Lung Cancer and Stigma

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)

http://www.thelungcancerproject.org/

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

The four trial types in the Hope/Despair IAT

C D

Press E Press E


Press IPress I

Press I

The four trial types in the Hope/Despair IAT

Press E Press E


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


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


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


None


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


None


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


• Multiple factors

– “They did it to themselves”

– Unintended consequences of negative, hard-hitting

anti-tobacco ads

Lung Cancer Stigma





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





anti-tobacco ads

• Consequences:







• It can be reduced

Lung Cancer Stigma





anti-tobacco ads

• Consequences:







• It can be reduced

• More research needed to determine interventions

THANK YOU FOR INVITING ME!

Lung Cancer and Stigma

Documents

Transcript of Lung Cancer and Stigma