Hepatitis C virus in hemophilia: Health-related quality of life after successful treatment in the sixth Hemophilia in the Netherlands study

Cas J Isfordink, Samantha C Gouw*, Erna C van Balen, Shermarke Hassan, Erik A M Beckers, Johanna G van der Bom, Michiel Coppens, Jeroen Eikenboom, Kathelijn Fischer, Louise Hooimeijer, Frank W G Leebeek, Frits R Rosendaal, Saskia E M Schols, Cees Smit, Lize F D van Vulpen, Eveline P Mauser-Bunschoten

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review


Introduction: Persons with hemophilia and hepatitis C virus (HCV) infection have a lower health-related quality of life (HRQoL) than those never HCV infected. However, it is unknown whether HRQoL after HCV eradication is comparable to individuals never HCV infected. We aimed to compare HRQoL between HCV-cured and never chronically HCV-infected persons with hemophilia.

Methods: All persons with hemophilia in the Netherlands were invited for a nationwide study conducted in 2018-2019. For the current analysis, participants born before 1992 with data on HRQoL and HCV status were included. HCV status was collected from medical records. HRQoL was measured by RAND-36 questionnaire, with a minimally important difference set at 4.0 points. Multivariable linear regression was used to adjust for age, hemophilia severity, HIV status, and self-reported joint impairment.

Results: In total, 486 persons were eligible; 180 were HCV cured and 306 never chronically HCV infected. Compared with those never HCV infected, HCV-cured individuals were older (57 vs. 53 years), more often had severe hemophilia (67% vs. 21%), and reported more impaired joints (median 3 vs. 0). Compared with those never HCV infected, adjusted RAND-36 domain scores of HCV-cured individuals cured were lower on all RAND-36 domains except Pain, ranging from a difference of 4.5 (95% CI, -8.8 to -0.3) for Physical functioning to 11.3 (95% CI, -19.4 to -3.1) for Role limitations due to physical problems.

Conclusion: Despite effective HCV treatment, HRQoL of HCV-cured persons with hemophilia is still lower than HRQoL of those never chronically HCV-infected on all RAND-36 domains. This implies that careful psychosocial follow-up and support are indicated.

Original languageEnglish
Article number12616
Pages (from-to)e12616
Number of pages11
JournalResearch and practice in thrombosis and haemostasis
Issue number8
Publication statusPublished - Dec 2021


  • direct-acting antivirals
  • hepatitis C virus
  • hemophilia A
  • hemophilia B
  • patient reported outcome measures
  • RAND-36
  • viral hepatitis
  • RISK


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