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From the voices of people with haemophilia A and their caregivers: Challenges with current treatment, their impact on quality of life and desired improvements in future therapies.

Authors
  • Wiley, Ryan E1
  • Khoury, Charles P1
  • Snihur, Adrian W K1
  • Williams, Marni1
  • Page, David2
  • Graham, Nicole3
  • Laudenbach, Lori4
  • Milne-Wren, Cindy5
  • Stoffman, Jayson M6
  • 1 Shift Health, Toronto, Ontario, Canada. , (Canada)
  • 2 Canadian Hemophilia Society, Montreal, Quebec, Canada. , (Canada)
  • 3 Health Sciences North Children's Treatment Centre, Sudbury, Ontario, Canada. , (Canada)
  • 4 London Health Sciences Centre, London, Ontario, Canada. , (Canada)
  • 5 Children's Hospital, London Health Sciences Centre, London, Ontario, Canada. , (Canada)
  • 6 Pediatrics and Child Health, University of Manitoba, Winnipeg, Manitoba, Canada. , (Canada)
Type
Published Article
Journal
Haemophilia : the official journal of the World Federation of Hemophilia
Publication Date
May 01, 2019
Volume
25
Issue
3
Pages
433–440
Identifiers
DOI: 10.1111/hae.13754
PMID: 31016823
Source
Medline
Keywords
Language
English
License
Unknown

Abstract

Haemophilia A is a chronic disease requiring frequent intravenous infusions of recombinant factor VIII. Previous studies have shown that challenges associated with current treatments may have significant impacts on quality of life (QoL) that are as important as the health outcomes conferred by the therapy. Emerging therapeutic innovations offer the potential to mitigate treatment-related challenges, and it is therefore important to develop a better understanding of patient and caregiver experiences with existing haemophilia A treatments in order to characterize the full value of new treatments. To gather firsthand perspectives from people with haemophilia A (PWHA) and caregivers on the challenges with current treatment, their impact on QoL and desired improvements in future therapies. Qualitative insights were gathered from 20 non-inhibitor PWHA or caregivers of PWHA across Canada through one-on-one interviews; insights were further explored through focus group sessions to uncover overarching themes and prioritize issues with current treatments. PWHA and caregivers identified several challenges, including administration of intravenous infusions, coordination of treatment schedules and ensuring adequate medication and supplies. Participants described how these challenges impact psychosocial well-being, physical health, personal/social life and work. Alternate modes of administration and longer-lasting treatment effects were identified as desired improvements over current treatments. This study emphasizes the impact that existing haemophilia A treatments have on psychological well-being, employment opportunities and adherence to treatment regimens. These considerations may help to inform decision-making for policymakers and health systems around the true value of new therapies entering the haemophilia market. © 2019 The Authors. Haemophilia Published by John Wiley & Sons Ltd.

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