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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 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 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” 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 ce ns pla nt at ion ve rc en t ch an ge ot he rs plo ym Liv e of e le ing sty St igm ao f li Lo ss Lif e ec t In f ion Pr em at ur ed In ea fec 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 Experience any symptoms Experience no symptoms Not sure 50% 30% 20% Self-reported Symptoms of HCV 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 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 180g + RBV 1000-1200mg (Hadziyannis, et al.) Peg-IFN 2a 180g + 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 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) 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 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 Fear Panic Depression Feelings of negativity Anxiety about transmission Lack of confidence in sexual desirability 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 Organized team Systematic approach Continuous education Accessibility Friendly attitude Better Outcome Thank You