The burden of HCV treatment in patients with inherited bleeding disorders.

Many patients with inherited bleeding disorders are infected with hepatitis C virus (HCV). Antiviral treatment, consisting of pegylated interferon and ribavirin, has many side-effects. The aim of the study was to prospectively assess the occurrence and course of side-effects and changes in health-related quality of life (HRQoL) during antiviral treatment in patients with inherited bleeding disorders and chronic HCV. Forty-seven patients were followed during antiviral treatment. Side-effects of treatment were recorded, and the Beck Depression Inventory and the RAND-36 HRQoL questionnaire were administered at regular intervals. Frequently reported side-effects were fatigue (100%), headache (94%), pruritus and skin rash (94%), concentration problems (89%), decreased appetite (89%), fever, irritability and hair loss (all 85%). Many side-effects disappeared soon after end of treatment, but 4 weeks after cessation fatigue, concentration problems and sleeping problems were still present in more than 30% of patients. Dose reduction was necessary in 21 patients (45%), mostly because of decreasing weight or haemoglobin levels. Two patients stopped treatment prematurely because of side-effects. Depression was present in 28 patients (60%). HRQoL decreased significantly during treatment in all RAND-36 domains, and increased again within 4 weeks after treatment. Major side-effects were similar in patients with successful (n = 31, 66%) and unsuccessful antiviral treatment. In patients with inherited bleeding disorders and chronic HCV, antiviral treatment has many, but mostly transient side-effects and a significant impact on quality of life. Careful follow-up and management of side-effects will ensure optimal compliance and treatment results.