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Hemophilia negatively impacts the caregiver's HRQoL, especially when a child is affected (Khair
and von Mackenson 2017). Pain, emotional stress, and financial burden have been reported as
the most burdensome domains among caregivers of children as well as adult patients with
hemophilia A (Dekoven et al. 2014) (Dekoven et al. 2013).
The emotional and practical aspects of caregiver burden are specifically high when the patient
requires frequent infusions of hemophilia treatment. A large study including hemophilia
caregiver reported worse social, physical, emotional, financial, and lifestyle impact with more
infusions per week (Schwartz et al. 2018).
Cooperation is needed among the key stakeholders (Sheh-Li Chen. 2016):
.
Healthcare Patients and Managed care
professionals their caregivers professionals
Benefits of cooperation among the stakeholders (Sheh-Li Chen. 2016):
Individualized Individualized Optimized clinical
treatment strategies strategies and economic
for patients with designed to prevent outcomes while
hemophilia complications enhancing patient QoL
3.3. ECONOMIC BURDEN
The management of hemophilia is associated with high medical expenses and high indirect
costs that can vary widely depending on disease severity, frequency of bleeds, presence or
absence of inhibitors to FVIII, and treatment regimen.
Direct medical costs for hemophilia include:
• Outpatient drug acquisition claims (drug acquisition claims for
prophylaxis treatment)
• Inpatient admission claims (drug acquisition claims needed to
manage the bleeding episodes)
HEMLIBRA Monograph-Non-inhibitors | 05
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