Lung Cancer Stigma Then and Now: Continued Challenges Amid a Landscape of Progress

The last decade has shown significant progress in the fight against lung cancer, including advances in effective tobacco control, screening, targeted treatments, immunotherapies, and supportive care.^1,2 At the same time, increased attention has highlighted the challenges faced by patients with lung cancer and their families, most notably the stigma associated with risk, diagnosis, and treatment.³ How have these changes been perceived by the larger public, oncologists, and individuals diagnosed with lung cancer? This is a question addressed by Rigney et al.⁴ in their cross-sectional surveys of lung cancer perceptions, administered 10 years apart. The researchers used the same questions and methodology to assess attitudes of separate samples of patients with lung cancer, oncologists, and members of the general public in 2008 (N = 1481) and 2018 (N = 1414). The surveys suggest that, despite higher lung cancer awareness and treatment optimism in 2018 versus 2008, stigma continues to be a formidable issue. In fact, public attributions of lung cancer blame remained steady over the decade, with higher acknowledgment and reports of stigma among patients with lung cancer. Overall, this study emphasizes significant progress in visibility and treatment, but also a critical need to focus on multilevel interventions to prevent stigma and mitigate its consequences.

Rigney et al.⁴ describe significant progress in the general public awareness of lung cancer; 94% of the 2018 sample reported familiarity with the disease (increased from 82.5% 10 y earlier). This finding can likely be attributed to the dedicated efforts of lung cancer advocates and advocacy organizations who have allocated significant time, energy, and resources to increase the visibility of individuals at-risk and those diagnosed with lung cancer.⁵ Increased media attention dedicated to lung cancer⁶ has also likely contributed to the heightened public awareness. Another promising finding is exhibited by the large shift in the number of oncologists (36% in 2008, 67% in 2018) who noted adequate treatment options for metastatic lung cancer. This finding reflects significant advances in treatment accompanied by focused education efforts aimed at medical providers. Perhaps this trajectory reflects “the end of nihilism” in relation to oncologists’ perceptions of lung cancer treatment and may help to curtail fatalistic beliefs associated with lung cancer among the general public and those at risk or diagnosed with the disease.^7,8 However, despite the increasing optimism of oncology providers, the actual treatment rates of patients with metastatic lung cancer have shown limited improvement^9,10 in recent years, with continued treatment inequities by socioeconomic status.¹¹ Coordinated efforts are needed to continue the dissemination and implementation of U.S. Food and Drug Administration-approved treatments in the real world of lung cancer care.

Rigney et al.⁴ show that, unfortunately, the substantially higher levels of lung cancer awareness and treatment have not been accompanied by correspondingly lower levels of lung cancer stigma. In 2018, 60.3% of the general public respondents agreed (somewhat or completely) with the statement, “Lung cancer patients are at least partially to blame for their illness,” representing a consistent perception of 2008 respondents (55.7% agreed). Furthermore, in the contemporary survey, 67.8% of oncologists agreed with the statement, “There is a stigma associated with lung cancer,” compared with 60.2% a decade earlier. Reports from the 2018 cohort of patients with lung cancer are particularly impactful, with a statistically significant higher percentage recognizing lung cancer stigma (72.1%, up from 54.5%), personally experiencing blame from strangers and acquaintances (52.4%, up from 31.4%), and feeling less supported by family and friends (25.5%, up from 10.5%). The study authors acknowledge the unintended consequences of aggressive tobacco control messaging in potentially increasing blame and reducing empathy for patients with lung cancer. There has also been increased focus on addressing stigma in both patient-focused¹² and professional forums. For example, Figure 1 illustrates a steady uptick in professional publications addressing lung cancer stigma. Perhaps greater recognition of lung cancer stigma is a step in the right direction toward acknowledging its presence as the “elephant in the room”¹³ of lung cancer care and preparing to tackle this issue and its consequences more directly.

Figure 1.

The number of publications in PubMed containing the terms “lung cancer” and “stigma” (all fields) from 2008 to 2019.

Studies reporting the deleterious health impacts of lung cancer stigma have steadily accumulated over the past decade, underscoring the urgent need for effective stigma-reduction interventions.³ Lung cancer stigma is a complex phenomenon with multiple levels of influence, including the patient, clinician, and society. Encouraging data from our group and others demonstrate initial feasibility of patient-focused interventions in reducing stigma (H. A. Hamann, University of Arizona, unpublished data).¹⁴ Targeting health care providers is also a promising strategy for reducing stigma, particularly since most oncologists agreed that stigma is associated with lung cancer, and our previous work has found that 48% of patients with lung cancer report stigmatizing interactions with their health care providers.¹⁵ Banerjee et al.¹⁶ have developed an empathic communication skills module targeting physicians and other clinicians who treat patients with lung cancer. Preliminary findings demonstrate that the training was well-received and generally builds clinicians’ confidence in discussing smoking behavior with greater empathy in patient consultations. These findings should catalyze the development and testing of multilevel stigma-reduction interventions—coordinated efforts to target multiple levels of influence simultaneously—that are likely to produce a more profound and comprehensive impact on stigma than single-level interventions.^3,17

Although studies focused on patient- and provider-level interventions are promising, considerable effort and resources are needed to continue investigating and enacting society-focused interventions. Stigma is increasingly seen as an unintended consequence of effective tobacco control policies and programs; efforts are underway to change the discourse around smoking and media campaigns away from fear, shame, and blame toward greater engagement of vulnerable populations, recognition of nicotine addiction, and the benefits of quitting smoking.^18–20 Advocacy organizations also play a central role in developing and implementing large-scale societal interventions to mitigate lung cancer stigma. While treatment-related discoveries have brought greater attention to the value of lung cancer research for the broader cancer community, dedicated advocates and advocacy organizations have been tackling some of the most complex challenges. These include efforts to raise awareness and facilitate the implementation of lung cancer screening, support education and training to improve treatment decision-making, and confront the brick wall of lung cancer stigma that impedes achieving the best potential outcomes. Previous investigations have found that disease-related stigma can be reduced when advocates present patient narratives that illustrate a “human face” of the disease, broaden the public’s understanding of causal factors, and demonstrate shared emotions and aspirations between patient and nonpatient groups.²¹ These techniques may also encourage more patients to participate in advocacy by showing that others share their experiences, concerns, and humanity. Societal stigma noted in the Rigney study might plausibly be reduced by using personal contact (e.g., highlighting patients’ stories on television or social media platforms) as part of the comprehensive, multilevel stigma-reducing interventions that move beyond education or awareness alone.²² Future work is needed to establish the impact of such media campaigns on societal attitudes and behaviors. Interventionists could also learn from stigma-reduction efforts for other diseases, such as breast cancer and human immunodeficiency virus (HIV), which focused on highlighting treatability, along with emphasizing education, community engagement, and presenting patient narratives.^21,23

The authors acknowledge limitations of their study, including important differences in the demographics of the two samples. The 2018 cohorts of the general public and patients with lung cancer included more people who never smoked than the 2008 respondents, and the 2018 general public cohort was also younger than in 2008. The relatively small proportions of patients with lung cancer and oncologists within the overall sample may also limit the generalizability of findings. Despite the strength of multiple administrations 10 years apart, survey questions did not have the benefit of rigorous psychometric testing to establish validity parameters, and longitudinal analyses are needed to determine changes in stigma over time. Recent work has provided more rigor to the patient-reported measurement of lung cancer stigma,^24,25 and future efforts should focus on standardizing the metrics for provider- and population-level assessments of lung cancer stigma.

Despite limitations, the Rigney et al.⁴ study offers valuable insight into the trajectory of lung cancer perceptions from patients, oncologists, and the general public. The article highlights improvements in lung cancer awareness and care, while also illustrating the need to address the continuing burden of stigma. Lung cancer stigma is a regrettable, yet unfortunately common, challenge across the cancer care continuum. However, the rising tide of data and improved outcomes generate hope that creates a unique opportunity to make fundamental changes in how society views lung cancer. By banding together in recognizing and addressing lung cancer stigma, we can confront this challenge, share support and empathy for all individuals at increased risk or diagnosed with lung cancer, and leverage the surge of optimism throughout the lung cancer community to end stigma and further reduce the burden of lung cancer.