An examination of two dichotomies: Women with lung cancer and living with lung cancer as a chronic disease.

Lung cancer remains the leading cause of cancer death globally, yet with many recent advances in the diagnosis and treatment of lung cancer, the face of the disease is shifting. Historically, lung cancer is often thought of as a predominantly male disease with more than twice as many men as women being diagnosed worldwide-mostly due to the influence of smoking as the leading risk factor. However, lung cancer is also the second leading cause of cancer death in women and there is a growing population of young women who have never smoked and are being diagnosed. The past decade has seen groundbreaking innovations in both the early detection and treatment of lung cancer. In this new era, survival rates are beginning to increase and many of those diagnosed are finding themselves in a new situation-living long term with a deadly cancer. Here, we review pertinent aspects of women and lung cancer as well as the concept of living with lung cancer as a chronic disease to give a new perspective on the changing face of lung cancer treatment and care.

Survivor guilt: The secret burden of lung cancer survivorship.

Objectives: Historically, long-term survival following diagnosis of lung cancer has been a rare occurrence. An overall poor prognosis and the low likelihood of long-term survival are thought to precipitate survivors experiencing what is referred to as survivor guilt. This study explored the prevalence and nature of survivor guilt among lung cancer survivors. Methods: Lung cancer survivors (n = 108) completed an online survey through a national organization's online community platform. This survey included a commonly used measure of survivor guilt targeting lung cancer and a single item that asked about whether they had experienced survivor guilt associated with lung cancer. Additionally, survivors were asked to provide open-ended descriptions of survivor guilt. In-depth thematic analysis was used to analyze these in-depth responses from those with the highest guilt scores on the survey measure (top quartile). Results: Survey responses revealed a majority of study respondents endorsed survivor guilt with 55% reporting an experience of survivor guilt associated with lung cancer. In addition, 63.9% of respondents scored above the mean on the survivor guilt scale. Qualitative analysis revealed five recurring themes among respondents with the highest survivor guilt scores (top quartile): 1) mentioning the death of others, 2) questioning "why not me?" 3) the role of the passage of time on emotions experienced, 4) the role of demographic and clinical characteristics' on survivor guilt, and 5) strategies for coping with survivor guilt. Conclusions: This study identifies survivor guilt in lung cancer survivors and raises clinical awareness that managing survivor guilt is a psychosocial challenge for lung cancer survivors. Results highlight the need for addressing this critical issue.

Stigma, self-blame, and satisfaction with care among patients with lung cancer.

OBJECTIVE: We sought to understand the experiences of patients with lung cancer and to see if attitudes varied by demographic factors. METHODS: We administered a 63-question survey by phone or online among 174 patients with lung cancer. Factor analysis was used to identify two groups of questions with a conceptual relationship and high Cronbach's alphas, stigma and satisfaction with care. We used a multivariable analysis to identify predictors of self-blame and the factors of stigma and satisfaction with care. RESULTS: Patients were satisfied with the quality of their care and treatment choices but did not feel that there is enough public support for or research in lung cancer. Predictors of lower satisfaction with care were never being a smoker, lack of college education, not living in a rural location, refusing to report income, and not knowing/not being sure of stage. Self-blame was modest; in multivariable analysis, predictors of self-blame were believing that smoking was a cause of their lung cancer, younger age, male sex, living in a suburban location, and not knowing/not being sure of the stage of the cancer. Reported stigma was low and the only predictor for stigma was being married. Despite low scores on their personal experience of stigma, patients reported a high degree of stigmatization of lung cancer in general. Smoking was a significant predictor of personal stigma. CONCLUSION: Despite satisfaction with their treatment and care, lung cancer patients feel that society stigmatizes them as a general population. Patients who smoke are more likely to report that they have personally experienced stigma.

Real-world analysis of the relationships between smoking, lung cancer stigma, and emotional functioning.

INTRODUCTION: People diagnosed with lung cancer experience high rates of distress, which can be compounded by the stigma of the disease. This study assessed a real-world population to understand patient-reported emotional functioning, types of stigma experienced, and relationship with smoking history. METHODS: Questionnaires using validated survey tools assessing demographics, smoking history, stigma, and quality of life (EORTC QLQ-C30 Emotional Functioning Scale) were analyzed from 539 global participants in the Lung Cancer Registry between November 2019 and July 2022. The associations between smoking history and self-reported internalized and perceived stigma and constrained disclosure of lung cancer diagnosis, as well as the potential impact of stigma on emotional functioning, were examined using multivariable logistic regression models. RESULTS: Among the broad geographic mix of study participants, all types of lung cancer stigma were associated with decreased emotional functioning due to a combination of factors including depression, anxiety, stress, and irritability. Participants who reported a history of current or former smoking experienced higher levels of internalized stigma and perceived stigma. Constrained disclosure about a diagnosis was common, associated with decreased emotional functioning, and not related to a history of smoking. Smoking status itself was not associated with reduced emotional functioning, implicating the role of stigma in distress. CONCLUSIONS: In this study, all types of lung cancer stigma were associated with clinically important decreases in emotional functioning. This impact was not dependent on smoking history. Internalized and perceived stigma were associated with the presence of a smoking history. These findings have implications for proper psychosocial care of people diagnosed with lung cancer.

Influences on Lung Cancer Screening Initiation and Retention in Rural Alabama.

INTRODUCTION/OBJECTIVES: Despite the introduction of lung cancer screening using low dose computed tomography (LDCT), overall screening rates in the U.S. remain low, with certain populations including Black and rural communities experiencing additional disparities. The primary objective of this study was to understand the facilitators of lung cancer screening initiation and retention in Alabama reported by people at risk from mostly rural, mostly Black populations in Jefferson County-including the urban center of Birmingham-and 6 rural counties: Choctaw, Dallas, Greene, Hale, Marengo, and Sumter. METHODS: We conducted semi-structured telephone interviews with 58 people who underwent lung cancer screening between December 2019 and January 2022. Participant responses were recorded by the interviewer for analysis. Open-ended responses were coded to identify emergent themes. RESULTS: The most reported influences to initiate screening were information or suggestion from a Community Health Advisor (CHAs) or the supervising county coordinator, suggestion from a friend, or consideration of a personal history of smoking. Most participants reported multiple influences. Physicians were not very influential in decisions to initiate screening, but they were extremely influential in participants' intent to continue screening, both positively and negatively. Knowing the recommended timeline for their annual scans was also a predictor of intention to continue screening. Participants screened during the COVID-19 state of emergency expressed less certainty about dates of next scans and more ambivalence about intention to continue screening. CONCLUSIONS: This study shows the benefit of using multiple methods to support increased awareness of and interest in lung cancer screening, particularly when educational messaging through CHAs is used. Clear guideline-based messages from healthcare providers about recommended screening is important for increasing retention. COVID-19 related implementation challenges impacted screening recruitment and retention. Future research is warranted to further explore use of CHAs in lung cancer screening.

Health inequities across the lung cancer care continuum in ten marginalized populations: a narrative review.

Background and Objective: Lung cancer remains the deadliest cancer in the United States. Although lung cancer screening and innovative treatment options are available, accessing these interventions remains a barrier for marginalized communities due to social and structural challenges that influence health care access, which has led to worse outcomes when compared to Non-Hispanic Whites (NHW) and non-marginalized populations. The objective of this study is to examine disparities in lung cancer and social/structural factors within ten critical populations (racial/ethnic minorities, low income, rural, LGBTQIA+, women, veteran and active duty, and small cell lung cancer) across the continuum of lung cancer care. Methods: Five databases (PubMed, the Cochrane Library, EMBASE, Web of Knowledge, and EBSCO Discovery Service) were queried from February 2022-June 2022. The inclusion criteria were (I) peer-reviewed academic journals published in English between the years 2000 and 2022; (II) research that focused on disparities across the lung cancer continuum; and (III) research articles addressing social and structural barriers to lung cancer health care access. A total of 95 articles and 24 reports were used for this narrative review. Key Content and Findings: Across the ten populations, consistent disparities were observed in lung cancer screening and treatment, exhibited by lower uptake in screening, treatment, clinical trials, and biomarker testing. Significant themes contributing to these disparities were socioeconomic status, transportation, language, historic trauma, provider bias or lack of cultural training, and lack of health care access, in part due to insurance coverage. Conclusions: Future studies are needed to further develop meaningful solutions to disparities in health outcomes and access for those who are at risk, diagnosed with, or surviving lung cancer from marginalized populations.

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.

Identifying Barriers to Advocacy Among Patients With Lung Cancer: The Role of Stigma-Related Interpersonal Constraint.

OBJECTIVES: To examine whether aspects of disease-specific stigma are barriers to advocacy among individuals with lung cancer. SAMPLE & SETTING: 266 patients with lung cancer treated at two National Cancer Institute-designated comprehensive cancer centers in the United States. METHODS & VARIABLES: Patients completed a cross-sectional survey. Demographic, clinical, and stigma-related correlates of advocacy were also explored. RESULTS: In multivariable analyses, lower levels of patient advocacy were reported by older patients and those with higher levels of constrained disclosure (i.e., avoidance of or discomfort in disclosing one's lung cancer status). IMPLICATIONS FOR NURSING: Avoidance of discussing lung cancer (constrained disclosure) may be a barrier to patient involvement in advocacy. Additional research is needed to examine this relationship, reduce stigma, and promote inclusivity for individuals with lung cancer.

Reducing stigma triggered by assessing smoking status among patients diagnosed with lung cancer: De-stigmatizing do and don't lessons learned from qualitative interviews.

Objective: To characterize lung cancer patients' reactions to cancer care providers' (CCPs) assessment of smoking behavior and to develop recommendations to reduce stigma and improve patient-clinician communication about smoking in the context of lung cancer care. Methods: Semi-structured interviews with 56 lung cancer patients (Study 1) and focus groups with 11 lung cancer patients (Study 2) were conducted and analyzed using thematic content analysis. Results: Three broad themes were identified: cursory questions about smoking history and current behavior; stigma triggered by assessment of smoking behavior; and recommended dos and don'ts for CCPs treating patients with lung cancer. CCP communication that contributed to patients' comfort included responding in an empathic manner and using supportive verbal and non-verbal communication skills. Blaming statements, doubting patients' self-reported smoking status, insinuating subpar care, nihilistic statements, and avoidant behaviors contributed to patients' discomfort. Conclusions: Patients often experienced stigma in response to smoking-related discussions with their CCPs and identified several communication strategies that CCPs can use to improve patients' comfort within these clinical encounters. Innovation: These patient perspectives advance the field by providing specific communication recommendations that CCPs can adopt to mitigate stigma and enhance lung cancer patients' comfort, particularly when taking a routine smoking history.

A 10-Year Cross-Sectional Analysis of Public, Oncologist, and Patient Attitudes About Lung Cancer and Associated Stigma.

INTRODUCTION: Lung cancer stigma negatively impacts the clinical care and outcomes of those diagnosed, resulting in enduring disparities. The objective of this study was to determine whether attitudes toward lung cancer and the stigmatization of people diagnosed have changed over a decade. METHODS: A cross-sectional survey was administered to the general public, oncologists, and people with lung cancer 10 years apart (2008 and 2018) using the same instrument and methodology. The measures of stigma agreement ratings on a five-point Likert scale were compared between 2008 and 2018 for all three sample groups. RESULTS: In 2018, a total of 1001 members of the general public, 205 oncologists, and 208 people with lung cancer were enrolled. Improvements were noted over the decade, including the availability of more treatment options. Greater disease awareness was also found, with 94% of the public reporting knowledge of lung cancer (versus 82.5% in 2008, p < 0.0001). However, no change was found in the percentage of the public reporting that patients with lung cancer are at least partially to blame for their illness (60.3% in 2018). In 2018, more people with lung cancer agreed there is a stigma associated with lung cancer (72.1 versus 54.5%, p < 0.001) and that those diagnosed are viewed or treated differently by society in general (69.4% versus 50.8%, p < 0.001). CONCLUSIONS: The results reflect recognition of treatment gains and increased visibility of lung cancer but also highlight that stigma remains a significant problem. Of critical importance to the care of those diagnosed was the unexpected increase in stigma reported by the patient population.

Responding empathically to patients: a communication skills training module to reduce lung cancer stigma.

Most lung cancer patients report perceiving stigma surrounding their diagnosis, and routine clinical interactions with their health care providers (HCPs) are reported as a common source. The adverse effects of lung cancer stigma are associated with several adverse psychosocial and behavioral outcomes. One potential clinician-level intervention target is empathic communication because of its association with higher rates of patients' satisfaction, treatment adherence, and lower levels of psychological distress. This study describes the conceptual model and evaluation of clinician-targeted empathic communication skills training to reduce lung cancer patients' experience of stigma. The goal of the training module is to enhance clinician recognition and responsiveness to lung cancer patients' empathic opportunities by communicating understanding, reducing stigma and distress, and providing support. Thirty multidisciplinary HCPs working in thoracic oncology, thoracic surgery, or pulmonary medicine participated in 2.25 hr of didactic and experiential training on responding empathically to patients with lung cancer. Overall, participants reported highly favorable evaluations of the training, with at least 90% of participants agreeing or strongly agreeing to 11 of the 12 items assessing clinical relevance, novelty, clarity, and facilitator effectiveness. Participants' self-efficacy to communicate empathically with lung cancer patients increased significantly from pretraining to posttraining, t(29) = -4.58, p < .001. The empathic communication skills training module was feasible and well received by thoracic and pulmonary medicine HCPs and demonstrated improvements in self-efficacy in empathic communication from pretraining to posttraining. The examination of patient outcomes is warranted.

Oncology Care Provider Training in Empathic Communication Skills to Reduce Lung Cancer Stigma.

BACKGROUND: Despite the clinical importance of assessing smoking history and advising patients who smoke to quit, patients with lung cancer often experience feelings of blame and stigma during clinical encounters with their oncology care providers (OCPs). Promoting empathic communication during these encounters may help reduce patients' experience of stigma and improve related clinical outcomes. This paper presents the evaluation of OCP- and patient-reported data on the usefulness of an OCP-targeted empathic communication skills (ECS) training to reduce the stigma of lung cancer and improve communication. RESEARCH QUESTION: What is the impact of the ECS intervention on OCPs' communication skills uptake and patient-reported outcomes (lung cancer stigma, satisfaction with communication, and perceived OCP empathy)? METHODS: Study subjects included 30 multidisciplinary OCPs treating patients with lung cancer who participated in a 2.25 h ECS training. Standardized Patient Assessments were conducted prior to and following training to assess ECS uptake among OCPs. In addition, of a planned 180 patients who currently or formerly smoked (six unique patients per OCP [three pretraining, three posttraining]), 175 patients (89 pretraining, 86 posttraining) completed post-OCP visit surveys eliciting feedback on the quality of their interaction with their OCP. RESULTS: OCPs exhibited an overall increase in use of empathic communication skills [t(28) = -2.37; P < .05], stigma-mitigating skills [t(28) = -3.88; P < .001], and breadth of communication skill use [t(28) = -2.91; P < .01]. Patients reported significantly higher overall satisfaction with communication post-ECS training, compared with pretraining [t(121) = 2.15; P = .034; Cohen d = 0.35]. There were no significant differences from pretraining to posttraining for patient-reported stigma or perceived OCP empathy. INTERPRETATION: Empathy-based, stigma-reducing communication may lead to improved assessments of tobacco use and smoking cessation for patients with smoking-related cancers. These findings support the dissemination and further testing of a new ECS model for training OCPs in best practices for assessment of smoking history and engagement of patients who currently smoke in tobacco treatment delivery.

A Qualitative Analysis of "Naturalistic" Conversations in a Peer-Led Online Support Community for Lung Cancer.

BACKGROUND: Online support communities are popular in use by patients with cancer and their families for emotional, informational, and social support. Nonetheless, most research has focused on diagnoses other than lung cancer, indicating a need for studies to include more diverse participants and cancer conditions. OBJECTIVE: Our aim was to describe the content of messages in a United States-based online support community for lung cancer. METHODS: A descriptive exploratory qualitative approach was used to analyze a sample of 688 pages with threaded messages across 2 time periods in 2008 and 2009. We analyzed 68 main posts and 586 replies in 344 pages for period 1 (262 users), and 55 main posts and 697 replies in 344 pages for period 2 (307 users). RESULTS: Most users were female and equally divided as patients or support persons. Content analysis generated 9 themes: disease information, diagnostic test information, treatment information, symptoms, marked deterioration, advocacy, experiencing healthcare providers and the system, positive survivorship, and making sense of emotions. CONCLUSION: Findings highlighted how the online support community is a valued, accessible avenue for information exchange and nonjudgmental emotional support for individuals dealing with lung cancer. IMPLICATIONS FOR PRACTICE: Findings of daily living needs as articulated in this online community serve as a valuable guide for nurses to: better understand support needs, participate in developing and evaluating effective Internet and educational supports, and be better informed as advocates for more resources for Internet support mechanisms for people dealing with stigmatized conditions such as lung cancer.

Public attitudes about lung cancer: stigma, support, and predictors of support.

INTRODUCTION: Lung cancer is the leading cause of cancer death, yet public engagement with efforts against lung cancer is low. Public engagement with a cancer is critical to efforts to combat it, yet the reasons for low support for efforts against lung cancer have not been systematically characterized. METHODS: We conducted a telephone survey of 1,071 people to determine levels of engagement and attitudes that might potentially drive engagement. These were then analyzed by univariate and multivariate analysis. RESULTS: Eight percent of participants were involved with a lung cancer organization and 12% chose it among cancers to receive more support. Most participants felt that lung cancer was principally caused by external factors, that it could be cured if caught early, and that lung cancer patients were at least partly to blame for their illness. In multivariate analysis, participants who were supportive in some way of efforts against lung cancer were more likely to be employed, live in suburbia, and to be unsure of the cause of lung cancer. Potential supporters were more likely to be employed, female, younger, have higher income, to believe that genetics is the primary cause of lung cancer, and to believe that lung cancer can be cured when caught early. Participants frequently noted that they supported a particular cancer because of knowing someone affected by that cancer. CONCLUSION: As the lung cancer movement attempts to grow and increase its impact, the most successful recruitment efforts will be targeted to these groups.