214 Chapter 7 their understanding of the healthcare process enhancing patient satisfaction, patient empowerment and perceived quality of care 11,25. Moreover, the identification and sharing of care pathways among the HTCs both on a national and international level stimulates transparency and continuous learning to further improve hemophilia care. Within this study, we focused on identifying and visualizing the care pathway for young patients with hemophilia. Further research should extend the Metro Maps to include the entire care trajectory that patients with hemophilia follow as supported by the pediatric and subsequently adult treatment teams of the HTCs. In addition, in line with the original Metro Mapping methodology, the Metro Maps can be enriched to include patient, caregivers and healthcare professionals’ experiences with the current care provision to identify possible areas of improvement. Moreover, the identified differences within this study provide an incentive to investigate patient experiences with care and the different organizational structures as well as the influence these differences might potentially have on patient outcomes. Furthermore, as described in the 4D PICTURE project Metro Maps can form the basis of several tools aimed to improve shared decision making15. We therefore hope to apply the developed Metro Maps for future research supporting implementation and (economic) evaluation of new guidelines and healthcare processes, treatment modalities, e-health interventions, decision-support tools, and other healthcare innovations with the aim to improve the care delivery for patients with hemophilia 11,12,15. CONCLUSION Using Metro Mapping Methodology, this study described and visualized the care pathway young patients with hemophilia and their caregivers follow within the majority of hemophilia treatment centers in the Netherlands. Young patients with hemophilia and their caregivers follow relatively similar care trajectories and receive education and information on the same topics. The identified care pathway consists of seven different phases which describe the healthcare process as related to referral, diagnosis, follow-up, and the occurrence of bleeding episodes, inhibitor development and planned medical interventions. Further implementation of these care pathways may guide patients and their caregivers more transparently through the healthcare process, stimulate continuous care improvement and support (economic) evaluation of healthcare innovations and healthcare processes.
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