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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. 1 (71%).
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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 1 (71%) 2/3 (22%) Genotype HANES III data: 1988-1994; Alter, et al., NEJM, 1999
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%)
HCVHigh Risk Population • Intravenous drug users • Intranasal drug users • Alcoholics • Mentally ill individuals • Incarcerated individuals • Homeless • Living below poverty level
Prevalence by Age Group 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
Correlation Between Severity of Stigmatization and the Hospital Anxiety Depression (HAD) and Sickness Impact Profile (SIP)
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 27% • Premature death 19% • Infecting family members 13% • Side effects of treatment 11% • Others
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%
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
Depressed Mood Stigma HCV-Related Depression Symptom Experience Uncertainty Personality HCV Therapy
Depression in HCV Causes: • Family history • Alcohol use • Abuse of drugs (licit, illicit) • Medications (interferon) • Medical illness • Chronic pain • Chronic stress • Stigmatization
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 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 • 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) • 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
Physical domains Physical functioning Role–physical* Bodily pain General health Mental domains Vitality Social functioning Role–emotional* Mental health SF-36 Health Survey Components * ‘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