213 The care pathway for young children with hemophilia in the Netherlands 7 Secondly, differences in the available documentation about the care process and the nature of the interactive co-design session with only one or two representatives of the pediatric HTC team might have led to an incomplete Metro Map. In particular, this might be the case for the layers information discussed and educational materials provided. We have tried to mitigate this risk by organizing at least one validation session with all healthcare professionals involved in the care for young patients with hemophilia at each HTC. During these validation sessions, the multiple viewpoints and experience of the various healthcare professionals were discussed and combined to design a, as accurate and complete as possible, final version of the Metro Map. Thirdly, the Metro Maps presented in this study only represents the care trajectory for very young patients with hemophilia, aged 0-8 years, and their caregivers, which is just the beginning of their life-long care pathway within hemophilia care. From the age of 8 years old, increasingly attention will be paid to the patient’s autonomy as patients learn how to administer treatment themselves and the healthcare focus is increasingly being shifted from selfefficacy of the caregiver to that of the patient 10. Lastly, the Metro Mapping methodology was created for co-designing care pathways in a person-centered, holistic, iterative way with interactive involvement of patients, healthcare professionals and quality-of-care staff 13,14. In this study, we did not invite patients to participate in the co-design sessions and could therefore not include the layer current experiences of patients, significant others and healthcare professionals in our Metro Maps. Instead, we placed more emphasis on the information that is needed during every phase of the care pathway. However, we expect the influence of not including patients in the construction of the separate Metro Maps to be limited, since we focused on the identification of the current care trajectory within the HTC and not yet on patients and caregivers’ experiences with the provided care. Implications for research and practice The identification and the visualization of the care pathway and the available information provision for young patients with hemophilia is the first step towards improving hemophilia care. The implementation of the care pathway in clinical practice could potentially improve communication between patients, caregivers and their treatment team but also among the pediatric HTC team 23,24. The care pathway could be used to guide patients and their caregivers more transparently through the healthcare process, which increases
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