Shannon van Hoorn

207 The care pathway for young children with hemophilia in the Netherlands 7 The annual consultation at the outpatient clinic for patients on prophylaxis is similar across all five HTCs, and consists of a consultation with the pediatric hematologist, a consultation with the nurse, nurse practitioner or nurse consultant, a consultation with the pediatric physical therapist, and a blood withdrawal to check for inhibitor development. Besides this similarity in the composition of the annual consultation for patients that receive prophylactic treatment, all five HTCs have organized their followup differently. Differences were found in 1) whether a consultation is optional or mandatory, 2) the type of consultation e.g. telephone or physical consultation, 3) the number of healthcare professionals that the patient has a consultation with during their annual, semi-annual or additional optional consultation, and 4) with whom the patient has a consultation during their visit to the outpatient clinic. HTC 1, HTC 3 and HTC 5 also organize an alternative additional outpatient clinic visit. HTC 1 and HTC 5 organize a carrousel outpatient clinic while HTC 3 organizes a family outpatient clinic as shown in the Additional files 1, 3 and 5. At HTC 1 patients are invited to visit the carrousel outpatient clinic right after diagnosis and before the patient starts primary school (i.e. around the age of 4). During the carrousel outpatient clinic the patient and caregivers visit the pediatric hematologist or nurse practitioner, the pediatric physical therapist, the social worker and the pediatric psychologist. In contrast to HTC 1, patients on prophylaxis visit the carrousel outpatient clinic of HTC 5 annually. During the carrousel outpatient clinic the patient and caregivers have a joint consultation with the pediatric hematologist and the physical therapist, and a separate consultation with the nurse and social worker. The family outpatient clinic is organized once a month at HTC 3 and patients are invited to visit this outpatient clinic when multiple family members within one household are diagnosed with a bleeding disorder. During this outpatient clinic the patient and his/her affected family member(s) have a joined consultation with both the hematologist and pediatric hematologist, and a joined consultation with the nurse consultant and pediatric nurse consultant. Bleeding episodes Patients and caregivers are instructed to contact the HTC when there is (a suspicion of) a bleeding episode. We found that at all HTCs, the care trajectory patients with a (suspected) bleed follow depends on the type and severity of the bleed, and if the patient or caregivers are able to administer treatment at

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