Hepatitis C: Get Tested
by Lucinda K. Porter, RN
The Centers for Disease Control and Prevention (CDC) estimate the number of people in the U.S. with chronic hepatitis C virus infection (HCV) is 3.2 million.[i] Other research places the figure closer to 5 million or more.[ii] [iii] The bottom line is this—there are a lot of people in the U.S. with HCV. Worldwide, there are 150-170 million people with this virus.[iv]
The sheer numbers of HCV-infected people is not our biggest problem. The greater concern is that as many as three out of four people with HCV do not know they have it.[v] In short, the majority of those with HCV don't know they harbor a potentially deadly virus—a virus that claims more lives in the U.S. than HIV does.
No diagnosis means patients aren’t aware that they risk infecting others. It may mean decreased quality of life. No diagnosis means no treatment. Diagnosis leads to choice, and choice leads to health. For instance, in the CDC’s efforts to gather better data, they learned that the majority of those who are HCV antibody-positive admit to drinking an average of more than two drinks daily.
Baby Boomers, those born in the years 1945–1965 account for approximately three fourths of all HCV infections in the United States. 1 in 30 Baby Boomers are infected. Although Baby Boomers make-up nearly ¼ of the population, they suffer nearly ¾ of the deaths from HCV. If we do not intervene in the next decade there will be one million cases of cirrhosis just from hepatitis C. This problem adds a huge burden to our healthcare dollars, which in the U.S. means an enormous Medicare bill.
The CDC has recommended one-time testing for all Baby Boomers. It is a great idea but one facing more obstacles than anticipated. For example:
Here is what you can do: encourage everyone born between 1945-1965 to be tested for hepatitis C. Ask them to encourage others. If someone says, "Why should I be tested? I don't have any risk factors," tell them, "It’s not how you lived—it is when you lived. Besides, aren't you worth a $20 to $25 test?" That is a cheap price to pay for peace of mind.
Lucinda K. Porter, RN is the author of Free from Hepatitis C. To read her blog or contact her, visit http://lucindaporterrn.com/
[ii] Chak E, Talal AH, Sherman KE, et al. Hepatitis C infection in USA: an estimate of true prevalence Liver International 2011;31:1090-1101
[iii] Edlin BR Perspective: test and treat this silent killer Nature 2011;474:S18-19
[iv] World Health Organization
[v] U.S. Department of Health and Human Services Combating the Silent Epidemic of Viral Hepatitis
Hepatitis C and Quality of Life
Hepatitis C and Quality of Life — Lucinda K. Porter, RN Source: www.hcvadvocate.org
What does quality of life mean to you? Is it your health, happiness, financial security, spiritual wellness, or social well-being? It usually means different things to different people. In healthcare, researchers use surveys to measure the quality of life related to health, abbreviated as HRQOL. When applied to hepatitis C, HRQOL is an important concern.
For many, quality of life is a significant factor when making decisions about hepatitis C treatment. Patients want to know if they are going to get back a better quality of life in exchange for a temporarily reduced one caused by the side effects of the HCV medications. In short, should they stick with what they have, or go through a rough spell in order to improve on their health? In this article, I highlight research on HRQOL and various aspects of living with chronic hepatitis C virus (HCV) infection. These aspects include quality of life with HCV, during HCV treatment, and after treatment.
Quality of Life with HCV
If you look at the research, it is clear that HRQOL is generally lower for those living with HCV. In a recent study published by Yamini and colleagues,1 patients with HCV reported reduced quality of life. HCV negatively affected patients physically, mentally, emotionally, and socially. Yamini wrote, “The deleterious effects of HCV extend beyond liver disease, as exhibited by the high prevalence of depression and fatigue in the study population.” 2 (See HCV Snapshots for more about this study.)
Reduced quality of life is a global problem. An Italian study conducted by Umberto Cillo and colleagues, compared patients with alcoholic liver disease to patients with alcoholic liver disease and HCV.3 The findings were that having HCV negatively affects quality of life.
Multiple studies from all over the world confirm these findings. Graham R. Foster, Professor of Hepatology at London School of Medicine wrote, “Chronic infection with HCV has a profound effect on health-related quality of life.”4 HCV patients report problems with fatigue, depression, and sexual function. A chief complaint is neurocognitive problems, such as impaired concentration and attention problems. Sleep disturbances are another complaint among those with HCV, which also lowered HRQOL.
If quality of life is affected by having HCV, then it would stand to reason that patients with more liver damage (fibrosis and cirrhosis) would report a lower HRQOL. At a meeting of the American Association for the Study of Liver Diseases, Gerlinde Teuber and colleagues presented a poster that tested this hypothesis.5 They found that as liver fibrosis increased, quality of life declined. They also reported that viral load and genotype were not associated with HRQOL.
Some studies compared HRQOL among the various liver diseases and other causes of viral hepatitis. In a Greek study, Katerina Karaivazoglou and colleagues found no HRQOL differences between those with hepatitis B virus compared to those with HCV.6 Their findings showed fatigue and impaired psychological function, particularly depression, as the key factors that affected quality of life.
Although biological effects of HCV are well-documented, other factors may also have an impact on HRQOL. HCV is stigmatized and many patients report feelings of guilt, shame, and rejection. These feelings affect self-esteem and relationships, which heavily influence quality of life. In fact, knowledge of an HCV diagnosis lowers HRQOL. A few studies examined this, with varying results. The findings are best summarized as: those with HCV have a lower HRQOL, but those who know they have HCV have a lower HRQOL than those who are unaware of their positive HCV status.
Quality of Life during HCV treatment
In the years I have worked in this field, either as a n
urse or as an HCV advocate, I never once heard a patient report a better quality of life during treatment. I’ve collected a few anecdotes of positive side effects. A nurse at another hospital told me of two male patients who begged to stay on ribavirin because it improved their sex life. One female patient of mine with exceptionally thick hair said that her hair never looked better because of treatment-related hair loss. However, these and the few other tales I collected do not amount to an improved quality of life during HCV treatment.
With its high side effect profile, it seems unlikely that patients are going to feel better while they are actually taking HCV medications—they take them hoping to get rid of the virus and to feel better after the effects of the medication have worn off. Studies confirm what any patient will tell you—HRQOL declines during HCV treatment.
However, the intensity of side effects is subjective, which may affect how we perceive quality of life. Knowledge of laboratory results may influence how we feel. A few studies showed that patients reported improvements of quality of life after learning they had a good response to the medications. However, the perception of quality of life isn’t all in the head. Research conducted by Strauss and Teixeira showed that before results were revealed to them, patients who were HCV negative after treatment reported a better HRQOL than those who were HCV-positive.7
Adherence to treatment does not seem to influence HRQOL, a fact supported by multiple studies. Most recently, Patrick Marcellin and colleagues observed that quality of life did not seem to fluctuate with the level of adherence to treatment regimen.8 The real changes in quality of life occurred after treatment.
Quality of Life after HCV treatment
Here is the good news: Marcellin and many others have researched this topic so extensively that there seems little room to believe anything else—quality of life increases when patients respond to treatment. In short, patients feel better when HCV is gone. The evidence is robust and plentiful. There is so much research telling us that curing HCV is associated with improved quality of life, that to doubt it is like believing that the world is flat.
When I thought about undergoing HCV treatment again (this will the third time), it was from the perspective of stopping disease progression. I can see and feel this disease taking its toll on my body. I want to stop HCV in its tracks. Another compelling reason is that research tells us that a sustained virologic response (SVR) to treatment reduces mortality from all causes, not just liver-related ones.9 Increasing my mortality rate is an excellent reason to undergo treatment for a third time.
However, now there is more incentive. The evidence points to the fact that I may not just arrest the disease, but in time, I could actually feel much better. The difference is subtle but important. Stopping HCV is a good thing, but it is much more powerful to think that treatment offers more than just stopping things before they get worse. The notion that I could feel better is powerful motivation.
From time to time, I ask people who had a sustained response to treatment if they can tell the difference. The response is always the same. They glow when they tell me, “You have no idea how good it feels.” It is all I need to know to make my decision.
Centers for Disease Control and Prevention Health-Related Quality of Life
HCV Advocate’s Medical Writers’ Circle Health Related Quality of Life and Hepatitis C, David Bernstein, MD
Yamini D, et al. - Tobacco and Other Factors Have a Negative Impact on Quality Of Life in Hepatitis C Patients; Journal of Viral Hepatitis October 2011; Vol.18, Issue 10 ibid.
Cillo U, et al.- Hepatitis C Virus Adversely Affects Quality of Life; Blood Purification 2011Vol. 32, No. 2
Foster G R - Quality Of Life Considerations for Patients with Chronic Hepatitis C; Journal of Viral Hepatitis September 2009 Vol 16 Issue 9
Teuber G, et al. - Effects of Chronic HCV Infection on Health-Related Quality Of Life and Fatigue: The Role of Liver Fibrosis Progression; American Association for the Study of Liver Diseases 2007 meeting Abstract 1330
Karaivazoglou K et al.- Fatigue and Depressive Symptoms Associated with Chronic Viral Hepatitis Patients’ Health-related Quality of Life; Annals of Hepatology Oct-Dec 2010 Vol 9, No 4
Strauss E, Teixeira, MCD - Quality of Life and Hepatitis C; Liver International September 2006 Vol 26 No 7
Marcellin P, et al. - Adherence to Treatment and Quality Of Life during Hepatitis C Therapy: A Prospective, Real-Life, Observational Study; Liver International April 2011 Vol 31 Issue 4
El-Kamary S, Jhaveri R, Shardell M - All-Cause, Liver-Related, and Non–Liver-Related Mortality among HCV-Infected Individuals in the General US Population; Clinical Infectious Disease July 2011 Vo 53 Issue 2