Dutch study maps care pathways for children with hemophilia

A co-design study involving five hemophilia treatment centers in the Netherlands identified seven phases of care for children aged 0 to 8 years with hemophilia. The resulting maps were broadly similar across the participating centers but also documented differences in consultations, staffing, outpatient organization, medication delivery, hospital collaboration, ultrasound use and responses to bleeding or planned medical interventions.

The research used a method called Metro Mapping to identify and visualize the care pathways for young children with hemophilia. Researchers developed an initial map from documentation describing the current care process, then revised it through multiple interactive sessions with healthcare professionals at the five participating hemophilia treatment centers, known as HTCs.

Each interactive session involved at least one nurse practitioner, consultant or nurse and one pediatric hematologist from every participating HTC. The professionals contributed to the construction of a shared visual representation of care, while also identifying where their centers’ practices differed. The method was therefore designed to combine existing documentation with input from professionals directly involved in care.

The completed Metro Map contained four layers: a metro line representing the care pathway, a context layer, a layer showing the information discussed with families, and a layer identifying educational materials provided. Together, these layers present the sequence of care alongside the organizations, communications and resources associated with it.

Despite a common structure, the study found variation in how care was organized. The five centers differed in the type and frequency of consultations, the healthcare professionals involved, and the organization of outpatient clinics. Medication delivery also varied, as did collaboration with shared-care hospitals to administer treatment.

Other differences concerned diagnostic and clinical practices. The centers did not use the same ultrasound methodology to diagnose joint and muscle bleeds. The maps also recorded variation in the activities undertaken by pediatric HTC teams during bleeding episodes and in preparation for planned medical interventions. These findings describe differences among the participating centers rather than demonstrating that one approach was more effective than another.

The study focused on care for children from birth through age 8 and was conducted in five Dutch HTCs. The authors described the final maps as a comprehensive representation of care pathways for young children with hemophilia in the country. However, the research was a pathway-mapping and co-design study rather than a trial comparing clinical outcomes, and the results do not show that implementation of the maps changes bleeding frequency, treatment adherence, costs, survival or other patient outcomes.

The researchers proposed that implementing the care pathways could help guide patients and caregivers more transparently through the healthcare process and could support continuous improvement in care. The maps also provide a visual account of where the participating centers currently differ, including outpatient structure, professional involvement, medication supply, collaboration with shared-care hospitals and activities during bleeding episodes. Whether and how those differences should be changed was not evaluated by the study.

Subject of Research: Visualization of hemophilia care pathways for children aged 0 to 8 years in five Dutch treatment centers

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

Article References: van Hoorn, E. S., Mussert, C. M. A., Gouw, S. C., Beijlevelt, M., van der Velden-van ‘t Hoff, C., Andeweg, S., Jansen, M. E., Hooimeijer, H. L., Liem, C., Loo, M. W. T., Kremer Hovinga, I. C. L., Menninga, K. E., Albayrak, A., Ahaus, K. C. T. B., Reitsma-Houtman, S. H., Cnossen, M. H., Lingsma, H. F., & the PARTITURA & SYMPHONY consortia (2026). Hemophilia care in the Netherlands: identification and visualization of the care pathway for young children with hemophilia. BMC Health Services Research. https://doi.org/10.1186/s12913-026-15185-8

Image Credits: AI Generated

DOI: 10.1186/s12913-026-15185-8

Keywords: hemophilia, child health, care pathways, health services research, Netherlands, treatment centers, co-design, Metro Mapping, ultrasound, clinical organization, care, identification