Transcript STIGMA IN CHRONIC HCV DISEASE

STIGMA IN CHRONIC HCV DISEASE
Tarek Hassanein, M.D.
Professor of Clinical Medicine and Surgery
Chief of Hepatology
Director of Liver Transplantation
University of California San Diego
Prevalence of HCV Infection
in the US
Anti-HCV
3.9 Million
HCV RNA +
3.2 Million
Genotype
HANES III data: 1988-1994; Alter, et al., NEJM, 1999
1
(71%)
2/3
(22%)
Estimated HCV Prevalence in Select
Populations: US
Incarcerated
~310,000 (15%)
HIV-infected
~300,000 (30%)
Living below poverty level
~940,000 (2.4%)
IVDUs
~300,000 (80%-90%)
Alcoholics
~240,000 (11%-36%)
Homeless
~175,000 (22%)
Veterans
~280,000 (8%)
Children (6-19 yrs)
~100,000 (0.1%)
HCV
High Risk Population
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Intravenous drug users
Intranasal drug users
Alcoholics
Mentally ill individuals
Incarcerated individuals
Homeless
Living below poverty level
Prevalence by Age Group
NHAMES III
8
6
Current
4
2
6-29 y
35-40 y
45-49 y
0
>50 y
Chronic HCV
Infection: Having HCV virus in the
blood
 Disease: Biological event
characterized by pathology and/or
functional changes of body organs
or systems
 Illness: A subjective experience of
devalued changes in well-being

Crisis Of HCV Illness

Patients experience
 Separation
from family and friends
 Loss of self-esteem and identity
 Changes in appearance and bodily
functions
 Feelings of anger, guilt and anxiety
 Belief in an uncertain future
The Reaction
Cognitive appraisal of the significance of
infection
 Develop adaptive tasks
 Develop coping skills
 Restore state of equilibrium and normality

Moos & Schaefer’s Model of Coping 1984
Factors Influencing The
Reaction
Background and personal characteristics
 Illness-related factors
 Features of the physical and sociocultural environment
 Education and Awareness

Moos & Schaefer’s Model of Coping 1984
Effects of Infection with HCV
Contagiousness
 Social isolation
 Altered role function
 Stigmatization
 Loss of control
 Uncertainty
 Anxiety

Stigmatization
Defined as,
“ Attitudes expressed by a dominant
group which views a collection of
others as socially unacceptable”
 In HCV,
“Being negatively judged by others
as a result of the patient’s HCV
infection”

Themes of Stigmatization
Society’s Association of HCV with:
 HIV/AIDS
 Promiscuity
 Intravenous Drug Use
Stigmatization in HCV
Patients with HCV infection face negative
stereotyping and stigmatization, as
patients infected with HIV
 HCV infected patients face higher degrees
of stigmatization than individuals with
other chronic diseases

Stigma:
“A Mark of Shame or Discredit”
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Feeling stigmatized (>80%) (even by Physicians)
Did not tell people
Reduced support network
Affected perception of other people’s belief about
them
Feeling dirty
Acted as a barrier to seek information, care and
treatment
Stigmatization in HCV

Results in:
 Isolation
and estrangement from family and
society
 Anxiety
 Poor coping with the disease
 Problems in professional lives
 Barrier to treatment
Stigmatization in HCV
Stigmatized patients experience more
problems than non-stigmatized patients
 In Healthcare Setting
60% vs 40%
p<0.01

In Work environment
p<0.01

44% vs 1%
In Familial relationships48% vs 10%
p<0.01
Effects of Stigmatization
Stigmat.
No Stigmat.
P
Negative Outlook
40%
15%
<0.01
Sense of loss of control
60%
19%
<0.01
Failure to cope
48%
14%
<0.01
Anxiety
82%
56%
<0.01
Depression
65%
28%
<0.01
Correlation Between Severity of
Stigmatization and the Hospital
Anxiety Depression (HAD) and
Sickness Impact Profile (SIP)
No Stigmatization
Stigmatization
PATIENTS (N)
110
147
WOMEN (%)
31
43
<0.05
45.8
44.0
0.12
43.7-47.9
42.7-45.3
BLOOD PRODUCTS
10
15
0.24
IV DRUG USE
54
55
0.82
HIGH SCHOOL DEGREE
47
35
0.06
SOME COLLEGE
32
38
0.3
COLLEGE DEGREE
12
12
0.92
MASTERS OR DOCTORAL DEGREE
9
16
0.09
UNEMPLOYED
5
3
0.1
DISABLED
6
3
0.09
PART-TIME EMPLOYMENT
9
5
0.17
FULL-TIME EMPLOYMENT
70
79
0.1
HOMEMAKER
4
5
0.94
RETIRED
6
5
0.58
AGE YEARS (%)
95% CI
P Value
MODE OF ACQUISITION (%)
EDUCATION (%)
PROFESSIONAL BACKGROUND (%)
Correlation Between Severity of Stigmatization
and the Hospital Anxiety Depression (HAD) and
Sickness Impact Profile (SIP)
Zickmund S et al. J Gen Intern Med 2003; 18(10): 835-844
Correlation Between Severity of Stigmatization
and the Hospital Anxiety Depression (HAD) and
Sickness Impact Profile (SIP)
Zickmund S et al. J Gen Intern Med 2003; 18(10): 835-844
Correlation Between Severity of Stigmatization
and the Hospital Anxiety Depression (HAD) and
Sickness Impact Profile (SIP)
Zickmund S et al. J Gen Intern Med 2003; 18(10): 835-844
Concerns of Newly Diagnosed
HCV Patient
Disease progression
 Premature death
 Infecting family members
 Side effects of treatment
 Others

27%
19%
13%
11%
se
a
se
pr
og
re
ss
0
Liv
e
rt
ra
m
rd
is e
r
as
e
an
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ns
pla
nt
at
ion
ve
rc
en
t
ch
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ot
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rs
plo
ym
Liv
e
of
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le
ing
sty
St
igm
ao
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Lo
ss
Lif
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t
In
f
ion
Pr
em
at
ur
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In
ea
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th
t in
gf
am
ily
m
em
Sid
be
ee
rs
ffe
ct
so
ft
re
at
me
nt
Di
% of Patients with Principal Concern
Volunteered Concerns
40
30
20
10
So
cia
l
s ti
Lo
ss
o
rd
ise
rrh
plo
y
me
nt
t
as
e
os
is
ra
ns
pla
n
fe
m
rt
ive
Liv
e
gm
ao
fl
Ci
s
an
ce
r
In
fe
cti
ng
ot
he
r
rc
s
me
mb
er
Liv
e
In
fe
cti
ng
fam
ily
Ranking
Prioritized Concerns
7
6
5
4
3
2
1
0
Self-reported Symptoms
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Experience any symptoms
Experience no symptoms
Not sure
50%
30%
20%
Self-reported Symptoms of HCV
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Tiredness
Nausea
Liver pain
Joint pain/muscle pain
Generally unwell
Jaundice
Sweating
Psychological
Poor concentration
Sleep problems
61%
30%
22%
20%
15%
13%
12%
11%
4%
3%
Prevalence of Depression in HCV
Kraus, et al.
22.4%
Lee, et al.
24%
Dwight, et al.
28%
Yates, et al.
25%
Mood Disorders
DSM-IV
1. Depressive disorders:
Major depression, dysthymia, non-specified depressive disorder
2. Bipolar disorders:
Bipolar I, Bipolar II, cyclothymic, non-specified bipolar disorder
3. Mood disorder due to a general medical condition:
Persistent disturbance in mood as a direct physiological
consequence of a medical condition
4. Substance-induced mood disorder:
Persistent mood disturbance as a direct physiological
consequence of a drug, medication or toxin
Depression
DSM-IV

Definition of major depression:
 > 2 weeks duration
 Depressed mood
 Loss of interest or pleasure
 4 additional symptoms:
–
–
–
–
–

changes in weight or appetite
insomnia, hyperinsomnia
decreased energy, fatigue
feeling of worthlessness or guilt
suicidal ideation
Symptoms not due to effects of a substance, drug,
medication, medical condition or due to bereavement
Depression
National Comorbidity Survey
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17% of Americans experience depression during their
lives
5% of Americans are depressed at any given month
9.5% of Americans suffer from depression in one
year period
Depressed
Mood
Stigma
Symptom
Experience
HCVRelated
Depression
Personality
HCV Therapy
Uncertainty
Depression in HCV
Causes:
 Family history
 Alcohol use
 Abuse of drugs (licit, illicit)
 Medications (interferon)
 Medical illness
 Chronic pain
 Chronic stress
 Stigmatization
HCV
Efficacy of Treatment
(Manns, et al.)
(Manns, et al.)
(Fried, et al.)
Peg-IFN 2a
180g + RBV
1000-1200mg
(Hadziyannis, et al.)
Peg-IFN 2a 180g
+ RBV
1000-1200mg
IFN 2b + RBV
1000-1200mg
Peg-IFN 2b
1.5mg + RBV
800mg
Geno 1
HVL
29%
30%
41%
46%
LVL
45%
73%
56%
61%
Geno 2,3
HVL
77%
76%
74%
78%
LVL
80%
91%
81%
77%
Cirrhosis
41%
44%
43%
50%
Study Group
(LVL) Low Viral Load = HCV RNA ≤ 2,000,000/ml
(HVL) High Viral Load
HCV Treatment
Neuropsychiatric Side Effects
(Manns, et al.)
Peg-IFN 2b
1.5 g/kg
+ RBV 800mg
(Hadziyannis, et al.)
Peg-IFN 2a
180 g/kg
+ RBV
(Fried, et al.)
Peg-IFN 2a
180 g/kg
+ RBV
Depression
31%
24%
21%
Fatigue
64%
48%
54%
Insomnia
40%
33%
37%
Headache
62%
52%
47%
Adverse
Events
Neuropsychiatric Symptoms
associated with Antiviral Therapy
Fatigue:
 Depression:
 Suicide:
 Irritability:
 Anxiety:
 Insomnia:
 Cognitive dysfunction:
 Mania/Psychosis:

39-100%
3-38%
1-2%
20-77%
10-20%
30-40%
2-54%
<1%
Davis et al., 1998; Dieperink et al., 2000; Fontana, 2000; McHutchinson et al., 1998;
Miyaoka et al., 1999; Schaefer et al., 2003; Trask et al., 2000
Peg-IFN α2a + Ribavirin
Depression
800mg 1000-1200mg
24w
24w
800mg 1000-1200mg
48w
48w
Incidence
22%
15%
22%
24%
Treated
11%
10%
11%
15%
Dose
Modification
2%
1%
1%
2%
Discontinuation
2%
1%
1%
2%
Pegasys® 180 g sq qw + Ribavirin
Hadziyannis et al, EASL, 2002
IFN-Induced Depression
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Onset:
Peak:
Decline:
2 – 4 weeks
4 – 12 weeks
After 12 – 24 weeks
Different interferons may precipitate different patterns of
psychiatric symptoms
IFN-Induced
Psychiatric Side Effects
Risk factors:
 Old age
 Duration of IFN treatment
 Dosage of IFN
 History of psychiatric disease
 History of substance abuse
 Current psychologic stressors
Treatment of IFN-induced
Depression in HCV
1.
2.
3.
4.
5.
6.
7.
Anti-depressants
Interferon dose reduction (30% - 50%)
Stop interferon
Psychostimulants
Sedatives
Opiate antagonist
Exercise programs
Antidepressants
Management of Interferon-induced depression:
 Selective Serotonin Reuptake Inhibitors: (SSRI)
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Paroxetine (Paxil)
Citalopram (Celexa)
Fluoxetine (Prozac)
Sertraline (Zoloft)
Others:
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
Bupropion (Wellbutrin)
Venlafaxine (Effexor)
Imipramine (Tofranil)
Management of Depression
Others:
 Treat pre-existing depression before starting combination
therapy
 Frequent monitoring (every 2 weeks for 3 months)
 Early identification of psychiatric symptoms
 Refer to mental health providers
 Encourage attendance and participation in educational programs
and support groups
 Involve family and friends to help in monitoring your patient
General Management of Psychiatric
Issues in HCV Patients
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Identify baseline psychiatric issues
Exclude patients with unstable psychiatric issues who are
in psychiatric treatment
Consult psychiatrist to optimize management of any
psychiatric issues and to confirm psychiatric stability
Start or maintain antidepressants as needed
Encourage counseling and attendance of support groups
Encourage participation of family and friends in patient’s
care
Provide close observation and easy access to you and your
staff and frequent monitoring
Conclusion
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Depression is a major comorbidity in HCV infected patients
Drug induced depression is common with interferon
therapy
Early recognition and appropriate management of
psychiatric symptoms increase adherence and chance of
completing therapy
Interferon-induced depression can be managed by
antidepressants, especially SSRIs
SSRI improves IFN-induced depression within 2-4 weeks
and should be maintained as needed
Patients with depression should not be denied interferon
therapy
Quality of Life
120
100
80
60
40
20
0
Physical
Function
Physical
Disability
Bodily Pain
General
Health
HCV
Vitality
Social
Function
Controls
Emotional
Disability
Mental
Health
SF-36 Health Survey
Components

Physical domains
 Physical
functioning

Mental domains
 Vitality
 Role–physical*
 Social
 Bodily
 Role–emotional*
pain
 General health
functioning
 Mental
health
* ‘Role’ domains refer to the impact of physical or emotional well
being on work or other daily activities
Scores of the SF-36 health survey questionnaire (mean SD) in HCV-positive blood donors
investigated after the medical assessment that followed the diagnosis (group B, n 72)
were lower than HCV-positive blood donors investigated at the time of the diagnosis
(group A, n 17; p 0.05).
Cordoba J et al. Am J of Gastroenterology 2003; 98(1): 226-227
Management of HCV
Required psychosocial support
 Counseling
 Testing
 Public education
 Healthcare education

Priorities of HCV Infected
Patients
Infecting family members
 Development of liver cancer
 Infecting others
 Development of cirrhosis
 Social stigma
 Need for liver transplantation
 Loss of employment

Counseling Strategies for HCV
Infected Patients

Viral disease
 Progression
 Consequences
 Spread
 Treatment
 Side
effects
Psychosocial Effects
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Fear
Panic
Depression
Feelings of negativity
Anxiety about transmission

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Lack of confidence in sexual desirability

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Household
Sexually
Breastfeeding
Affects the enjoyment of sex
Menstruation exacerbated these feelings
Stigmatization in HCV
Open discussion with patients and their
families
 Broad-based education to manage
stereotyping, including healthcare
providers

Overcoming Stigma

Education
 Patient,
family, public, healthcare workers,
practitioners
Provide integrated care of both IDU and
HCV infection services
 Provide HCV services in non-IDU setting
for non-IDU infected patients

HCV Management
HCV
HCV Ab
HCV PCR
Genotype
Liver Biopsy
Psych Status
Personal Habits
Social Issues
Length of Consultation Time and
Satisfaction with Diagnosis
Length of consultation time
Satisfaction Level, n (%)
0-6 min
7-25 min
≥ 26 min
Very dissatisfied/dissatisfied
68 (45)
9 (11)
3 (17)
Neither satisfied nor dissatisfied
55 (36)
29 (34)
2 (11)
Very satisfied/satisfied
28 (19)
46 (55)
13 (73)
Total
151 (100)
84 (100)
18 (100)
HCV Management Team
MD (Evaluation, assessment, treatment
planning)
Clinic Nurse (Rx planning, follow-up)
Social Worker (Rehab, lifestyle changes)
Psychiatrist, Psychologist
Family, Friends, Co-workers
How to Improve Response Rates

Improve
Adherence
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

Organized team
Systematic
approach
Continuous
education
Accessibility
Friendly attitude
Better
Outcome
Thank You