212 Chapter 7 Netherlands. For example, depending on the pediatric HTC team composition and location of the pediatric hematology department within the hospital, tasks such as the administration of treatment is performed by either the nurse, nurse practitioner, nurse consultant or the nurse from the inpatient clinic. Similar, due to their geographical location in the Netherlands HTC 3 and HTC 4 are more likely to offer patients the possibility of receiving treatment at a shared care hospital. Healthcare processes and especially hemophilia care is inherently dynamic, complex, multidisciplinary and variable 1,20,21. HTCs and healthcare professionals need to adapt their care provision to each individual patient’s needs while also considering their own organizational, resource and geographical constraints 1,22. Care processes evolve over time and practice variations can be warranted and even stimulated as long as they do not negatively influence patient outcomes 22. Since many of the identified differences can be linked to warranted practice variation aimed to provide the best possible care given the HTC specific resource constraints, we do not expect that these differences negatively influence patient outcomes or the quality of care provided at each HTC. Strengths and limitations This study is the first to provide an in-depth analysis and visualization of how care is provided to young patients with hemophilia and their caregivers in the Netherlands. To our knowledge, similar studies in other countries have not been performed on this scale, making this study describing the care trajectory of young patients with hemophilia the first on both a national and international level. This study also has some limitations. Firstly, this study includes the Metro Maps of five of the in total six HTCs in the Netherlands. Four of these HTCs are located within one hospital building. The other HTC, HTC 4, provides care for patients with inherited bleeding disorders across three different hospitals within the region, which together form one HTC. Within this study, we were only able to create a Metro Map for one of these three locations. In addition, although we have included the majority of the HTCs, we were unable to visualize and analyze the care provision for all young patients with hemophilia in the Netherlands. However, we do not expect that the Metro Map of the other HTC or the other locations of HTC 4 significantly differs from the Metro Map we have created for the other HTCs.
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