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The burden of HCV treatment in patients with inherited bleeding disorders

Summary.  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.