211 The care pathway for young children with hemophilia in the Netherlands 7 professionals of the other HTCs. Similar, at HTC 3 healthcare professionals refer patients and caregivers to specific websites for SOS bracelets, while other HTCs do not mention these websites specifically. Moreover, HTC 1 is the only HTC that has incorporated patient-reported outcome measures in their routine care provision. Starting from the patient’s second birthday, both the patient and caregivers are asked to annually complete a quality-of-life questionnaire. The results of this questionnaire are then discussed during the annual consultation. DISCUSSION Using Metro Mapping methodology, our study highlights the care trajectory young patients with hemophilia aged 0-8 years and their caregivers follow within the majority of hemophilia treatment centers (HTCs) in the Netherlands. We described four chronological phases of care from referral, diagnosis, treatment to follow-up, and three separate hemophilia specific care pathways for the care processes around bleeding episodes, inhibitor development and planned medical interventions, including the input of all involved healthcare professionals and the information provision in each phase. All five HTCs provide care according to the World Federation of Hemophilia and Dutch treatment guidelines 10,18,19. Overall, young patients with hemophilia and their caregivers follow similar care trajectories, and receive information and education on the same topics regardless of where they are being treated. Therefore, a standard care pathway could be established. While there were many similarities among the Metro Maps of the five HTCs, there are also some differences. These difference could be found in 1) type and frequency of consultations, 2) which healthcare professional is involved during each step within the care pathway, 3) organization of the outpatient clinic, 4) option for medication delivery, 5) collaboration with shared care hospitals to administer treatment, 6) use of ultrasound technology to diagnose joints and muscle bleeds, and 7) activities the pediatric HTC team undertakes in case of bleeding episodes and planned medical intervention. Most of these differences could be attributed to variations in 1) team composition, 2) task differentiation among healthcare professionals within each pediatric HTC team, 3) location of the pediatric hematology department within the hospital, and 4) geographical location of the HTC within the
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