Patients’ experiences related to anti-viral treatment for hepatitis C

Abstract

Objective

To conduct a qualitative study to elicit patients’ descriptions of their own experiences with treatment for hepatitis C (HCV).

Methods

Focus groups were conducted until thematic saturation was reached.

Results

A total of 40 patients (80% male) participated in eight focus groups. The themes that emerged most frequently during the focus groups centered on adverse effects and quality of care. The discussions highlighted discrepancies between patients’ anticipated effects of drug toxicity versus their actual experiences, gaps in communication between physicians, and the lack of social support as important shortcomings in the healthcare of HCV patients.

Conclusions

The issues raised by the participants in this study highlight several important areas that may lead to improved care for patients with HCV.

Practice implications

This study suggests that care for patients with HCV might be improved by using patient testimonials to improve accuracy of expectations, having both the primary care physician and liver specialist devise a plan to treat symptoms arising during the course of therapy, and ensuring that patients have the option of participating in a support group.

Introduction

Chronic hepatitis C infection (HCV) is a major healthcare burden in North America. At present, it is the most common indication for liver transplantation in the country, accounting for 30% of transplant cases [1]. It is estimated that the seroprevalence of HCV is 1.8% in the general US population [2]. Chronic HCV can lead to cirrhosis, liver failure, hepatocellular carcinoma, and death. Although definitive data on long-term outcomes are lacking, studies have shown that sustained virological response to treatment with interferon and ribavirin appears to be associated with a decreased rate of disease progression and improved survival [3], [4], [5], [6].

The efficacy of anti-viral therapy, however, has to be considered in the context of the natural history of HCV. Cirrhosis develops in 8–20% of patients while liver-related mortality occurs in up to 3.7% of patients over an average follow-up of 16 years [7], [8], [9], [10]. Moreover, chronic HCV does not progress at a uniform rate in all patients. Poynard et al. [11] found that 33% of patients had an expected median time to cirrhosis of less than 20 years, while 31% would not have been expected to progress to cirrhosis for at least 50 years. Therefore, although anti-viral therapy is effective at reducing progression to cirrhosis on a population level, at the individual patient level many patients will not derive any benefit from treatment.

The potentially serious adverse effects associated with therapy further complicate treatment decisions [12]. Interferon is associated with a risk of several adverse effects including (but not limited to) bone marrow suppression, flu-like symptoms, depression and other mood disorders, nausea, alopecia, anorexia, weight loss, and thyroid disorders. These adverse effects may be severe and lead to discontinuation of therapy in 10–14% of the cases [13]. Ribavirin is associated with a risk of hemolytic anemia which has precipitated myocardial infarction in patients with coronary artery disease. Ribavirin is also a significant teratogen necessitating the use of contraception in patients with childbearing potential, further complicating the decision-making process in younger patients.

The frequency of adverse effects related to interferon and ribavirin has been reported [14]. In addition, Cotler et al. [12] recently described values for health states associated with HCV among infected patients’ who had not yet undergone treatment. However, little is known about how patients understand and evaluate their own experiences with the treatment and the impact of treatment on their quality of life. The purpose of this study is to gain an in-depth understanding of patients’ experiences with anti-viral treatment from the patients’ perspectives. This information is critical to the development of approaches to better prepare patients to evaluate the risks and benefits associated with treatment and to subsequently adhere to treatment recommendations.