Shannon van Hoorn

208 Chapter 7 home. In addition, at HTC 1 and 2 the followed care trajectory also depends on whether the bleeding occurs during or outside office hours. Patients and/or caregivers who are not able to administer treatment at home are required to come to the HTC. Depending on when the bleeding occurs and at which HTC the patient is being treated, the patient is evaluated at either the emergency department, the outpatient clinic of the HTC or at a shared care hospital. Shared care hospitals are regional hospitals that work closely together with the HTC and have the ability to take over part of the care provided by the HTC, in order to provide care closer to the patient’s home. Here the bleeding is further investigated and treatment is administrated if required. If necessary, patients visit the HTC or shared care hospital multiple times over the course of several days to receive treatment until the bleeding is completely under control. Patients and/or caregivers who are able to administer treatment themselves are asked to rapidly first administer treatment at home. Patients with suspected head trauma or a severe bleeding episode are always required to come to the HTC or emergency department for further diagnosis and treatment. For all other bleeding episodes, the HTC will call the patient and caregivers every day to monitor the bleed and to schedule a consultation at the outpatient clinic, if necessary. In case of a muscle or joint bleed, all patients are seen by the pediatric physiotherapist and in all HTCs except HTC 2 a (point of care) ultrasound is used to confirm the location of the bleed and to monitor treatment response. Beside the similarities in the treatment and follow-up in case of (spontaneous) bleeding episode, there are also some differences across the HTCs. These differences are related to 1) whether the patient is first evaluated at the emergency department, the HTC or a shared care hospital, 2) presence of the pediatric HTC team at the emergency department, 3) with whom the patient and caregivers have a consultation during the treatment and follow-up of the bleeding episode, 4) type of consultation during the follow-up of the bleeding episode e.g., video, telephone or physical consultation, 5) availability and use of (point of care) ultrasound to diagnose and monitor joint and muscle bleeds by the pediatric HTC team, and 6) involvement of the pediatric physiotherapist in the treatment of bleeding episodes.

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