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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)







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