209 The care pathway for young children with hemophilia in the Netherlands 7 Inhibitor development The care trajectory patients follow in case of inhibitor development is similar across all five HTCs. An inhibitor can be found either during a regularly scheduled blood withdrawal or during an additional blood withdrawal when response to treatment is decreased or after a severe and/or atypical bleeding episode. If an inhibitor is found, a second blood withdrawal is performed for confirmation. The results of this (second) blood withdrawal are reported and discussed by telephone consultation with the patient and caregivers. When an inhibitor is diagnosed, a consultation at the outpatient clinic is scheduled. During this consultation, shared decision making takes place to discuss the treatment of the patient and the required adaption of the current treatment plan. We found that these treatment options are the same across all HTCs. Patients will need to switch to a different prophylactic treatment (e.g., different product, different dosage or they start prophylaxis) and a different on-demand treatment in case of (spontaneous) bleeding episodes or planned medical interventions. In addition, the inhibitor can be treated with immune tolerance induction therapy. This option is, however, chosen less often due to the other available treatment options. Planned medical interventions performed at the hemophilia treatment center Planned medical interventions can be categorized into surgeries performed at the same hospital as the HTC, surgeries performed in a regional hospital, and dental procedures performed at a dental clinic. The care trajectory differs between these types of medical interventions. When patients are scheduled for a surgery or dental procedure at the same hospital as the HTC, the department involved and the caregivers of the patient are expected to inform the pediatric HTC team, e.g. the pediatric hematologist, nurse practitioner, nurse consultant or nurse. In addition, at HTC 1, 2 and 5 the hospital admission office contacts the pediatric HTC team to inform them about the upcoming medical procedure. As soon as the HTC is informed, a medical procedure treatment plan is composed. Depending on the HTC, this treatment plan is discussed with the patient and caregivers, the operating medical specialist and/or the involved (shared care) hospital or dental clinic. Each HTC undertakes different steps to prepare for the upcoming medical procedure. These steps may include, but are not limited to, ordering of medication, informing all involved healthcare
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