using the method from applied thematic analysis. Setting/Subject: Participants were patients with any advanced cancer diagnosis, recruited from Memorial Sloan Kettering Cancer Center (MSKCC), New York; Lincoln Medical Center (LMC), New York; and Ponce Health Science University (PHSU), Puerto Rico. Measurements: Sociodemographic and semistructured interview. Results: N = 24 in-depth interviews were completed by Latinx advanced cancer patients (Stage III and IV). When evaluating patients' perspectives on the role of family and meaning/purpose in adjustment to advanced cancer, the team generated three categories: (1) family support, (2) family communication, and (3) include support for the family. Many patients reported the importance of family as a source of meaning and social support in the process of cancer diagnosis and treatment. They also reported communication as central to process information and planning. Also, participants describe their desire to incorporate family members into therapy and for encouraging them to seek counseling. Conclusions: Results highlight the need to include syntonic cultural values such as family and meaning for Latinx individuals coping with advanced cancer in psychological interventions.