What Matters Most for Treatment Decisions in Hepatitis C: Effectiveness, Costs, and Altruism.

Mattingly, T Joseph; Slejko, Julia F; Perfetto, Eleanor M; Kottilil, Shyamasundaran; Mullins, C Daniel

OBJECTIVE Comparative evaluations of innovations in hepatitis C virus (HCV) drug therapy typically focus on sustained virologic response (SVR) without addressing psychological and socioeconomic challenges that extend beyond virologic cure. This study aims to identify and prioritize variables important to patients when making the decision to start HCV treatment. METHODS A three-round Delphi process was conducted with the first round derived from a systematic literature review and advisory board input, including patients who have been affected by HCV, physicians, pharmacists, and a patient group representative. Delphi panelists were HCV patients who had received treatment or were considering treatment. Panelists were asked about factors influencing their HCV treatment decisions. Thematic analysis of open-ended responses based on grounded theory was used. Agreement with each category and rankings based on order of importance from the patient perspective was reported. RESULTS Treatment effectiveness (100% agreement), longer life (88%), fear of complications (84%), financial issues (80%), quality of life (100%), and impact on society (80%) were considered important factors to patients in decisions to seek treatment. A fear of harming others (87%) was considered more important than physical symptoms (83%) in terms of patient-reported problems caused by HCV. Medication costs (91%) were identified as the most important costs of having HCV, followed by doctor costs (77%). CONCLUSIONS In addition to treatment effectiveness, patient experiences with financial problems, quality of life, and altruistic desires impact HCV patients' decisions. The risk of infecting others may motivate patients to seek treatment as much as personally experienced physical symptoms.