stigma in chronic hcv disease tarek hassanein, m.d. professor of clinical medicine and surgery chief...
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STIGMA IN CHRONIC HCV DISEASE
Tarek Hassanein, M.D.Professor of Clinical Medicine and Surgery
Chief of HepatologyDirector of Liver TransplantationUniversity of California San Diego
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Prevalence of HCV Infection in the US
Anti-HCV
HCV RNA +
Genotype
3.9 Million
3.2 Million
1(71%)
HANES III data: 1988-1994; Alter, et al., NEJM, 1999
2/3(22%)
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Estimated HCV Prevalence in Select Populations: US
IVDUs~300,000 (80%-90%)
Alcoholics~240,000 (11%-36%)
Homeless~175,000 (22%)
Incarcerated~310,000 (15%)
HIV-infected~300,000 (30%)
Living below poverty level~940,000 (2.4%)
Veterans~280,000 (8%)
Children (6-19 yrs)~100,000 (0.1%)
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HCVHigh Risk Population
Intravenous drug users Intranasal drug users Alcoholics Mentally ill individuals Incarcerated individuals Homeless Living below poverty level
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Prevalence by Age Group
0
2
4
6
8
6-29 y 35-40 y 45-49 y >50 y
NHAMES III
Current
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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
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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
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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
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Factors Influencing The Reaction
Background and personal characteristics
Illness-related factors Features of the physical and socio-
cultural environment Education and Awareness
Moos & Schaefer’s Model of Coping 1984
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Effects of Infection with HCV
Contagiousness Social isolation Altered role function Stigmatization Loss of control Uncertainty Anxiety
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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”
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Themes of Stigmatization
Society’s Association of HCV with: HIV/AIDS Promiscuity Intravenous Drug Use
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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
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Stigma: “A Mark of Shame or Discredit”
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
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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
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Stigmatization in HCV
Stigmatized patients experience more problems than non-stigmatized patients
In Healthcare Setting 60% vs 40% p<0.01
In Work environment 44% vs 1% p<0.01
In Familial relationships 48% vs 10% p<0.01
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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
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Correlation Between Severity of Stigmatization and the Hospital Anxiety Depression (HAD) and Sickness Impact Profile (SIP)
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No Stigmatization
Stigmatization P Value
PATIENTS (N) 110 147
WOMEN (%) 31 43 <0.05
AGE YEARS (%) 45.8 44.0 0.12
95% CI 43.7-47.9 42.7-45.3
MODE OF ACQUISITION (%)
BLOOD PRODUCTS 10 15 0.24
IV DRUG USE 54 55 0.82
EDUCATION (%)
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
PROFESSIONAL BACKGROUND (%)
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
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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)
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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)
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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)
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Concerns of Newly Diagnosed HCV Patient
Disease progression 27% Premature death 19% Infecting family members 13% Side effects of treatment 11% Others
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Volunteered Concerns
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Prioritized Concerns
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Self-reported Symptoms
Experience any symptoms 50% Experience no symptoms 30% Not sure 20%
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Self-reported Symptoms of HCV
Tiredness 61% Nausea 30% Liver pain 22% Joint pain/muscle pain 20% Generally unwell 15% Jaundice 13% Sweating 12% Psychological 11% Poor concentration 4% Sleep problems 3%
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Prevalence of Depression in HCV
Kraus, et al. 22.4%
Lee, et al. 24%
Dwight, et al. 28%
Yates, et al. 25%
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Mood DisordersDSM-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
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DepressionDSM-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
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DepressionNational Comorbidity Survey
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
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HCV
Therapy
Symptom Experienc
e
HCV-Related
Depression
Personality
Uncertainty
Stigma
Depressed Mood
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Depression in HCV
Causes: Family history Alcohol use Abuse of drugs (licit, illicit) Medications (interferon) Medical illness Chronic pain Chronic stress Stigmatization
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HCVEfficacy of Treatment
Study Group
(Manns, et al.)
IFN 2b + RBV 1000-1200mg
(Manns, et al.)
Peg-IFN 2b 1.5mg + RBV
800mg
(Fried, et al.) Peg-IFN 2a
180g + RBV 1000-1200mg
(Hadziyannis, et al.) Peg-IFN 2a 180g
+ RBV 1000-1200mg
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%
(LVL) Low Viral Load = HCV RNA ≤ 2,000,000/ml (HVL) High Viral Load
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AdverseEvents
(Manns, et al.)Peg-IFN 2b
1.5 g/kg+ RBV 800mg
(Hadziyannis, et al.)Peg-IFN 2a180 g/kg
+ RBV
(Fried, et al.)Peg-IFN 2a180 g/kg
+ RBV
Depression 31% 24% 21%
Fatigue 64% 48% 54%
Insomnia 40% 33% 37%
Headache 62% 52% 47%
HCV Treatment Neuropsychiatric Side Effects
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Neuropsychiatric Symptoms associated with Antiviral Therapy
Fatigue: 39-100% Depression: 3-38% Suicide: 1-2% Irritability: 20-77% Anxiety: 10-20% Insomnia: 30-40% Cognitive dysfunction:2-54% Mania/Psychosis: <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
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Peg-IFN α2a + RibavirinDepression
800mg24w
1000-1200mg24w
800mg48w
1000-1200mg48w
Incidence 22% 15% 22% 24%
Treated 11% 10% 11% 15%
DoseModification
2% 1% 1% 2%
Discontinuation 2% 1% 1% 2%
Pegasys® 180 g sq qw + Ribavirin
Hadziyannis et al, EASL, 2002
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IFN-Induced Depression
Onset: 2 – 4 weeks Peak: 4 – 12 weeks Decline: After 12 – 24 weeks
Different interferons may precipitate different patterns of psychiatric symptoms
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IFN-InducedPsychiatric Side Effects
Risk factors: Old age Duration of IFN treatment Dosage of IFN History of psychiatric disease History of substance abuse Current psychologic stressors
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Treatment of IFN-induced Depression in HCV
1. Anti-depressants2. Interferon dose reduction (30% - 50%)3. Stop interferon4. Psychostimulants5. Sedatives6. Opiate antagonist7. Exercise programs
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Antidepressants
Management of Interferon-induced depression: Selective Serotonin Reuptake Inhibitors: (SSRI)
Paroxetine (Paxil) Citalopram (Celexa) Fluoxetine (Prozac) Sertraline (Zoloft)
Others: Bupropion (Wellbutrin) Venlafaxine (Effexor) Imipramine (Tofranil)
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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
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General Management of Psychiatric Issues in HCV Patients
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
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Conclusion
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
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Quality of Life
0
20
40
60
80
100
120
PhysicalFunction
PhysicalDisability
Bodily Pain GeneralHealth
Vitality SocialFunction
EmotionalDisability
MentalHealth
HCV Controls
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SF-36 Health Survey Components
Physical domains Physical
functioning Role–physical*
Bodily pain General health
Mental domains Vitality Social
functioning Role–emotional*
Mental health
* ‘Role’ domains refer to the impact of physical or emotional well * ‘Role’ domains refer to the impact of physical or emotional well
being on work or other daily activities being on work or other daily activities
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Cordoba J et al. Am J of Gastroenterology 2003; 98(1): 226-227
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).
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Management of HCV
Required psychosocial support Counseling Testing Public education Healthcare education
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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
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Counseling Strategies for HCV Infected Patients
Viral disease Progression Consequences Spread Treatment Side effects
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Psychosocial Effects Fear Panic Depression Feelings of negativity Anxiety about transmission
Household Sexually Breastfeeding
Lack of confidence in sexual desirability Affects the enjoyment of sex
Menstruation exacerbated these feelings
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Stigmatization in HCV
Open discussion with patients and their families
Broad-based education to manage stereotyping, including healthcare providers
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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
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Personal Habits
HCV Management
HCV Ab
HCV PCR
Genotype
Liver Biopsy
Psych Status
Social Issues
HCV
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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)
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MD (Evaluation, assessment, treatment planning)
Clinic Nurse (Rx planning, follow-up)
Social Worker (Rehab, lifestyle changes)
Psychiatrist, Psychologist
Family, Friends, Co-workers
HCV Management Team
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How to Improve Response Rates
Organized team Systematic
approach Continuous
education Accessibility Friendly attitude
BetterOutcome
ImproveAdherence
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Thank You