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S. Sinclair

Moderator of

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    O25 - Stigma and Nihilism (ID 139)

    • Event: WCLC 2013
    • Type: Oral Abstract Session
    • Track: Nurses
    • Presentations: 6
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      O25.01 - Reliability of and Correlates with a Measure of Lung Cancer Stigma in Norwegian Patients Who Underwent Lung Cancer Surgery (ID 2017)

      16:15 - 16:25  |  Author(s): T. Oksholm, T. Rustoen, C. Miaskowski, S. Paul, J. Cataldo, J. Kongerud

      • Abstract
      • Presentation
      • Slides

      Background
      In HIV, cancer, and other diseases, stigma is known to have a negative impact on patient outcomes. Regardless of smoking status, lung cancer patients feel stigmatized because their disease is strongly associated with smoking. In addition, higher levels of lung cancer stigma (LCS) are associated with higher levels of depression and poorer quality of life (QOL). Previous studies have measured LCS in heterogeneous samples of patients at various stages of their disease and treatment. The purpose of this study was to evaluate LCS levels in a homogenous sample of patients 5 months after lung cancer surgery and to identify correlates of LCS.

      Methods
      Patients were recruited from three university hospitals in Norway. They completed a number of self-report questionnaires and the Cataldo Lung Cancer Stigma Scale (CLCSS). The CLCSS is a 31-item scale with each item rated on a 4-point Likert scale (i.e., strongly disagree to strongly agree). Descriptive statistics were used to present demographic and clinical characteristics. Reliability of the CLCSS was assessed using Cronbach’s alpha. Multiple regression analysis was done to identify characteristics associated with higher levels of LCS.

      Results
      Findings from this study provide data on the first time use of the CLCSS in a Norwegian sample of patients with lung cancer. Cronbach's alpha for the total CLCSS score was 0.95. The sample consisted of 121 (57.1%) men and 91 (42.9%) women who had a mean age of 66.1 years (SD=8.3, range 30 to 87). The mean stigma score was 44.0 (SD=13.8) with a range of 31 to 109 (a higher score, indicates higher level of stigma). Bivariate analysis of demographic and clinical characteristics revealed that patients with a higher level of stigma were younger (r = -.18, p =.01), more likely to live in a small town compared to rural areas (p=.04), had smoked until the time of surgery (p=.008), and had higher levels of depression (r = .24, p˂.001). Marital status was included in the multivariate analysis, because it approached significance in the bivariate analysis (p=.07). In the multivariate analysis, marital status (p=.002) and depression (p=.006) remained significant. The final multivariate model explained 13.5% of the variance in stigma scores. Marital status and depression symptom scores uniquely explained 3.6% and 4.6% of the variance of stigma, respectively. Patients who were married and patients who reported higher depression scores reported higher stigma scores.

      Conclusion
      The CLCSS is a valid measure of stigma in Norwegian patients with lung cancer. The majority of the patients (97%) reported stigma scores below 75.7, the mean score obtained in a United States sample. However, 3% of the sample had a stigma score of >75.7. In a Norwegian sample of lung cancer patients, being married and having a higher mean score on the Center for Epidemiological Studies-Depression Scale (i.e., 27.3 (SD=13.4)) were associated with higher LCS.

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      O25.02 - The Social Stigma of Lung Cancer: Death Anxiety and Health Beliefs as Antecedent Variables (ID 2015)

      16:25 - 16:35  |  Author(s): T. Frew, V. Knott

      • Abstract
      • Presentation
      • Slides

      Background
      Lung cancer patients in Australia report a profound experience of stigma. Therapeutic nihilism, differences in chemotherapy treatment options compared to other cancers, and the onset controllability of the disease are some of the contributing factors to the stigma and its effects on the patient, such as poor psychosocial and quality of life outcomes. This is the first known study to investigate the constructs underlying the community’s views on lung cancer through the lens of a prominent social stigma model. This model explores three domains of stigma; enforcement of social norms, avoidance of disease and exploitation of the stigmatised group. Health Locus of Control Theory and Terror Management Theory explore the role of health beliefs and death anxiety as antecedent variables to the social stigma of lung cancer.

      Methods
      A total of 211 university students (males = 56, females = 155) (64% undertaking a health degree) completed an online survey containing the Cataldo Lung Cancer Stigma Scale (CLCSS), the Death Anxiety Inventory (DAI) and the Internal and Chance subscales of the Multidimensional Health Locus of Control scale (MHLC). Approximately 65% of participants were 18-25 years of age and “never smokers”. Approximately 40% had current or previous contact with a person suffering lung cancer.

      Results
      The underlying structure of the CLCSS was investigated using principal axis factoring with varimax rotation. Four factors accounted for 61% of variance in lung cancer stigma. To test the hypothesis that the fear of death and health beliefs respectively account for a portion of variance in lung cancer stigma, a hierarchical multiple regression analysis (MRA) was employed. On step 1, demographic variables, smoking status, family smoking history and contact with lung cancer accounted for a significant 10% of the variance in lung cancer stigma, R[2 ]=.10, F(7, 201) = 3.03, p =.005. Entering death anxiety and health beliefs respectively at step two explained an additional 4% variance in lung cancer stigma, ∆R[2 ]=.14, ∆F(3, 198) = 3.16, p =.001. A combined effect of this magnitude can be considered “medium” (f [2] = .16). Smoking status (sr[2] = .03) and fear of death (sr[2] = .03) were significant predictors of lung cancer stigma. Health beliefs were non-significant predictors.

      Conclusion
      A lung cancer patient is likely to evoke emotions associated with a fear of death for community members who are high on death anxiety. This result aligns with the social stigma model; empathy for the patient is replaced with avoidance of the diseased person. This has implications for media and research representations which focus on the high mortality rate and the “ugly” nature of the disease. The 60% variance in social stigma explained by the CLCSS conceptually aligns with domains of lung cancer stigma identified in the theoretical model. However, for the remaining variance, health beliefs were non-significant predictors of stigmatising norms against lung cancer patients. This suggests the moral dimensions underpinning the social stigma of lung cancer may warrant further investigation, particularly in relation to smoking behaviours.

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      O25.03 - The Unique Contribution of Lung Cancer Stigma to Patient Quality of Life (ID 2639)

      16:35 - 16:45  |  Author(s): C.G. Brown-Johnson, J. Brodsky, J.K. Cataldo

      • Abstract
      • Presentation
      • Slides

      Background
      Lung cancer is associated with greater levels of psychological distress than any other cancer. Anxiety and depression are associated with diminished QOL for lung cancer patients, but do not explain the total variance in QOL. Lung cancer stigma (LCS) may explain some of the additional variance in QOL. LCS is a perceived stigma resulting from negative perceptions about the relationship between smoking and lung cancer. This study’s theoretical framework is the Lung Cancer Stigma Model (LCSM), a patient-centered model that includes precursors, perception and responses to LCS. LCS, according to LCSM, is characterized by diagnosis and connections to tobacco exposure and smoking stigma; experiences of discrimination, isolation or shame; and responses ranging from increased symptom burden to Stigma Resistance (SR), defined as “opposition to the imposition of … stereotypes by others” (Thoits, 2011)and shown to positively correlate with self-esteem, empowerment and QOL. Study aims and hypotheses were to: 1) Investigate the relationship of LCS with anxiety, depression and QOL; 2) Explore whether LCS has a unique contribution to the explanation of QOL after controlling for significant covariates (i.e., sex, age); and 3) Compare whether study variables vary by smoking status.

      Methods
      This was a descriptive, cross-sectional study (N=149). An online survey of lung cancer patients recruited from cancer information and support websites included demographic questions, the Cataldo Lung Cancer Stigma Scale, the Spielberger State Anxiety Questionnaire, the CES-D, and the Quality of Life Inventory.

      Results
      Data from primarily Caucasian female participants with a history of smoking demonstrated strong negative associations among anxiety, depression, LCS and QOL, regardless of smoking status; this confirmed previous findings that LCS is positively correlated with anxiety and depression and negatively correlated with QOL. A final hierarchical multiple regression with revealed an overall model explaining 71.5% of the total variance of QOL (F~5,143~=71.61, p<.001). After controlling for significant covariates, anxiety, and depression, LCS provided a small but significant unique contribution to the explanation of variance in QOL (1.2%; p=.015). Furthermore, results substantiate previous findings of no difference in these relationships by smoking status. Both ever and never smokers’ experiences are similar with respect to anxiety, depression, LCS and QOL.

      Conclusion
      Because lung cancer is widely viewed as a smoker’s disease, patients who have never smoked often experience the same stigmatization as smokers, characterized by a feeling imparted from others that one’s disease was self-inflicted. This investigation explored this experience of LCS and validated previous findings linking QOL and LCS. LCS provides unique explanatory contribution to the understanding of QOL for lung cancer patients. Therefore, providers should consider not only typical psychosocial aspects of the diagnosis, but also patient experience of LCS. Related, LCS literature suggests a gap in the psychosocial care of lung cancer patients; no stigma reduction intervention is currently available. Providers might encourage their patients to engage in potential stigma reduction behaviors that may positively impact QOL: 1) self-educate about their diagnosis, 2) critically evaluate their treatment plans, 3) attend support groups, and 4) advocate against stigma.

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      O25.04 - Lung Cancer Stigma, Anxiety, Depression and Symptom Severity (ID 1690)

      16:45 - 16:55  |  Author(s): J.K. Cataldo

      • Abstract
      • Presentation
      • Slides

      Background
      Lung cancer survivors experience more physical and psychosocial problems for a longer period of time than survivors of other cancers. Whether they have ever smoked or not, lung cancer patients feel stigmatized because their disease is strongly associated with smoking. In our previous work, lung cancer stigma (LCS) was a significant predictor of increased depression and decreased quality of life (QOL). With an increased number of lung cancer survivors and a dearth of information on all perspectives of their health and QOL, additional research is needed to understand not only the associations among LCS and psychosocial factors, but also associations among LCS and physical symptom burden. This study was designed to investigate the relationship between LCS, anxiety, depression and physical symptom severity.

      Methods
      This study employed a cross-sectional, correlational design with recruitment of patients from online lung cancer websites. LCS, anxiety, depression and physical symptoms were measured by patient self-report using validated scales via the Internet. Hierarchical multiple regression was performed to investigate the individual contributions of LCS, anxiety, and depression to symptom severity.

      Results
      One hundred and forty-four participants ranged in age from 23 to 79 years (mean age=56.7 years); 93% were Caucasian, 79% were current or former smokers, and 74% were female. There were strong positive relationships between LCS and anxiety (r=0.413, p<.001); depression (r=0.559, p<.001); and total lung cancer symptom severity (r= 0.483, p<.001). Although small, LCS provided a unique and significant explanation of the variance in symptom severity beyond that of age, anxiety, and depression, by 1.3% (p<.05).

      Conclusion
      Because LCS is associated with both psychosocial and physical patient outcomes, research is needed to develop interventions to assist patients to manage LCS Some evidence suggests that LCS is a hindrance to help-seeking behavior and prevents early detection and treatment and may keep patients from reporting distressing symptoms. A significant number of smokers report feeling unworthy of treatment. Patients are frequently reluctant to report respiratory symptoms when they are smokers, a behavior clearly related to the feelings of shame and guilt. This reluctance is a consequence of general supposition that lung cancer is a self-inflicted disease. Because lung cancer is widely viewed as a smoker’s disease, those who have never smoked often experience the same stigmatization: a feeling that their disease was self-inflicted. Although the prognostic outlook for lung cancer patients is changing, clinicians know that lung cancer has one of the poorer prognoses of all human malignancies and that might unintentionally limit communication, treatment options, and symptom management. Future research is needed to elucidate the mechanisms that underlie lung cancer stigma; longitudinal investigations of LCS and patient outcomes are needed to understand causal relationships; and development of effective interventions to decrease both perceived and projected stigma are essential.

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      O25.05 - Stigma and nihilism in lung cancer: the perspective of Australian health professionals and consumers (ID 2653)

      16:55 - 17:05  |  Author(s): S. Sinclair, S. Chambers, D. O'Connell, P. Youl, S. Occhipinti, P. Baade, J. Aitken, G. Garvey, P. Valery, H. Zorbas, J. Dunn, E. King

      • Abstract
      • Presentation
      • Slides

      Background
      It has been proposed that stigma and nihilism surrounding lung cancer may influence lung cancer outcomes. A clear understanding of the impact of lung cancer related stigma and nihilism from the perspectives of health professionals and consumers will assist in informing best practice lung cancer care and health promotion messages in Australia. As part of a national lung cancer program, Cancer Australia commissioned Cancer Council Queensland, in partnership with Griffith University, to undertake a three-phase research project on stigma and nihilism about lung cancer in the Australian context.

      Methods
      Phase 1: A systematic literature review examined the evidence on the influence of stigma and nihilism on lung cancer patterns of care; patients' psychosocial and quality of life (QOL) outcomes; and how this may link to public health programs. Phase 2: The perspectives of health professionals on the impact of stigma and nihilism on diagnosis and disease management were investigated. Semi-structured interviews and a Delphi process with 31 key informants developed a consensus view, which was then tested with 323 health professionals in a national online survey. Phase 3: The perspectives of lung cancer patients and carers on the effects of stigma and nihilism on their cancer experience were investigated. Qualitative interviews were undertaken with 17 patients and 11 carers followed by a cross-sectional survey with 147 lung cancer patients in QLD and NSW.

      Results
      Systematic review: Stigma relating to lung cancer was reported by both patients and health professionals and was related to poorer QOL and higher psychological distress in patients. Empirical explorations of nihilism were not evident. Qualitative evidence from patients’ perspectives suggested that public health programs contribute to stigma about lung cancer. Health professionals’ perspectives: Health-related stigma and the need for positive messaging about lung cancer and smoking cessation were priorities. Geographical barriers to access and a lack of rural/regional services were described. Barriers for Aboriginal and Torres Strait Islander people included fear of dying away from community and poor cancer knowledge. Patient and carer perspectives: Qualitative data were consistently indicative of stigma amongst patients due to perceived personal responsibility in the smoking-lung cancer relationship and perceived links between lung cancer and negative outcomes. Quantitative data revealed high levels of psychological distress but low help seeking; health-related stigma was significantly related to poorer psychological and QOL outcomes.

      Conclusion
      Health-related stigma has negative impacts on people affected by lung cancer in Australia and may contribute to poorer psychological health and QOL outcomes. The research helps to build the evidence about factors influencing lung outcomes in Australia. It provides an important foundation for further research and the development of strategies to ameliorate the effects of stigma on patients and carers.

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      O25.06 - Electromagnetic Navigation Bronchoscopy directed pleural tattoo to aid surgical resection of Peripheral Pulmonary Lesion (ID 1738)

      17:05 - 17:15  |  Author(s): J.H. Tay, M. Larobina, P. Russell, L. Irving, D. Steinfort

      • Abstract
      • Presentation
      • Slides

      Background
      Limited (wedge) resection of pulmonary lesions is frequently performed as a diagnostic/therapeutic procedure. Some lesions may be difficult to locate thoracoscopically and conversion to open thoracotomy or incomplete resection are potential limitations to this approach. Multiple methods have been described to aid Video-assisted thoracoscopic surgical (VATS) wedge resection of pulmonary nodules including hookwire localization, percutaneous tattoo or intra-operative ultrasound. We report on our experience using Electromagnetic Navigational (EMN) bronchoscopic dye marking of small subpleural lesions to assist wedge resection.

      Methods
      Six patients planned for VATS resection of a peripheral pulmonary lesion underwent pre-operative bronchoscopy. Electromagnetic navigation was utilized to accurately guide a 25-gauge needle to within/adjacent to the lesion for resection and 1mL of methylene blue or indigo carmine was injected under fluoroscopic vision.

      Results
      Six patients underwent bronchoscopic marking of peripheral pulmonary lesions. Navigation to lesions was successful in all six patients. Surgery was performed within 24 hours of bronchoscopic marking. Pleural staining by dye was visible thoracoscopically in all six lesions either adjacent to or overlying the lesion. All lesions were fully excised with wedge resection. Pathologic examination confirmed accuracy of dye staining and established the diagnosis of malignancy.

      Conclusion
      EMN bronchoscopic dye marking of peripheral lesions is feasible, and is not compromised by complications associated with percutaneous marking procedures. Further experience is required but early findings suggest this method may have utility in aiding minimally invasive resection of small subpleural lesions.

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Author of

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    O25 - Stigma and Nihilism (ID 139)

    • Event: WCLC 2013
    • Type: Oral Abstract Session
    • Track: Nurses
    • Presentations: 1
    • +

      O25.05 - Stigma and nihilism in lung cancer: the perspective of Australian health professionals and consumers (ID 2653)

      16:55 - 17:05  |  Author(s): S. Sinclair

      • Abstract
      • Presentation
      • Slides

      Background
      It has been proposed that stigma and nihilism surrounding lung cancer may influence lung cancer outcomes. A clear understanding of the impact of lung cancer related stigma and nihilism from the perspectives of health professionals and consumers will assist in informing best practice lung cancer care and health promotion messages in Australia. As part of a national lung cancer program, Cancer Australia commissioned Cancer Council Queensland, in partnership with Griffith University, to undertake a three-phase research project on stigma and nihilism about lung cancer in the Australian context.

      Methods
      Phase 1: A systematic literature review examined the evidence on the influence of stigma and nihilism on lung cancer patterns of care; patients' psychosocial and quality of life (QOL) outcomes; and how this may link to public health programs. Phase 2: The perspectives of health professionals on the impact of stigma and nihilism on diagnosis and disease management were investigated. Semi-structured interviews and a Delphi process with 31 key informants developed a consensus view, which was then tested with 323 health professionals in a national online survey. Phase 3: The perspectives of lung cancer patients and carers on the effects of stigma and nihilism on their cancer experience were investigated. Qualitative interviews were undertaken with 17 patients and 11 carers followed by a cross-sectional survey with 147 lung cancer patients in QLD and NSW.

      Results
      Systematic review: Stigma relating to lung cancer was reported by both patients and health professionals and was related to poorer QOL and higher psychological distress in patients. Empirical explorations of nihilism were not evident. Qualitative evidence from patients’ perspectives suggested that public health programs contribute to stigma about lung cancer. Health professionals’ perspectives: Health-related stigma and the need for positive messaging about lung cancer and smoking cessation were priorities. Geographical barriers to access and a lack of rural/regional services were described. Barriers for Aboriginal and Torres Strait Islander people included fear of dying away from community and poor cancer knowledge. Patient and carer perspectives: Qualitative data were consistently indicative of stigma amongst patients due to perceived personal responsibility in the smoking-lung cancer relationship and perceived links between lung cancer and negative outcomes. Quantitative data revealed high levels of psychological distress but low help seeking; health-related stigma was significantly related to poorer psychological and QOL outcomes.

      Conclusion
      Health-related stigma has negative impacts on people affected by lung cancer in Australia and may contribute to poorer psychological health and QOL outcomes. The research helps to build the evidence about factors influencing lung outcomes in Australia. It provides an important foundation for further research and the development of strategies to ameliorate the effects of stigma on patients and carers.

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    P2.20 - Poster Session 2 - Early Detection and Screening (ID 173)

    • Event: WCLC 2013
    • Type: Poster Session
    • Track: Imaging, Staging & Screening
    • Presentations: 1
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      P2.20-008 - Investigating symptoms of lung cancer: an evidence-based guide for general practitioners (ID 2632)

      09:30 - 09:30  |  Author(s): S. Sinclair

      • Abstract

      Background
      Early diagnosis and referral to specialist treatment are critical factors in the management of lung cancer. Survival is improved when lung cancer is diagnosed at an early stage and the patient is referred to a multidisciplinary specialist lung cancer team for diagnosis, staging and treatment planning. However, as symptoms can be non-specific and often present similarly to other chronic health issues, an early diagnosis of lung cancer may be missed. Patients with symptoms of lung cancer are likely to present to their general practitioner (GP). Therefore, it is important to enhance awareness of the risk factors, signs and symptoms of lung cancer, and provide GPs with the most recent evidence to facilitate timely and effective assessment and appropriate referrals. Cancer Australia commissioned Monash University (MU) to develop an evidence-based guide for GPs (the Guide), and to develop strategies for promoting uptake of the Guide.

      Methods
      An Expert Advisory Panel (EAP) was established to oversee development of the Guide, using the ADAPTE framework for guideline adaptation. Following a search of the literature to identify potentially relevant guidelines and shortlisting using the Appraisal of Guidelines for Research and Evaluation instrument (AGREE), three international guidelines (UK, NZGG, USA) were selected to inform development of the GP Guide. MU conducted interviews with GPs to assess the feasibility of incorporating the Guide into a computerised decision support tool for the GP setting. An evidence-based, multifaceted approach to promoting the Guide and supporting uptake of best practice cancer care within the general practice setting is ongoing, in consultation with a Project Working Group. The approach includes development and implementation of an Active Learning Module (ALM) and workshops for primary care providers and organisations.

      Results
      The Guide includes 24 recommendations focusing on key topics including: risk factors and symptoms of lung cancer; appropriate investigations in primary care; and effective referral to a specialist linked to a lung cancer multidisciplinary team and services. The Guide was published on the Cancer Australia website and disseminated to GPs throughout Australia. The feasibility assessment found that GPs’ consultation styles did not support additional online ‘pop-up’ reminders, preferring to access the Guide external to patient consultations. Incorporation of the Guide into an appropriate format is ongoing. The ALM provides a structured learning activity in an online, interactive format, providing further detail and context to using the Guide in the primary care setting. The ALM includes case-based learning, literature for further reading, and reflection and reinforcing activities. Workshops for GPs have been held to promote and support implementation of the Guide, including strategies to adopt the Guide’s recommendations in practice. Train-the-Trainer workshops have commenced with primary care providers. Evaluation of the uptake of the Guide into clinical practice is currently unavailable.

      Conclusion
      A new evidence-based guide is available to support GPs to assess symptoms that may be lung cancer, to undertake appropriate investigations, and to support rapid referral into the cancer care pathway. The evidence-based, multifaceted implementation strategy supports the translation of the evidence into best practice cancer care.

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    P2.24 - Poster Session 2 - Supportive Care (ID 157)

    • Event: WCLC 2013
    • Type: Poster Session
    • Track: Supportive Care
    • Presentations: 1
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      P2.24-043 - Developing an optimal best practice model of care for the management of lung cancer in Australia: a national approach (ID 2598)

      09:30 - 09:30  |  Author(s): S. Sinclair

      • Abstract

      Background
      In 2007, lung cancer was the leading cause of cancer-related mortality and morbidity in Australia for both men and women. Only 14% of those diagnosed with lung cancer survive five years beyond their diagnosis. People living in rural areas, those from lower socio-economic status or from certain cultural and linguistic backgrounds have poorer outcomes. Factors contributing to differences in survival and outcomes are varied. Cancer Australia is developing a best practice model of care for the management of lung cancer that has national relevance and can be implemented locally, with the aim of achieving consistency in approach and improving lung cancer outcomes. This abstract describes how the evidence base has been built to inform the model of care.

      Methods
      A systematic review of international and national literature on patterns and models of care for lung cancer informed themes explored through qualitative and quantitative research. A tiered approach to data collection included: (i) mapping of lung cancer services across Australia; (ii) health service consultation through interviews and site visits; and (iii) consumer consultation through a national survey and targeted interviews. Findings were presented and discussed at a national workshop with clinical leaders, consumers, researchers and service delivery experts to review and define principles and elements of best practice care.

      Results
      The patterns of care literature for lung cancer identified variations in time to diagnosis, access to active treatment, re-treatment and palliative care. Service delivery themes identified through the review and research included multidisciplinary care, specialist involvement in diagnosis and treatment, care coordination, early integration of palliative care, uptake of guidelines and quality measures, involvement of primary care and consideration of supportive care needs. Lung cancer service mapping identified 192 services across Australia providing some elements of lung cancer care. Approximately two-thirds were public and one third private. Multidisciplinary teams were identified in 58 services (30%), the majority in metropolitan locations (n=41, 71%). Consumer consultation identified variations in time to first specialist appointment (two weeks to two months), definitive diagnosis (two weeks to three months); and treatment (one week to two months). Consumers identified that improvements could be made in the way information about lung cancer is communicated across all stages of lung cancer. Health service consultation highlighted challenges and best practice approaches along with a range of systemic issues that influence how care is delivered. Challenges included streamlining a complex diagnostic pathway, managing multidisciplinary teams that include cancer and non-cancer specialists, early referral to palliative care, coordinating care, involvement of primary care, and a lack of standard guidelines for follow-up care. Best practice examples were identified across the diagnostic and treatment pathway. Results informed a set of national principles including: patient-centred care; timely diagnosis and staging; multidisciplinary care; appropriate treatment and supportive care; coordinated care; and collection and monitoring of data.

      Conclusion
      This research identified gaps and variations in the delivery of lung cancer care and has built the evidence base to inform the development of best practice approaches to support the consistent diagnosis and management of lung cancer in Australia.