Hemophilia care in the Netherlands: identification and visualization of the care pathway for young children with hemophilia

To improve hemophilia care, it is essential to gain more insight into how this care is currently provided. We aim to identify and visualize the care pathways for young children with hemophilia in the Netherlands. Metro Mapping methodology was used to co-design the care pathway for young children (age 0–8 years) with hemophilia, together with hemophilia healthcare professionals at hemophilia treatment centers (HTCs) in the Netherlands. The initial Metro Map was based on documentation about the current care process and was modified during multiple interactive sessions with at least one nurse practitioner/consultant or nurse and one pediatric hematologist from each HTC. The constructed Metro Map consisted of four layers: the metro line, context, discussed information and provided educational materials. The final Metro Maps describe seven phases of care and are mostly similar between the five participating HTCs. Differences were found in the type and frequency of consultations, involved healthcare professionals, organization of the outpatient clinic, medication delivery, collaboration with shared care hospitals to administer treatment, use of ultrasound methodology to diagnose joints and muscle bleeds, and activities the pediatric HTC team undertakes in case of bleeding episodes and planned medical interventions. This study comprehensively mapped the care pathways for young children with hemophilia in the Netherlands. Implementation of these care pathways may guide patients and their caregivers more transparently through the healthcare process and may stimulate continuous improvement of care.