Shannon van Hoorn

206 Chapter 7 testing and the diagnosis are then discussed as soon as the results become available during a telephone consultation. Soon after this consultation, the patient and caregivers visit the outpatient clinic of the HTC for a consultation. Treatment Directly after the diagnosis, the patient is placed on on-demand treatment and a treatment plan is composed for the treatment of (spontaneous) bleeding episodes. During the first consultation at the outpatient clinic of the HTC, the patient, caregivers and the healthcare professional decide on the future treatment trajectory. Different treatment modalities are possible depending on the type and severity of hemophilia, and the bleeding phenotype. The treatment modalities are the same across all five HTCs; patients can start prophylactic treatment or stay on on-demand treatment in case of (spontaneous) bleeding episodes. Patients that start prophylactic treatment regularly visit the HTC for the administration of medication. During these visits, the nurse or nurse practitioner/consultant teaches one or both caregivers to administer the treatment. If necessary and available, home care can be called in by all HTCs to take over the administration of medication from the nurse or nurse practitioner/consultant until the caregivers are capable and ready to administer treatment themselves. Caregivers can order the required medication at the HTC and at all HTCs except HTC 1 there is a possibility to have the medication delivered at home. Besides starting medical treatment to prevent or treat bleeding episodes, patients may also be referred to the social worker, pediatric physical therapist, pediatric psychologist or other medical specialists if needed. Follow-up In the follow-up phase, the care trajectory patients follow depends on the current treatment of the patient, e.g. prophylactic or on-demand treatment. Pediatric patients who receive on-demand treatment have a physical consultation at the outpatient clinic once a year, while patients on prophylaxis visit the outpatient clinic twice a year at the majority of HTCs. An exception are patients on prophylaxis treated at HTC 2 and HTC 5. Patients on prophylaxis treated at HTC 5 alternatively have a telephone and physical consultation at the outpatient clinic every 3 to 4 months until their fourth birthday. After their fourth birthday, the telephone consultations become optional. Patients on prophylaxis treated at HTC 2 have a physical consultation at the outpatient clinic every 3 to 4 months instead of twice a year throughout the whole follow-up.

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