Health status and quality of life in patients with severe hemophilia A: A cross-sectional survey

  • Majid Davari Department of Pharmacoeconomic sand Pharmaceutical Administration, Faculty of Pharmacy, Tehran University of Medical Sciences, Tehran; Health Equity Research Center, Tehran University of Medical Science, Tehran, Iran, Islamic Republic of.
  • Zahra Gharibnaseri Department of Health Economics, National Institute for Health Research, Tehran University of Medical Science, Tehran, Iran, Islamic Republic of.
  • Roya Ravanbod Department of Physiotherapy, Faculty of Medical Sciences, Tarbiat Modares University, Tehran, Iran, Islamic Republic of.
  • Abolfazl Sadeghi | abolfazlsadeghi32@gmail.com Department of Pharmacoeconomics and Pharmaceutical Administration, Faculty of Pharmacy, Tehran University of Medical Sciences, Tehran, Iran, Islamic Republic of.

Abstract

Among different groups of hemophiliacs, those suffering from Severe Hemophilia A (SHA) are most vulnerable to the complications of the disease. This study investigated the Health-Related Quality of Life (HR-QoL) among adult patients with SHA. A cross-sectional study was designed to gather demographic and clinical information from adult patients with SHA. Patients with inhibitors were excluded. The remaining were asked to complete the HR-QoL questionnaire after being examined for joint health using the Hemophilia Joint HealthScore (HJHS). The HR-QoL and joint conditions were measured in 38 patients. The mean EQ-5D value scores were 0.46 (SD=0.23) while the mean Visual Analogous Scale score was 50 (SD=18.7). The clinical examination of patients indicated that the HJHS were as follows: eight patients had a score of 55-75, 12 patients had a score of 40-55, 7 of them (25-40) and 11 patients had a score of 10-25. The results obtained from this study showed that HR-QoL in hemophilia patients was considerably low. Pain, anxiety/depression, and motion limitations were the main causes of the disutility for these patients respectively.

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Published
2019-06-14
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Original Articles
Keywords:
Hemophilia, health-related quality of life, hemophilia joint health score, EQ-5D
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How to Cite
Davari, M., Gharibnaseri, Z., Ravanbod, R., & Sadeghi, A. (2019). Health status and quality of life in patients with severe hemophilia A: A cross-sectional survey. Hematology Reports, 11(2). https://doi.org/10.4081/hr.2019.7894