What do patients consider when making decisions about treatment for hepatitis C?

Purpose There are few data describing decision-making in chronic hepatitis C infection from the patient’s perspective. In this study, we sought to investigate the factors that influence patients’ decisions as they consider treatment for hepatitis C infection. Subjects Consecutive patients attending outpatient liver clinics were recruited. Purposeful sampling was employed to include patients who were currently being treated or had recently been treated for chronic hepatitis C infection with pegylated-interferon and ribavirin as well as patients who had refused therapy. Methods We conducted focus groups until thematic saturation was reached. All focus groups were facilitated by the same PhD-level senior research scientist, and constant comparative methods were used to analyze the data. Results A total of 40 patients (80% male) participated in 8 focus groups. The factors influencing patients’ decision-making that emerged most frequently during the focus groups were consideration of risk benefit tradeoffs, protected values, heuristics, participants’ conceptualization of hepatitis C infection, social issues, and physicians’ recommendations. Conclusion Ideally, complex decision-making is based on careful consideration of the tradeoffs related to available options. Our findings suggest that patients’ treatment decisions are influenced by multiple factors besides the risks and benefits of interferon and ribavirin. By being aware of these factors physicians can improve decision-making in hepatitis C infection by 1) determining whether patients’ decisions are biased by heuristics or protect values, 2) understanding how patients’ conceptualization of their illness influences their attitudes toward therapy, and by 3) ensuring that patients understand that social responsibilities need not necessarily preclude treatment because therapy can be discontinued if adverse effects become intolerable.