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

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%)

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%)

HCVHigh Risk Population

Intravenous drug users Intranasal drug users Alcoholics Mentally ill individuals Incarcerated individuals Homeless Living below poverty level

Prevalence by Age Group

0

2

4

6

8

6-29 y 35-40 y 45-49 y >50 y

NHAMES III

Current

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 socio-

cultural 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”

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 44% vs 1% p<0.01

In Familial relationships 48% 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 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

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

Correlation Between Severity of Stigmatization and the Hospital Anxiety Depression (HAD) and Sickness Impact Profile (SIP)

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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Self-reported Symptoms

Experience any symptoms 50% Experience no symptoms 30% Not sure 20%

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%

Prevalence of Depression in HCV

Kraus, et al. 22.4%

Lee, et al. 24%

Dwight, et al. 28%

Yates, et al. 25%

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

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

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

HCV

Therapy

Symptom Experienc

e

HCV-Related

Depression

Personality

Uncertainty

Stigma

Depressed Mood

Depression in HCV

Causes: Family history Alcohol use Abuse of drugs (licit, illicit) Medications (interferon) Medical illness Chronic pain Chronic stress Stigmatization

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

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

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

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

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

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

Treatment of IFN-induced Depression in HCV

1. Anti-depressants2. Interferon dose reduction (30% - 50%)3. Stop interferon4. Psychostimulants5. Sedatives6. Opiate antagonist7. Exercise programs

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)

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

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

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

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PhysicalFunction

PhysicalDisability

Bodily Pain GeneralHealth

Vitality SocialFunction

EmotionalDisability

MentalHealth

HCV Controls

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

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).

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 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

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

Personal Habits

HCV Management

HCV Ab

HCV PCR

Genotype

Liver Biopsy

Psych Status

Social Issues

HCV

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)

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

How to Improve Response Rates

Organized team Systematic

approach Continuous

education Accessibility Friendly attitude

BetterOutcome

ImproveAdherence

Thank You