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Introduction to the Special Section: The Experience and Impact of Lung Cancer Stigma

      “Did you smoke?”
      Many of us have heard lung cancer patients recount stories of blame and judgment associated with that common question. This example is part of a larger phenomenon of lung cancer stigma, the experience of negative appraisal and devaluation associated with lung cancer.
      • Hamann H.A.
      • Ostroff J.S.
      • Marks E.G.
      • Gerber D.E.
      • Schiller J.H.
      • Lee S.J.C.
      Stigma among patients with lung cancer: a patient-reported measurement model.
      Although the study of stigma has deep roots, only recently has systematic research addressed stigma specifically in the context of lung cancer. Within our larger understanding of psychosocial distress and symptom burden across the lung cancer continuum, it is important to understand the impact of lung cancer stigma and address promising stigma-reducing interventions.
      We are pleased to introduce this Special Section focused on lung cancer stigma. This series begins in the current issue with an article by Hamann et al.
      • Hamann H.A.
      • Ver Hoeve E.S.
      • Carter-Harris L.
      • Studts J.L.
      • Ostroff J.S.
      Multilevel opportunities to address lung cancer stigma across the cancer control continuum.
      evaluating the argument that stigma is a significant barrier to fulfilling the clinical promise of early detection, treatment, and control in lung cancer. Upcoming issues of the Journal of Thoracic Oncology will feature articles by prominent behavioral scientists and clinicians addressing the multilevel impact of lung cancer stigma on patients, caregivers, oncology care clinicians, and the public. Articles will also address stigma across the lung cancer control continuum, from screening and early detection, to treatment and survivorship. Taken together, these contributions provide a more comprehensive focus on the nature and impact of lung cancer stigma, as well as highlight the need for continued interdisciplinary collaboration and advocacy.
      Evidence suggests that lung cancer stigma has multifaceted consequences, including reduced involvement in prevention and early detection efforts, psychosocial impairment, communication difficulties between patients and clinicians, delays in diagnosis and treatment, and reduced funding and public support for lung cancer research and care.
      • Hammett P.
      • Fu S.S.
      • Nelson D.
      • et al.
      A proactive smoking cessation intervention for socioeconomically disadvantaged smokers: the role of smoking-related stigma.
      • Quaife S.L.
      • Marlow L.A.V.
      • McEwen A.
      • Janes S.M.
      • Wardle J.
      Attitudes towards lung cancer screening in socioeconomically deprived and heavy smoking communities: informing screening communication.
      • Carter-Harris L.
      Lung cancer stigma as a barrier to medical help-seeking behavior: Practice implications.
      • Chambers S.K.
      • Dunn J.
      • Occhipinti S.
      • et al.
      A systematic review of the impact of stigma and nihilism on lung cancer outcomes.
      • Tran K.
      • Delicaet K.
      • Tang T.
      • Ashley L.B.
      • Morra D.
      • Abrams H.
      perceptions of lung cancer and potential impacts on funding and patient care: a qualitative study.
      For patients and their caregivers, perceptions of pervasive societal stigma associated with lung cancer may be internalized and drive emotional responses of guilt, regret, and self-blame. Such reactions can limit social interactions and negatively impact discussions with oncology care clinicians about treatment decisions, smoking cessation, supportive care needs, and other aspects of oncology care.
      • Pujol J.L.
      • Mérel J.P.
      • Roth C.
      how preconceptions about lung cancer treatment interact with medical discourse for patients who accept chemotherapy?.
      As we deepen and coalesce this understanding of lung cancer stigma, we have an important opportunity to study and implement multilevel, evidence-based interventions that address these consequences of stigma across the lung cancer control continuum. Researchers are developing and testing promising interventions, including patient decision-making tools that address stigma in the context lung cancer screening, education and counseling to reduce stigma in lung cancer patients and their caregivers, and clinician-focused support and empathic communication training.
      • Carter-Harris L.
      • Comer R.S.
      • Goyal A.
      • et al.
      development and usability testing of a computer-tailored decision support tool for lung cancer screening: study protocol.
      • Chambers S.K.
      • Morris B.A.
      • Clutton S.
      • et al.
      Psychological wellness and health-related stigma: a pilot study of an acceptance-focused cognitive behavioural intervention for people with lung cancer.
      • Brown-Johnson C.G.
      • Berrean B.
      • Cataldo J.K.
      Development and usability evaluation of the mHealth Tool for Lung Cancer (mHealth TLC): a virtual world health game for lung cancer patients.
      Advocacy groups and other professional organizations are addressing lung cancer stigma both directly through public awareness campaigns, and indirectly through messaging about tobacco cessation, lung cancer screening, and advances in treatment and survivorship. These efforts provide important, feasible templates, but more systematic endeavors, opportunities, and resources are needed to expand and sustain stigma-reducing interventions into clinical care settings and widespread use. Although lung cancer is associated with unique elements of stigma, we should consider lessons from addressing stigma in other health domains, including the importance of responding to the evolving needs of diverse patients, families, and communities throughout the intervention development and implementation processes.
      • Pulerwitz J.
      • Michaelis A.
      • Weiss E.
      • Brown L.
      • Mahendra V.
      Reducing HIV-related stigma: lessons learned from Horizons research and programs.
      Effectively responding to the challenge of stigma represents an important element in reducing the burden of lung cancer and improving lung cancer care.

      References

        • Hamann H.A.
        • Ostroff J.S.
        • Marks E.G.
        • Gerber D.E.
        • Schiller J.H.
        • Lee S.J.C.
        Stigma among patients with lung cancer: a patient-reported measurement model.
        Psychooncology. 2014; 23: 81-92
        • Hamann H.A.
        • Ver Hoeve E.S.
        • Carter-Harris L.
        • Studts J.L.
        • Ostroff J.S.
        Multilevel opportunities to address lung cancer stigma across the cancer control continuum.
        J Thorac Oncol. 2018; 13: 1062-1075
        • Hammett P.
        • Fu S.S.
        • Nelson D.
        • et al.
        A proactive smoking cessation intervention for socioeconomically disadvantaged smokers: the role of smoking-related stigma.
        Nicotine Tob Res. 2018; 20: 286-294
        • Quaife S.L.
        • Marlow L.A.V.
        • McEwen A.
        • Janes S.M.
        • Wardle J.
        Attitudes towards lung cancer screening in socioeconomically deprived and heavy smoking communities: informing screening communication.
        Health Expect. 2017; 20: 563-573
        • Carter-Harris L.
        Lung cancer stigma as a barrier to medical help-seeking behavior: Practice implications.
        J Am Assoc Nurse Pract. 2015; 27: 240-245
        • Chambers S.K.
        • Dunn J.
        • Occhipinti S.
        • et al.
        A systematic review of the impact of stigma and nihilism on lung cancer outcomes.
        BMC Cancer. 2012; https://doi.org/10.1186/1471-2407-12-184
        • Tran K.
        • Delicaet K.
        • Tang T.
        • Ashley L.B.
        • Morra D.
        • Abrams H.
        perceptions of lung cancer and potential impacts on funding and patient care: a qualitative study.
        J Cancer Educ. 2015; 30: 62-67
        • Pujol J.L.
        • Mérel J.P.
        • Roth C.
        how preconceptions about lung cancer treatment interact with medical discourse for patients who accept chemotherapy?.
        Psychooncology. 2017; 26: 793-799
        • Carter-Harris L.
        • Comer R.S.
        • Goyal A.
        • et al.
        development and usability testing of a computer-tailored decision support tool for lung cancer screening: study protocol.
        JMIR Res Protoc. 2017; 6: e225
        • Chambers S.K.
        • Morris B.A.
        • Clutton S.
        • et al.
        Psychological wellness and health-related stigma: a pilot study of an acceptance-focused cognitive behavioural intervention for people with lung cancer.
        Eur J Cancer Care (Engl). 2015; 24: 60-70
        • Brown-Johnson C.G.
        • Berrean B.
        • Cataldo J.K.
        Development and usability evaluation of the mHealth Tool for Lung Cancer (mHealth TLC): a virtual world health game for lung cancer patients.
        Patient Educ Couns. 2015; 98: 506-511
        • Pulerwitz J.
        • Michaelis A.
        • Weiss E.
        • Brown L.
        • Mahendra V.
        Reducing HIV-related stigma: lessons learned from Horizons research and programs.
        Public Health Rep. 2010; 125: 272-281

      Linked Article

      • Multilevel Opportunities to Address Lung Cancer Stigma across the Cancer Control Continuum
        Journal of Thoracic OncologyVol. 13Issue 8
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          The public health imperative to reduce the burden of lung cancer has seen unprecedented progress in recent years. Fully realizing the advances in lung cancer treatment and control requires attention to potential barriers in their momentum and implementation. In this analysis, we present and evaluate the argument that stigma is a highly significant barrier to fulfilling the clinical promise of advanced care and reduced lung cancer burden. This evaluation of the stigma of lung cancer is based on a multilevel perspective that incorporates the individual, persons in the individual's immediate environment, the health care system, and the larger societal structure that shapes perceptions and decisions.
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