Presentation summary of my MPH class paper on Lung Cancer Stigma: Causes, Prevalence, Impacts and Development of a Lung Cancer Stigma Model to Guide Public Health Interventions

1. Lung Cancer Stigma: Causes, Prevalence,
Impacts, and Development of a Lung Cancer
Stigma Conceptual Model to Guide Public
Health Interventions
Andrea Borondy Kitts
May 1, 2014

2. 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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3. 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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4. 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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5. Stigma due to Strong Link with Smoking
People with lung cancer blamed and/or blame themselves for their disease
http://cancergeek.wordpress.com/2013/11/16/cancer-the-harsh-story-of-lung-cancer-vs-breast-cancer/
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6. 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• Unpublished studies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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7. 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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8. 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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9. Deadliness of disease and images of horrible death
Lack of survivors and advocates = less research $’s
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10. 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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11. Lung Cancer Stigma Prevalence
95% of people with lung cancer experience stigma
22 – 70% of the population expresses explicit stigma
53 – 77% of the population expresses implicit stigma
Stigma 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 22
Ipsos 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
representati
ve 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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12. 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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13. Summary Lung Cancer
Stigma Impact
Studies Evaluated
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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

14. 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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15. 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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16. Public Health Policy Implications
Improve 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
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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

17. Tobacco & E-cigarette Marketing To
Youth
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18. 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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19. 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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20. Acknowledgements
• Thank you to Katherine Pruitt and the American Lung
Association for sharing the results of their lung
cancer research study.
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