lung cancer and stigma
TRANSCRIPT
Lung Cancer and Stigma
Joan Schiller, MD
Stigma
• A strong lack of respect for a person or a group of people
or a bad opinion of them because they have done
something society does not approve of
Cambridge Dictionary
• A mark of disgrace associated with a particular
circumstance, quality, or person.
Siri
The Stigma of Lung Cancer
• Is it real? Does it happen? How can it be
measured?
• Why does it happen?
• What are the consequences?
• Can it be reduced?
The Lung Cancer Project is a movement to identify, understand, and
remove stigma and other barriers faced by people with lung cancer – so
everyone receives the care they deserve.
Are Lung Cancer Patients Stigmatized?
Our Partners
Participants1778 started
Explicit Attitudes About Cancer
Descriptive (“are”)
Normative
(“ought to”)
Knowledge About Cancer
Factual Statements
(agree/disagree on 6-point scale)
IAT
Stereotypes
Attitudes
Explicit
(Conscious)
The study was online at http://www.thelungcancerproject.org
Implicit
(Unconscious)
Average income range: $10K-$100K
(1,105)
1,778 participants
(median age=50)
1079 females
632 males
67 not id’d
677 had lived or taken care of a cancer
patient
White(1362)
Non-white(387)
Highschool
Somecollege
Collegedegree
Post-grad
440429
416
478
HCP(142)Non-HCP(1605)
Demographics - 2012
Cancerdiagnosis(243)
78 lung cancer
patients
Descriptive
People with __ cancer are…
• ashamed about their disease
• embarrassed to tell others about their disease
• feel that their own behavior contributed to their disease
• likely to die from their disease within a few years
• hopeful about their future
Normative
In my opinion, people with __ cancer ought to be…
• ashamed about their disease
• embarrassed to tell others about their disease
• feel that their own behavior contributed to their disease
• likely to die from their disease within a few years
• hopeful about their future
Explicit (Conscious) AssociationsResponders were asked to rate agreement on a six-point scale relative to lung and breast cancer
1= Strongly disagree, 2= moderately disagree, 3= slightly disagree
4= slightly agree, 5= moderately agree, 6= strongly agree
EXPLICIT RESULTS - 2012
Number of Participants with Explicit (A) Normative
Attitudes Towards BC; and (B) Normative attitudes
Towards LC
“In my opinion, people with __ cancer ought to be…”
6 = Strongly agree, 5 = moderately agree, 4 = Slightly agree,
3 = slightly disagree, 2 =moderately disagree; 1 = Strongly disagree
Attitude Negativity
1 16 6
Number of Participants with Explicit (A) Descriptive
Attitudes Towards BC and (B) Descriptive Towards LC
‘People with __ cancer are…”
6 = Strongly agree, 5 = moderately agree, 4 = Slightly agree,
3 = slightly disagree, 2 =moderately disagree; 1 = Strongly disagree
Attitude Negativity
1 16 6
IMPLICIT ATTITUDES (UNCONSCIOUS ATTITUDES)
Its all about reaction time
C D
Press E Press E
Press E Press EPress I
Press IPress I
Press I
C D
Press E Press E
Press E Press EPress I
Press IPress I
Press I
The four trial types in the Hope/Despair IAT
C D
Press E Press E
Press E Press EPress I
Press IPress I
Press I
The four trial types in the Hope/Despair IAT
Press E Press E
Press E Press EPress I
Press IPress I
Press I
The four trial types in the Hope/Despair IAT
Press E Press E
Press E Press EPress I
Press IPress I
Press I
IMPLICIT RESULTS - 2012
Number of Participants with Implicit
Associations Toward LC and Good/Bad
Number of Participants with Implicit
Associations Toward LC and Hope/Despair
WHY ARE PATIENTS WITH LUNG CANCER STIGMATIZED?
Why the Stigma?
“They did it to themselves”
• The vast majority of smokers started before they knew better
– The military gave away cigarettes FREE to servicemen in WWII, the Korean war, and the Vietnam war
– Today, most smokers started in their teenage years – when they are young, rebellious, defiant, immortal, and very susceptible to tobacco advertising
• The majority of smokers have tried to quit…. But can’t
– Nicotine is ADDICTING!
• About half of all lung cancers occur in people who can’t quit…. Because they already have
• Let’s face it... We have a double standard
– We don’t judge other lifestyle - related health issues so harshly (heart disease, diabetes, skiing accidents, etc)
The Media and Unintended Consequences
Decreasing Smoking but Increasing Stigma?
Hard- hitting Anti-tobacco Campaigns
Riley, AMA J Ethics, 2017
• Restrictions on smoking in the workplace; tobacco taxation,
increased access to evidence based treatment, and public health
national media campaigns -- effective in reducing smoking (from
43% 50 years ago to 18% now)
• “Hard –hitting” campaigns (those with fear arousing messages)
have been shown to be the most effective type of antitobacco mass-
reach health communications
• Unintended consequence stigmatizing those with smoking related
illnesses
Negative Ads
CONSEQUENCES OF STIGMA ON LUNG CANCER PATIENTS?
Breast Cancer
($13.7K / Death)
Lung Cancer
($1.9K / Death)
https://report.nih.gov/info_disease_burden.aspx
NIH Research, Condition and Disease Categorization (RCDC): Funding vs US Deaths
Cause or Effect?
Lung Cancer Stigma Predicts Timing of Medical
Help-Seeking BehaviorCarter-Harris et al
Oncol Nurs Forum. 2014 May ; 41(3): E203–E210.
• Purpose/Objectives—To examine relationships among demographic
variables, healthcare system distrust, lung cancer stigma, smoking
status, and timing of medical help–seeking behavior in individuals
with symptoms suggestive of lung cancer after controlling for
ethnicity, socioeconomic status, and social desirability.
• Design—Descriptive, cross-sectional, correlational study.
• Setting—Outpatient oncology clinics in Louisville, KY.
• Sample—94 patients diagnosed in the past three weeks to six years
with all stages of lung cancer.
• Methods—Self-report, written survey packets followed by a
semistructured interview to assess symptoms and timing
characteristics of practice-identified patients with lung cancer.
Lung Cancer Stigma Predicts Timing of Medical
Help-Seeking BehaviorCarter-Harris et al
Oncol Nurs Forum. 2014 May ; 41(3): E203–E210.
Variable DF F p
Perceived
financial status
2 0.83 2.17 0.12
Annual income 2 0.01 0.04 0.96
Ethnicity 1 0.29 0.75 0.39
Social
desirability
1 0.08 0.2 0.65
Smoking status 2 0.43 1.12 0.33
Healthcare
system distrust
1 1.44 3.77 0.06
Lung cancer
stigma
1 4.75 12.44 < 0.01
Residual (error) 82 0.382 – –
Symptoms of stigma
• Guilt, regret, perceived blame, demoralization,
• Associated with delayed diagnosis, poor quality of life, and
poor patient –clinician communication
• May results in reduced treatment adherence and heightened
psychosocial distress.
Stigma Among Patients with Lung Cancer:A Patient Reported Measurement Model
Hamann, Psycho-Oncology, 2013
• Results:
– All groups: perceived(felt) stigma
– Internalized (self) stigma more common among current
and recently quit smokers
Hamann, Psycho-Oncology, 2013
Stigma Among Patients with Lung Cancer:
A Patient Reported Measurement Model
Two forms of adaption:
– Maladaptive (eg decreased disclosure)
– Adaptive (eg increased advocacy)
Stigma Among Patients with Lung Cancer:A Patient Reported Measurement Model
Hamann, Psycho-Oncology, 2013
TRANSLATED:
GET MAD AND DO
SOMETHING ABOUT IT!!!!
Smokers/Never Smokers
• Both smokers and never-smokers (“guilt by association”) report experiencing stigma
– First question asked of nearly every lung cancer patient: “Did you smoke?”
• Tension between smokers and never-smokers
• Smokers:
– it shouldn’t matter if you smoked;
– no one deserves lung cancer
– by highlighting that never smokers can get lung cancer, further stigmatizing smokers with lung cancer
• Non-smokers: we get “tainted “ with the stigma associated with smoking induced lung cancer
– big discrepancy between support services offered to breast cancer patients compared to lung cancer patients
– showing the public that even never smokers can get lung cancer may put a less stigmatizing face on the disease.
WHY DOES BEING STIGMATIZED MATTER?
Relationship Between Implicit Attitudes and
Systemic Treatment of Lung Cancer Ma, World Lung Cancer Conference 2015
• Compared rates of drug treatment for lung cancer by state with
patients’ implicit associations about lung cancer by state
• Cancer patients’ implicit attitudes toward lung cancer were
significantly associated with state-level lung cancer drug-treatment
rates.
– In states where cancer patients tended to implicitly link lung cancer with
the term “despair” and “shameful”, the lung cancer drug-treatment rates
were lower.
– Stronger negative implicit attitudes toward lung cancer and implicit
stereotypes linking smoking with lung cancer is associated with lower
lung cancer drug treatment rate
Effects of Stigma on Lung Cancer Screening
Heimann, et al
Journal of Thoracic Oncology Vol. 13 No. 8: 1062-1075
• Compared with uptake of other types of cancer screening at the
same implementation stage, the rate of low dose CT (LDCT
screening of eligible patients remains very low (approximately 4%).
• Only 10% of screening-eligible patients have engaged in a
discussion about the option of screening with their health care
clinician.
• In qualitative interviews of screening-eligible individuals, patients
reported stigma as a significant hindrance to lung cancer screening;
patients described concerns about being judged and blamed by
health care clinicians as limiting their engaging in screening.
The Stigma of Lung Cancer: Does it Affect
Patient Care from Primary Care Physicians?
T. R. Wassenaar; J. C. Eickhoff; D. R. Jarzemsky; S. S. Smith; M. L. Larson; J. H. Schiller
University of Wisconsin School of Medicine and Public Health, Madison, WI.
Methods
• A survey of 1132 general internists and family practice physicians in the state of Wisconsin between April 1, 2005 and October 31, 2005. The survey consisted of a cover letter and one of 4 case scenarios
– 672 physicians returned their surveys for a response rate of 59.4%.
• Half of the surveys were about a 53 year old woman with a new diagnosis of Stage I breast cancer and the other half were about a 53 year old woman with a new diagnosis of a Stage I lung cancer.
– The surveys were identical in everyway with the exception of the tumor type.
– They were further subdivided into patients with both breast and lung cancer that do or do not use tobacco.
Methods
– Physicians were randomized into one of four groups based on patient cancer type and smoking status in the following clinical scenarios:
• a female smoker/ lung cancer scenario;
• a female nonsmoker/ lung cancer scenario;
• a female smoker/ breast cancer scenario; and
• a female nonsmoker/ breast cancer scenario.
– Physicians’ referral patterns, length of follow up, and knowledge about the benefits of chemotherapy were compared across the four groups.
Percentage of physicians who felt
that patients with early stage
disease would have improved
survival with chemotherapy.
Percentage of physicians who felt
that patients with metastatic
disease would have improved
survival with chemotherapy.
Results
Results
Number of patients with advanced stage breast or lung cancer and either
good (>2) and poor (</=2) performance status who would be referred to a
medical oncologist
p < 0.001
Results
Patient Follow up:Percentage of physicians who stated that they would continue to follow their patients with severe pain every 1-2 weeks.
Results
Influence of Tobacco use:
• No significant differences were observed between any of the smoking and non-smoking groups:
– All smokers vs. all non-smokers
– Breast smokers vs. lung smokers
– Breast non-smokers vs. lung non-smokers
– Breast non-smokers vs. lung smokers
– Breast smokers vs. lung non-smokers.
Summary
– Physicians were less likely to refer patients with advanced non-small lung cancer to an oncologist than patients with breast cancer (p<0.001).
– More physicians knew that chemotherapy improved survival in advanced breast cancer than in advanced lung cancer (p=.0145).
– Comparison of responses for the advanced breast cancer versus advanced lung cancer scenarios showed that breast cancer patients were more likely to be referred for further therapy whereas lung cancer patients were more often referred only for symptom control (p=0.0092).
– Patient’s smoking status does not appear to influence the care decisions of primary care physicians.
SO WHAT CAN WE DO TO ADDRESS THE STIGMA OF LUNG CANCER?
What can we do to address the stigma of lung
cancer?
Lessons learned from other diseases
• Breast cancer was once
vehemently stigmatized
• Awareness was elevated by
strategies such as screening
initiatives, educational
campaigns, and popularization of
the pink ribbon as a symbol of
hope and solidarity
Other lessons from HIV/AIDS and mental
illness
• Coordinated and persistent advocacy to educate and enhance awareness
• Increase awareness that the disease is treatable and patients deserve respect
• Use media, social media, digital marketing as a forum for patients and advocates to speak out
• Share stories of experiences and hope
Multilevel Opportunities to Address Lung Cancer
Stigma across the Cancer Control ContinuumHamann, H, J Thoracic Onc, 13:1062-1075
Multilevel Opportunities to Address Lung Cancer
Stigma across the Cancer Control Continuum (con)Hamann, H, J Thoracic Onc, 13:1062-1075
YES!!!
CAN WE DO IT?
Modal income:
<$50K (44%)
2,072 participants
(median age=53)
57% females
43% males
590 had lived or taken care of a cancer
patient
White (993)
Non-white(389)
Highschool or
less
Somecollege
Collegedegree
Post-grad
430
273
416
264
HCP (160)
Non-HCP(1174)
Demographics - 2019
Cancerdiagnosis(223)No cancer(1160)
68 lung cancer patients
Self
Rep
ort
“Peo
ple
wit
h L
un
g/B
reas
t C
ance
r ar
e…”
Ashamed Embarrassed Hopeful
2019
2012
Explicit Results- 2012 vs 2019
P <0.001 P <0.001 P <0.001
IAT
Sco
re
Good/Bad Hope/Despair Shame/Suitable
Mean IAT Scores2012 vs 2019
2019
2012
P <0.001 P = 0.003P = 0.067
0
5
10
15
20
25
30
Strong Moderate Slight
None
Slight Moderate Strong
Lung Cancer + Hope /
Breast Cancer + Despair
Lung Cancer + Despair /
Breast Cancer + Hope
Proportion of IAT scores by Association Strength:
Hope/Despair IAT2012 vs 2019
Pro
port
ion o
f IA
T s
core
s
0
5
10
15
20
25
30
35
Strong Moderate Slight
None
Slight Moderate Strong
Lung Cancer + Suitable /
Breast Cancer + Shameful
Lung Cancer + Shameful /
Breast Cancer + Suitable
Pro
port
ion o
f IA
T s
core
sProportion of IAT Scores by Association Strength:
Shame/Suitable IAT2012 vs 2019
0
5
10
15
20
25
30
Strong Moderate Slight
None
Slight Moderate Strong
Lung Cancer + Good /
Breast Cancer + Bad
Lung Cancer + Bad /
Breast Cancer + Good
Proportion of IAT Scores by Association Strength:
Good/Bad IAT2012 vs 2019
Pro
port
ion o
f IA
T s
core
s
• As in 2012, people associate lung cancer with negativity more than they do breast cancer. • Both with regard to self-reports and implicit beliefs: more
embarrassment, more shame, and less hope with regard to lung cancer than breast cancer.
• However, results indicate substantial decreases in both implicit and explicit negativity related to lung cancer. • People associate less shame and embarrassment with lung cancer
and associate more hope with it as compared to seven years ago.
• Of note, no changes in attitudes and beliefs regarding breast cancer were observed between 2012 – 2019.• This suggests that beliefs about cancer more generally are not
changing, but that they are specific to lung cancer.
SUMMARY
Why the Improvement???Some possibilities:
• Better treatments More optimism More research Better
treatments More optimism, etc.
• Advocacy!
– Puts a human face on the disease
– Promotes public awareness
• More survivors to advocate
• More “socially acceptable” faces
– AIDS: Children, mothers who contracted the virus through blood
transfusions
– Lung cancer: Young never-smoking women
Lung Cancer Stigma
• Is real and can be measured
Lung Cancer Stigma
• Is real and can be measured
• Multiple factors
– “They did it to themselves”
– Unintended consequences of negative, hard-hitting
anti-tobacco ads
Lung Cancer Stigma
• Is real and can be measured
• Multiple factors
– “They did it to themselves”
– Unintended consequences of negative, hard-hitting
anti-tobacco ads
• Consequences:
– Psychosocial distress
– Delay in seeking care
– Associated with lower drug treatment rates
– Reluctance to get screened
– Impacts never smokers
– Lower quality of care?
Lung Cancer Stigma
• Is real and can be measured
• Multiple factors
– “They did it to themselves”
– Unintended consequences of negative, hard-hitting
anti-tobacco ads
• Consequences:
– Psychosocial distress
– Delay in seeking care
– Associated with lower drug treatment rates
– Reluctance to get screened
– Impacts never smokers
– Lower quality of care?
• It can be reduced
Lung Cancer Stigma
• Is real and can be measured
• Multiple factors
– “They did it to themselves”
– Unintended consequences of negative, hard-hitting
anti-tobacco ads
• Consequences:
– Psychosocial distress
– Delay in seeking care
– Associated with lower drug treatment rates
– Reluctance to get screened
– Impacts never smokers
– Lower quality of care?
• It can be reduced
• More research needed to determine interventions
THANK YOU FOR INVITING ME!