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A Bi-Monthly Publication of the Hepatitis Support Project

April 14, 2004 Volume 1, Issue 7

Liz Highleyman

To download pdf version click here

In This Issue: Hepatitis C

Quality of Life

Patient-Physician Communication

New Hepatitis C Guidelines

Quality of Life

Quality of life is a crucial issue for people with chronic hepatitis C. While combination therapy can slow HCV replication and improve liver health, individuals are understandably concerned about how treatment and its side effects will affect their everyday life. In addition, decreased quality of life can contribute to poor adherence and early discontinuation of treatment.

In the April 2004 issue of the Journal of Hepatology, Tarek Hassanein and colleagues report on the impact of different types of HCV therapy on health-related quality of life. In this study 1,121 patients with chronic hepatitis C were randomly assigned to receive pegylated interferon (Pegasys) monotherapy, Pegasys plus ribavirin or placebo, or conventional interferon plus ribavirin. To assess health-related quality of life, the researchers used two surveys, the SF-36 Health Survey and the Fatigue Severity Scale, which measure factors such as physical functioning, bodily pain, social functioning, mental health, vitality, and fatigue. Patients receiving Pegasys plus ribavirin had better quality of life score—including less fatigue, more energy, and less pain—than those taking conventional interferon plus ribavirin, especially during the first two weeks. These results are consistent with past research suggesting that Pegasys is associated with fewer flu-like symptoms and less depression than conventional interferon.

In a related report in the March 2004 issue of the Journal of Viral Hepatitis, R. Perrillo and colleagues looked at quality of life, work productivity, and use of medical resources in patients receiving HCV therapy. In this study 412 patients were randomly assigned to receive Pegasys monotherapy or conventional interferon plus ribavirin. These researchers also used the SF36 scale, along with the Hepatitis Quality of Life Questionnaire. They found that patients receiving Pegasys had less impaired quality of life than those taking conventional interferon, especially during the first 24 weeks. The Pegasys group had better work functioning and productivity, improved ability to perform other activities, better adherence, and less need for adjunct medications to manage adverse side effects. Unlike Hassanein’s study, this one did not include a Pegasys plus ribavirin arm, and thus did not test whether adding ribavirin led to more impairment than Pegasys alone.

Patient-Physician Communication

Unfortunately, according to a study by Susan Zickmund and colleagues in the April 2004 issue of Hepatology, many hepatitis C patients report conflicts or problems communicating with their physicians. This study included 322 participants with chronic HCV seen at a hospital hepatology clinic in Iowa. Subjects completed a 24-question interview, the Sickness Impact Profile, and the Hospital Anxiety Depression scale. Forty-one percent reported some type of negative interaction with their doctor(s). The main problems were perceived poor communication skills on the part of physicians (reported by 28% of patients), a belief that physicians were incompetent in diagnosing or treating hepatitis C (23%), feelings of being “misdiagnosed, misled, or abandoned” (16%), and perceived stigmatization by physicians (e.g., being considered sexually promiscuous or a drug abuser) (9%). Many patients reported feeling rushed, being treated unkindly, not being listened to, or feeling misunderstood. Some felt physicians dismissed their physical complaints as psychological. Interestingly, patients were twice as likely to report difficulties with specialists (such as gastroenterologists and infectious disease specialists) compared with general practitioners, even though specialists would be expected to have more competence in diagnosing and treating hepatitis C.

In a multivariate analysis, “psycho-social problems” were the best predictors of communication difficulties. These included depression, anxiety, poor coping skills, pessimistic outlook, lack of social support, feelings of isolation, interpersonal problems with family or coworkers, perceived lack of control, and lower quality of life. However, diagnosed psychiatric illness and past or present substance use were not associated with a higher likelihood of patient-physician conflict. In this study conflict was associated with lack of response to therapy, although the direction of cause and effect was not clear.

In an accompanying editorial, Robert Fontana and Ziad Kronfol noted that patients and physicians alike may experience “frustration with the lack of safe and effective treatment options,” and be unaware of recent improvements in HCV therapy. But, the authors emphasize, “Patients who feel their needs and concerns are being addressed are more likely to comply with prescribed treatments and experience improved health outcomes.” They suggested that physicians should provide additional time for questions, engage patients in decision making, provide up-to-date educational materials, and encourage patients to participate in support groups.

New Hepatitis C Guidelines

Finally, new practice guidelines from the American Association for the Study of Liver Diseases (AASLD) for the diagnosis, management, and treatment of hepatitis C were published in the April 2004 issue of Hepatology. The recommendations are based on a review of worldwide medical literature, existing guidelines from other groups and agencies (such as the Centers for Disease Control and Prevention), and the experience of recognized experts. The guidelines cover issues such as who should be tested for hepatitis C (people with risk factors, including anyone who has ever injected drugs) and the utility of liver biopsy (laboratory markers of fibrosis are “currently insufficiently accurate” and biopsy “remains the only means of defining the severity of damage from HCV infection in many patients”). Pegylated interferon is recommended as the “treatment of choice,” with no distinction made between Pegasys and Peg-Intron.

The guidelines also include discussion about managing hepatitis C in several special populations, including previous non-responders and relapsers (retreatment is recommended for those previously treated with conventional interferon); patients with persistently normal ALT (treatment decisions should not be based solely on ALT level); children (those over age 3 may be treated with conventional interferon plus ribavirin, but pegylated interferon is not yet approved); individuals coinfected with HIV (should be carefully monitored for side effects and drug interactions); people with kidney disease (should not receive ribavirin); patients with decompensated cirrhosis and transplant recipients (both should be managed by experienced practitioners); individuals with acute HCV (no definitive recommendations can be made, but it seems reasonable to delay treatment for 2-4 months to allow for spontaneous HCV clearance); and active drug users or those on methadone maintenance (treatment should not be withheld).

In summary, these guidelines do not include any drastic departures in standards of care, but they reflect the latest refinements in testing, diagnosis, and therapy suggested by the most recent clinical studies.

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