Lung Cancer Stigma: Causes, Prevalence, Impacts, and Development of a Lung Cancer

Stigma Conceptual Model to Guide Public Health Interventions

Andrea Borondy KittsMay 1, 2014

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Agenda

• Guiding Questions• Background• Research Methods• Stigma • Lung Cancer Stigma Prevalence• Lung Cancer Stigma Outcomes• Lung Cancer Stigma Conceptual Model• Public Heath Practice Implications• Public Health Policy Implications• Public Health Research Implications• Summary

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Guiding Questions

• What are the causes of lung cancer stigma?• What is the prevalence of lung cancer stigma

in people with lung cancer, caregivers, health care providers, and the general population?

• How does lung cancer stigma impact health outcomes for people with lung cancer?

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Lung Cancer is the 2nd Leading Cause of Death in the US

• Lung cancer is the leading cause of cancer deaths in both men and women in the US and worldwide– 160,000 die each year, more than

breast, colon, prostate and pancreatic cancer combined

– 5 year survival at 16.8% essentially unchanged since 1975

• Disease burden is highest in older adults– Average age of diagnosis is 70– 2 of 3 diagnosed are 65 and older– 72.4% of deaths are in those 65

and older

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Stigma due to Strong Link with Smoking

People with lung cancer blamed and/or blame themselves for their diseasehttp://cancergeek.wordpress.com/2013/11/16/cancer-the-harsh-story-of-lung-cancer-vs-breast-cancer/

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Methods • Literature Search – PubMed and PMC

– Lung cancer AND stigma– Lung cancer AND stigma AND smokers

• > 1000 abstracts/titles reviewed– 30 full text reviewed 26 additional full text from citations– 20 studies retained criteria:

• Data on prevalence of lung cancer stigma in a population of interest• Data on lung cancer stigma impacts on people with lung cancer • Data and/or description on tobacco control policies and stigmatization of smokers• Description/data on causal factors for lung cancer stigma

• Unpublished studies– American Lung Association Research on the Stigma of Lung Cancer– ASCO 2013 Poster on Assessment of Explicit and Implicit Attitudes towards Lung

Cancer, Relative to Breast Cancer– Presentation “Stigma Against Lung Cancer: What Can We Learn From Research on

HIV/AIDS”• Lung Cancer Statistics from American Cancer Society, SEER and WHO websites

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Stigma• “an attribute that links a person to an

undesirable stereotype leading other people to reduce the bearer from a whole and usual person to a tainted, discounted one”

Goffman E. Stigma: Notes on the Management of Spoiled Identity. New York: Simon and Schuster; 1963

• Health Related Stigma– Perceived stigma with personal experience of

exclusion, rejection, blame or devaluation as a result of anticipation of being judged adversely

Cataldo JK, Slaughter R, Jahan TM, Pongquan VL, Hwang WJ. Measuring stigma in people with lung cancer: psychometric testing of the Cataldo lung cancer stigma scale. Oncol Nurs Forum 2011;38(1):46–54. doi:10.1188/11.ONF.E46-E54.

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Tobacco Control Policies Stigmatize Smokers

Tobacco Industry Response to 1964 Surgeon General Report:deny addictive nature of smoking

portray smoking as lifestyle choice

Tobacco control policies de-normalized smoking and stigmatized smokers smoking as environmental health issue (2nd hand smoke) legislation of smoke free public areas and work places portraying smoking as a personal choice leading to a horrible death

Stuber J, Galea S, Link BG. Smoking and the emergence of a stigmatized social status. Social Science in Medicine. 2008;67(3):420–430 .

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Deadliness of disease and images of horrible death

Lack of survivors and advocates = less research $’s

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AIDS/HIV Stigma Experience and Implications for Lung Cancer Stigma

HIV/AIDS Stigma driven by • Transmissibility - It can spread from person to person• It affects unpopular groups—and people tend to hold those groups responsible for

getting the disease• When first discovered , it was untreatable and invariably fatal

Perhaps the single biggest intervention against HIV stigma has been the widely publicized advances in HIV treatment.

Stigma Against Lung Cancer Likely to be Greater When:• Perceived as severe and untreatable• Person is perceived as being responsible for their condition (e.g., smokers)

Lung Cancer Screening resulting in improved survivability is key opportunity to fight stigma

Wayne T. Steward, “Stigma Against Lung Cancer: What Can We Learn From Research on HIV/AIDS” (Presentation given at National Lung Cancer Partnership Lung Cancer Advocate Summit, September 20, 2013).

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Lung Cancer Stigma Prevalence 95% of people with lung cancer experience stigma22 – 70% of the population expresses explicit stigma53 – 77% of the population expresses implicit stigmaStigma is consistent across all demographics including health care providers

Study Ref number Title Type Study Populations Study size Stigma Comments

1 6

Hamman et.al. Stigma among patients with lung cancer: a patient-reported measurement model

semi-structured interviews

patients with lung cancer 42

95% experienced felt/ percieved stigma

50% experienced stigma from medical professionals

2 21

Market Research Bureau; American Lung Association Research on the Stigma of Lung Cancer on-line survey

US general adult population 1005

22% explicitely blamed lung cancer patients for causing their disease; 53 to 77% implicit blame for lung cancer patients

implicit blame percentages derived from responses to smoking behavior and sympathy for non-smoker questions

3 22Ipsos MORI; Global perceptions of lung cancer on-line survey

representative sample US adults 1000

22% indicated less sympathy for lung cancer patients vs patients with other types of cancer

lead in statement to survey question stated lung cancer is mainly caused by smoking

4 23,24

Schiller et.al.; ASCO 2013 Poster Session The Assessment of Explicit and Implicit Attitudes Toward Lung Cancer Relative to Breast Cancer on-line survey 1778

667 caregivers, 243 patients, 142 health care providers, 864 general public

70% negative explicit attitudes towards LC / 74% negative implicit attitudes towards LC

no significant differences across the different groups

5 15

Marlow et.al.; Variation in blame attributions across different cancer types

face-to-face interviews 1620

population representative british women

70% considered lung cancer patients to be at least partially to blame for their cancer

older women less likely to attribute blame / women with higher education levels more likely to attribute blame

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Lung Cancer Stigma has Adverse Impacts on Depressive Symptoms, Quality of Life and Physical Symptoms

• People with lung cancer experience dual burdens of their disease and stigma

• Lung cancer stigma is an independent factor – 2.1% impact on quality of life (QOL)– 3% of the impact on depressive symptoms– 1.3% increase in severity of symptoms

• Depression impacts QOL and QOL prognostic factor for survival (ref below)

Ediebah DE, Coens C, Zikos E.,Qinten C., Ringash J., King MT., Schmucker von Kich J., Gotay C., Greimel E., Fletchner H., Weis J., Reeve BB., Smit EF., Taphoorn MJ., Bottomley A.Does change in health-related quality of life score predict survival? Analysis of EORTC 08975 lung cancer trial.Br J Cancer. 2014 Apr 17. doi: 10.1038/bjc.2014.208. (Epub ahead of print)

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Summary Lung CancerStigma ImpactStudies Evaluated

Study Ref number Title Type Study Populations Study size Stigma Comments

1 6

Hamman et.al. Stigma among patients with lung cancer: a patient-reported measurement model

semi-structured interviews

people with lung cancer 42

98% reported stigma related consequences: 69% emotional resignation;50% distress/depression; 48% decreased disclosure to others;48% less engagement in care; 48% an interest in advocacy; 69% increased involvement in treatment

results from individual interviews used to develop a measurement model, then validated with 23 additional participants in 5 focus groups

2 8

Cataldo et.al. Lung cancer stigma, depression, and quality of life among ever and never smokers

on-line questionnaire - self report measuring tools stigma, depression and QOL

people with self report lung cancer diagnosis 192

study showed a positive relationship between stigma and depression and an inverse relationship between stigma and QOL. Lung cancer stigma had a significant contribution of 2.1% (p<0.001) to QOL after accounting for effects of smoking status, age, gender, & depression

No significant differences in scores for stigma, depression or QOL between never smokers and ever smokers (p>0.05). 55% of participants met the criteria for depression. Sample younger, more Caucasian, more educated and higher SES than general lung cancer population

3 27

Gonzalez et.al. Depression in lung cancer patients: the role of perceived stigma

demographic questionnaire & self report measuring "tools" for perceived stigma & psychosocial variables. Medical chart review

people with lung cancer receiving chemotherapy 95

perceived stigma accounted for 3% of depressive symptomology (p=0.043) after accounting for diagnosis of past MDD, time since LC diagnosis, social support, avoidant coping, & dysfunctional attitudes.

No demographic variables were significantly associated with depressive symptomology (p>0.05). 38% of participants met the criteria for clinically significant depressive symptomology; study homogeneous relative to race/ethnicity (93% Caucasian)

4 28

Cataldo et.al.Lung cancer stigma, anxiety, depression, and symptom severity

on-line questionnaire - self report measuring tools stigma, anxiety, depression and symptom severity

people with lung cancer 144

study showed strong positive relationships between lung cancer stigma and anxiety (r=0.413, p< 0.001); depression (r=0.559, p< 0.001); and total lung cancer symptom severity (r=0.483, p<0.001). Lung cancer stigma accounted for 1.3% (p<0.05) of variance in symptom severity after correcting for age, anxiety,& depression

physical symptoms evalutated ==> appetite, fatigue, cough, dyspnea,pain). Participants not representative of general lung cancer population - younger, mostly female, 93% Caucasian.

5 29

Tod et.al. Overcoming delay in the diagnosis of lung cancer: a qualitative study Focus groups (6)

25 general public; 14 HCP w/lung cancer expertise 39

stigma noted as reason for delay in lung cancer diagnosis. Afraid "would not be treated well, would be held responsible for their illness, or be judged"

study conducted in England, may not be representative of US views

6 5

Chapple et.al. Stigma, shame, and blame experienced by patients with lung cancer: qualitative study

face-to-face interviews

people with lung cancer in the United Kingdom 45

patients felt stigmatized leading to adverse effects on interactions with family, friends, medical providers. Also stigma led to delay in seeking treatment for symptoms. Stigma was attributed to smoking and dirt and dying in an unpleasant way

study conducted in England, may not be representative of US views

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Tobacco Control Policies

Decreased Smoking Prevalence

Reduced LC Incidence

Reduced LC Advocacy

Reduced LC Research

Low Survivability

LUNG CANCER (LC) STIGMA CONCEPTUAL MODEL

Andrea Borondy Kitts April 2014

Increased LC Stigma

Adverse LC patient impacts

Stigmatized smokers

Tobacco control policies effective at decreasing smoking prevalence however stigmatized smokers and people with lung cancer. Reduction in incidence of lung cancer offset by low survivability due to stigma resulting in negatively reinforcing loops of increased stigma, adverse patient impacts, less advocacy and reduced research.

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Public Health Practice Implications• Improved training of primary care medical community in lung

cancer symptom recognition especially for– Smokers– Former smokers– People with COPD

• Stigma awareness training for medical providers treating people with lung cancer

• Integration of psychosocial care early into medical care – consider palliative care integration as approach

• Public health messaging and education on lung cancer statistics, addictiveness of smoking and lung cancer causes other than smoking – General public– Medical and lung cancer communities

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Public Health Policy ImplicationsImprove lung cancer survivability via USPSTF recommended low dose CT (LDCT) lung cancer screening. Improved survival leads to positively reinforcing loops of reduced stigma, increased advocacy, increased research, increased survival

Need CMS to cover LDCT lung cancer screening.

Continuation of tobacco control policies should add lung cancer screening as a teachable moment for smoking cessation. Also, switch focus from negative portrayal of smokers and focus on tobacco and e-cigarette industry actions targeting addiction & marketing to youths

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Tobacco & E-cigarette Marketing To Youth

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Public Health Research Implications• Additional studies to evaluate lung cancer stigma in people with lung

cancer including the impact of stigma on health outcomes and quality of life– Current studies homogeneous and not representative of lung cancer population– Stigma measurement tools recently developed; need additional validation– Few quantitative studies on stigma impacts on health outcomes – Studies should address older adults with co-morbid conditions

• Studies to evaluate interventions to reduce stigma e.g. integration of palliative care in early medical care– stigma reduction– health outcomes

• Studies to design and evaluate coping strategies for dealing with stigma as part of smoking cessation programs for people with lung cancer

• Studies to validate the lung cancer stigma and lung cancer survival conceptual models

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Summary

• Lung cancer is the leading cause of cancer deaths; largest disease burden in older adults

• People with lung cancer experience dual burdens of their disease and lung cancer stigma– Up to 95% of people with lung cancer perceive stigma against them– Up to 77% of the population expresses stigma against people with lung cancer– Lung cancer stigma increases depression and physical symptoms and reduces QOL for

people with lung cancer • Tobacco control programs stigmatizing smokers significant contributor to lung

cancer stigma• Public health interventions recommended to reduce stigma and improve

survivability – raise awareness and educate general population and medical community on lung cancer

statistics– Incorporate psychosocial care early into medical care for people with lung cancer– CMS to cover LDCT lung cancer screening– Incorporate lung cancer screening into tobacco control programs– Change tobacco control focus from blaming smokers to raising awareness of

addictiveness of smoking and tobacco and e-cigarette industry marketing

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Acknowledgements

• Thank you to Katherine Pruitt and the American Lung Association for sharing the results of their lung cancer research study.