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The patient's perspective in hepatitis C: coping with HCV, doctors, adherence, depression

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  • claudine intexas
    The patient s perspective in hepatitis C: coping with HCV, doctors, adherence, depression Hepatology April 2004 Volume 39, Issue 4 Robert J. Fontana, M.D. 1 *,
    Message 1 of 1 , Mar 30, 2004
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      The patient's perspective in hepatitis C: coping with HCV, doctors,
      adherence, depression

      Hepatology April 2004
      Volume 39, Issue 4

      Robert J. Fontana, M.D. 1 *, Ziad Kronfol, M.D. 21Department of
      Internal Medicine, Unviersity of Michigan Medical School, Ann Arbor,
      MI2Department of Psychiatry, Unviersity of Michigan Medical School,
      Ann Arbor, MI

      Abbreviations:

      HCV, hepatitis C virus; CHC, chronic hepatitis C; HRQOL,
      health-related quality of life; HIV, human immunodeficiency virus;
      PCP, primary care physician; CNS, central nervous system.

      ".....the complexity of managing some (CHC) chronic hepatitis C
      patients may rapidly exceed the training, skills, and resources of
      their primary care physician (PCP) or medical specialist.......
      Investigators have reported CNS abnormalities in CHC patients
      compared with uninfected controls, using sensitive radiological,
      neurophysiological, and neuropsychological techniques..... Our group
      has reported substantial knowledge deficits among practicing
      physicians regarding CHC that may contribute to communication
      problems...... interferon treatment is associated with depressive
      symptoms in up to 50% of CHC patients...... Patients who feel their
      needs and concerns are being addressed are more likely to comply with
      prescribed treatments and experience improved health outcomes

      ....[doctors should] Provide additional time for questions and
      discussion, engage patients in medical decision making, listen
      carefully, provide accurate and up-to-date educational materials and
      support groups, may prove beneficial for meeting the information
      needs of CHC patients, use of physician extenders (i.e. nurse
      practitioners and physician assistants) allowing docs to care for a
      large population of CHC patients in a cost-effective
      manner......adherence to antiviral therapy in CHC has been associated
      with improved efficacy......successful outcomes with prescribed
      medical care also require motivated and compliant CHC patients who
      openly communicate with their physicians........ careful pretreatment
      assessment of the anticipated individual patient risk-versus-benefit
      be undertaken before the initiation of antiviral therapy....."

      An estimated 1.8% of adult Americans are positive for anti-hepatitis
      C virus (HCV), and the prevalence of chronic hepatitis C (CHC) is
      even higher among incarcerated individuals (10%-40%), alcohol and
      intravenous drug abusers (10%-100%), and other psychiatric patients
      (10%-40%).[1][2] Not surprisingly, CHC infection is a leading cause
      of cirrhosis, liver failure, and hepatocellular carcinoma in the
      United States.[3] Most CHC patients are asymptomatic and unaware of
      their liver disease prior to diagnosis. Although many CHC patients
      have fatigue and abdominal pain, the prevalence of these symptoms in
      CHC patients is similar to that of uninfected controls.[4]
      Nonetheless, CHC patients report a consistent and significant
      reduction in multiple domains of their health-related quality of life
      (HRQOL).[5][6] Whether this is due to the uncertainty of living with
      a chronic illness, underlying psychiatric or medical disorders, or
      other psychosocial factors remains unclear.[6] However, HRQOL
      consistently improves among CHC patients following successful
      antiviral therapy.[5][7]

      Many CHC patients report feelings of stigmatization and social
      isolation from their friends, family, and coworkers.[8] Studies of
      prior and actively injecting drug users report lower HRQOL scores in
      seropositive CHC patients who are aware of their diagnosis compared
      with unaware seropositive patients.[9][10] Members of the general
      public frequently harbor inadvertent and irrational fear of
      contracting infectious diseases such as HCV due to a lack of
      education and understanding. In addition, HCV shares many clinical
      features with human immunodeficiency virus (HIV), and both may be
      easily confused by the uninformed: Both are parenterally transmitted
      infectious diseases, both have a complex natural history, and both
      can lead to serious and potentially fatal outcomes. However, CHC is
      not always progressive, and in contrast to HIV, HCV can be eradicated
      and cured with antiviral therapy. The highly variable natural history
      of CHC, however, presents challenges to both patients and their
      providers. In clinical practice, more than 80% of CHC patients are
      diagnosed by their primary care physician (PCP), while long-term
      disease management is largely provided by gastroenterology and
      hepatology specialists.

      In this issue, Zickmund et al. report (report posted on NATAP
      website) an interesting and novel study of CHC patients' perceptions
      of their physicians.[11] At a tertiary care center in Iowa, 322
      outpatients with compensated CHC completed a semistructured interview
      and mood-status inventories. Using quasistatistical methodology, the
      investigators found that 131 (41%) CHC patients reported
      communication problems with their physicians. Specifically, 28% of
      patients reported poor communication skills of their physicians that
      resulted in feelings of being rushed, ignored, or misunderstood.
      Similarly, 23% of patients reported a sense of physician incompetence
      in the diagnosis and management of their liver disease. Lastly, 9%
      reported feeling stigmatized by their doctor. Although 26% of the
      subjects carried a psychiatric diagnosis and 36% reported recent or
      active substance abuse, neither variable correlated with physician
      communication problems. However, patient psychosocial status was
      strongly correlated with physician communication difficulties.
      Patients with anxious or depressive symptoms, poor coping skills, and
      a loss of control in their life were significantly more likely to
      report communication difficulties. In addition, nonresponders to
      prior antiviral therapy were more likely to report communication
      problems than other CHC patients. Unfortunately, physicians'
      perceptions of patients' expectations, compliance, and understanding
      of their disease were not captured.

      Although this study has limitations, it does raise several important
      issues. The high rate of dissatisfaction among CHC patients compared
      with that of patients with other chronic diseases may in part be due
      to the use of semiquantitative analysis methods that may overestimate
      the incidence of problematic communication.[12] There is also a
      potential referral bias in this study, even though the age and gender
      distribution of participants is similar to that reported for the
      entire U.S. CHC population. Retrospective studies from tertiary care
      centers have previously overestimated the morbidity and mortality
      from CHC due to the inclusion of patients with more severe liver
      disease and medical and psychiatric comorbidities compared with
      prospective, population-based studies.[13-15] Therefore, future
      studies should use more objective and standardized assessments of
      patients' perceptions as well as videotaped patient-provider
      encounters and be based in the community rather than at referral
      centers. In addition, inclusion of a contemporary control group of
      non-CHC patients with a chronic illness such as HIV or chronic
      hepatitis B may provide important information on the unique needs and
      perceptions of CHC patients. Lastly, CHC patient's perceptions may
      differ from country to country, emphasizing the need to study
      cultural factors as well. However, before dismissing the findings of
      Zickmund et al. as expected based upon potential referral bias,
      alternative explanations involving patient-, illness-, and
      provider-related factors deserve consideration.

      Previous studies demonstrate a high frequency of mood and psychiatric
      disorders among active intravenous drug and substance abusers.[16]
      Since intravenous drug use is the most commonly reported parenteral
      risk factor for acquiring CHC (60% of cases) , it is not surprising
      that psychiatric disease is reported in up to 40% of CHC patients
      presenting for medical evaluation.[15][17] More frequent and severe
      emotional distress in CHC patients without known psychiatric disease
      has also been reported compared with uninfected population
      controls.[18] Although CHC patients with a longer-known diagnosis
      have more negative emotional reactions to their illness, duration of
      diagnosis was not a significant predictor of dissatisfaction in the
      Zickmund study.[19] We have previously reported that a minority of
      CHC patients report pessimism regarding their prognosis that is not
      supported by objective laboratory or histological data.[20] These
      pessimistic CHC patients also report more clinical symptoms,
      emotional distress, and a lower HRQOL, compared with other CHC
      patients.[20] Pessimism may arise from personality factors as well as
      frustration with the lack of safe and effective treatment options for
      many CHC patients. In other illnesses, such as HIV infection and
      coronary artery disease, pessimistic patients have been shown to have
      poorer health outcomes.[21] Whether this is true for CHC patients
      remains to be determined.

      Viral or liver disease factors may also contribute to some of the
      reported communication problems. Some evidence suggests HCV may have
      direct effects on the central nervous system (CNS). Investigators
      have reported CNS abnormalities in CHC patients compared with
      uninfected controls, using sensitive radiological,
      neurophysiological, and neuropsychological techniques.[22-24]
      Interestingly, the pattern of cognitive impairment reported in CHC
      patients is inconsistent with prior reports of subclinical hepatic
      encephalopathy and may occur even in patients with mild hepatic
      fibrosis.[23][24] Studies have demonstrated evidence of HCV
      replication in the brain of immunosuppressed CHC patients, but the
      interpretation and generalizability of these findings remain
      controversial.[25] An alternative explanation for the high rate of
      mood disorders and cognitive impairment among CHC patients includes
      induction of proinflammatory cytokines in the systemic circulation
      that may adversely impact CNS function.[26] For example, elevated
      serum levels of interleukin-6 and tumor necrosis factor alfa have
      been reported in CHC patients.[27] Clinical depression has also been
      associated with increased endogenous cytokine levels such as
      interleukin-6 and interferon.[26][27] Although interferon treatment
      is associated with depressive symptoms in up to 50% of CHC patients,
      the relationship between cytokine dysregulation and major depression
      is not yet fully understood. Large, prospective studies that utilize
      sensitive, objective, and validated tests of CNS function may further
      help sort out the potential direct or indirect biological effects of
      HCV on the brain.

      Lastly, the role of physician-related factors in the high rates of
      CHC patient dissatisfaction merits further investigation. Our group
      has reported substantial knowledge deficits among practicing
      physicians regarding CHC that may contribute to communication
      problems.[28] The knowledge deficits among PCPs may in part be due to
      rapid changes in medical recommendations, the conflicting literature
      regarding natural history, and the competing needs of other patients.
      For specialists caring for CHC patients, the lack of reliable
      noninvasive predictors of disease progression and the complexity of
      antiviral therapy are just some of the ongoing medical challenges.
      Furthermore, recognizing and treating psychiatric and psychological
      symptoms among CHC patients has become an integral part of their
      medical care. Interferon has a multitude of potentially serious
      neuropsychiatric side effects that range from depression to insomnia
      and, rarely, psychosis and suicide. As a result, the complexity of
      managing some CHC patients may rapidly exceed the training, skills,
      and resources of their PCP or medical specialist. In these instances,
      a mental health provider may be able to assess and treat underlying
      psychiatric disease and symptoms as well as evaluate candidates for
      antiviral therapy before and during treatment.

      Patients who feel their needs and concerns are being addressed are
      more likely to comply with prescribed treatments and experience
      improved health outcomes.[29] So what is the busy clinician to do?
      Providing additional time for questions and discussion, engaging
      patients in medical decision making, and listening carefully will
      likely prove useful. In addition, having accurate and up-to-date
      educational materials available as well as participating in support
      groups may prove beneficial for meeting the information needs of CHC
      patients. To address time constraints, some specialists have found
      that use of physician extenders (i.e. nurse practitioners and
      physician assistants) allows them to care for a large population of
      CHC patients in a cost-effective manner. Since adherence to antiviral
      therapy in CHC has been associated with improved efficacy, a stable
      doctor-patient relationship is of particular importance when using
      interferon.[30] However, successful outcomes with prescribed medical
      care also require motivated and compliant CHC patients who openly
      communicate with their physicians.[31] For this reason, it is
      recommended that a careful pretreatment assessment of the anticipated
      individual patient risk-versus-benefit be undertaken before the
      initiation of antiviral therapy.

      In light of the provocative findings of Zickmund et al., an improved
      understanding of the patient-, disease-, and provider-related
      components of the CHC patient-doctor relationship appears warranted
      for improving health outcomes. In 1998, there were an estimated
      317,000 physician office visits for CHC care in the U.S. alone, and
      CHC has become the most common indication for outpatient hepatology
      referral.[32] Physicians are trained to be empathetic toward patients
      who are suffering from a variety of acute and chronic medical
      conditions that the doctors themselves have never personally
      experienced. Because many CHC patients suffer from shame and guilt
      regarding specific lifestyles that they or others may associate with
      their illness, as well as anxiety regarding their frequently
      uncertain future, physicians may find it useful to recall the
      proverb, Until you walk a mile in my shoes.

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