The societal burden of haemophilia A. I - A snapshot of haemophilia A in Australia and beyond

Haemophilia. 2020 Aug:26 Suppl 5:3-10. doi: 10.1111/hae.14102.

Abstract

Introduction: Few studies, both in Australia and overseas, have examined the social impacts of living with haemophilia A (HA) or the economic costs associated with the disorder. The purpose of this paper is to examine the epidemiology and societal burden of people with HA (PwHA) in Australia, with a particular focus on men with this disorder.

Methods: The epidemiology and societal burden of HA in Australia, with a particular focus on men with this disorder, were assessed, using data available in the Australian and international literature and publicly available data.

Results: The mean annual prevalence of HA is approximately 1-2 per 10 000 males. Prophylactic treatment is used in one-quarter (25.1%) of people with moderate HA, and 82.2% of people with severe HA. Within the latter group, 16.1% have inhibitors for Factor VIII, predisposing them to worse morbidity, mortality and quality of life when compared to the non-inhibitor population. Joint pain and joint disease occur commonly in PwHA, with up to 70% of adults with HA experiencing joint problems. HA is associated with poor physical health, and PwHA miss school and work due to bleeding-related events.

Conclusion: HA is associated with substantial economic burden; with large differences in costs reported between countries. Overall, HA imposes a significant burden of disease on PwHA, their families and the community at large.

Keywords: Australia; epidemiology; haemophilia A.

Publication types

  • Meta-Analysis
  • Review

MeSH terms

  • Adolescent
  • Adult
  • Age Factors
  • Aged
  • Australia / epidemiology
  • Child
  • Child, Preschool
  • Cost of Illness*
  • Factor VIII / administration & dosage
  • Factor VIII / adverse effects
  • Factor VIII / therapeutic use
  • Global Health / statistics & numerical data
  • Hemophilia A / complications
  • Hemophilia A / diagnosis
  • Hemophilia A / epidemiology*
  • Hemophilia A / therapy
  • Hospitalization
  • Humans
  • Infant
  • Infant, Newborn
  • Male
  • Middle Aged
  • Prevalence
  • Public Health Surveillance
  • Quality of Life
  • Registries
  • Severity of Illness Index
  • Sex Factors
  • Young Adult

Substances

  • F8 protein, human
  • Factor VIII

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