STIGMA IN CHRONIC HCV DISEASE

1
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

2
Prevalence of HCV Infection in the US
Anti-HCV
3.9 Million
HCV RNA
3.2 Million
1 (71)
2/3 (22)
Genotype
HANES III data 1988-1994 Alter, et al., NEJM,
1999
3
Estimated HCV Prevalence in Select Populations US
IVDUs 300,000 (80-90)
Incarcerated 310,000 (15)
Alcoholics 240,000 (11-36)
HIV-infected 300,000 (30)
Living below poverty level 940,000 (2.4)
Homeless 175,000 (22)
Veterans 280,000 (8)
Children (6-19 yrs) 100,000 (0.1)
4
HCVHigh Risk Population

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

5
Prevalence by Age Group
NHAMES III
Current
6
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

7
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

8
The Reaction

• Cognitive appraisal of the significance of
  infection
• Develop adaptive tasks
• Develop coping skills
• Restore state of equilibrium and normality

Moos Schaefers Model of Coping 1984
9
Factors Influencing The Reaction

• Background and personal characteristics
• Illness-related factors
• Features of the physical and socio-cultural
  environment
• Education and Awareness

Moos Schaefers Model of Coping 1984
10
Effects of Infection with HCV

• Contagiousness
• Social isolation
• Altered role function
• Stigmatization
• Loss of control
• Uncertainty
• Anxiety

11
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 patients HCV infection

12
Themes of Stigmatization

• Societys Association of HCV with
• HIV/AIDS
• Promiscuity
• Intravenous Drug Use

13
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

14
Stigma A Mark of Shame or Discredit

• Feeling stigmatized (gt80) (even by Physicians)
• Did not tell people
• Reduced support network
• Affected perception of other peoples belief
  about them
• Feeling dirty
• Acted as a barrier to seek information, care and
  treatment

15
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

16
Stigmatization in HCV

• Stigmatized patients experience more problems
  than non-stigmatized patients
• In Healthcare Setting 60 vs 40 plt0.01
• In Work environment 44 vs 1 plt0.01
• In Familial relationships 48 vs 10 plt0.01

17
Effects of Stigmatization
Stigmat. No Stigmat. P
Negative Outlook 40 15 lt0.01
Sense of loss of control 60 19 lt0.01
Failure to cope 48 14 lt0.01
Anxiety 82 56 lt0.01
Depression 65 28 lt0.01
18
Correlation Between Severity of Stigmatization
and the Hospital Anxiety Depression (HAD) and
Sickness Impact Profile (SIP)
19
No Stigmatization Stigmatization P Value
PATIENTS (N) 110 147
WOMEN () 31 43 lt0.05
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
20
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
21
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
22
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
23
Concerns of Newly Diagnosed HCV Patient

• Disease progression 27
• Premature death 19
• Infecting family members 13
• Side effects of treatment 11
• Others

24
Volunteered Concerns
25
Prioritized Concerns
26
Self-reported Symptoms

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

27
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

28
Prevalence of Depression in HCV
29
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

30
DepressionDSM-IV

• Definition of major depression
• gt 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

31
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

32
Depressed Mood
Stigma
HCV-Related Depression
Symptom Experience
Uncertainty
Personality
HCV Therapy
33
Depression in HCV

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

34
HCVEfficacy of Treatment
35
HCV Treatment Neuropsychiatric Side Effects
36
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 lt1

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
37
Peg-IFN a2a RibavirinDepression
Hadziyannis et al, EASL, 2002
38
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

39
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

40
Treatment of IFN-induced Depression in HCV

1. Anti-depressants
2. Interferon dose reduction (30 - 50)
3. Stop interferon
4. Psychostimulants
5. Sedatives
6. Opiate antagonist
7. Exercise programs

41
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)

42
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

43
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
  patients care
• Provide close observation and easy access to you
  and your staff and frequent monitoring

44
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

45
Quality of Life
46
SF-36 Health Survey Components

• Physical domains
• Physical functioning
• Rolephysical
• Bodily pain
• General health

• Mental domains
• Vitality
• Social functioning
• Roleemotional
• Mental health

Role domains refer to the impact of physical
or emotional well being on work or other
daily activities
47
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
48
Management of HCV

• Required psychosocial support
• Counseling
• Testing
• Public education
• Healthcare education

49
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

50
Counseling Strategies for HCV Infected Patients

• Viral disease
• Progression
• Consequences
• Spread
• Treatment
• Side effects

51
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

52
Stigmatization in HCV

• Open discussion with patients and their families
• Broad-based education to manage stereotyping,
  including healthcare providers

53
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

54
HCV Management
Personal Habits
55
Length of Consultation Time and Satisfaction with
Diagnosis
Length of consultation time Length of consultation time 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)
56
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

57
How to Improve Response Rates

• Organized team
• Systematic approach
• Continuous education
• Accessibility
• Friendly attitude

58
Thank You