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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
Author(s) -
Wiley Ryan E.,
Khoury Charles P.,
Snihur Adrian W. K.,
Williams Marni,
Page David,
Graham Nicole,
Laudenbach Lori,
MilneWren Cindy,
Stoffman Jayson M.
Publication year - 2019
Publication title -
haemophilia
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.213
H-Index - 92
eISSN - 1365-2516
pISSN - 1351-8216
DOI - 10.1111/hae.13754
Subject(s) - haemophilia , medicine , psychosocial , quality of life (healthcare) , disease , value (mathematics) , psychiatry , nursing , pediatrics , pathology , machine learning , computer science
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. Aim 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. Methods 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. Results 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. Conclusion 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.