Shannon van Hoorn

203 The care pathway for young children with hemophilia in the Netherlands 7 2022-0287). Informed consent was obtained from all participants and written approval to publish the Metro Map was obtained from each participating HTC. Data collection: Development of the Metro Map Available documentation on the care process and care protocols was used to develop a first version of the Metro Map using the Microsoft Visio template building blocks 17. Adaptions were made to the layers of the original Metro Map to facilitate the use of Metro Mapping methodology for a chronic disease and to incorporate the hemophilia context (Figure 1). The modified Metro Map constructed within this study therefore consists of four layers 1) Metro line visualizing the entire care trajectory and the involved healthcare professionals, 2) Context providing extra background information about the steps mentioned within the metro line, 3) Information that is discussed between patients, caregivers and healthcare professionals, and 4) Educational materials that are provided to the patients and caregivers by the healthcare professionals. The first version of the Metro Map, based on the available documentation, formed the starting point of an iterative process of multiple interactive codesign sessions in which the Metro Map was adapted based on discussions with a nurse or nurse practitioner/consultant and pediatric hematologist from each HTC. These interactive co-design sessions took place either at the HTC or online via Microsoft Teams. During each session, the metro line and other layers within the Metro Map were discussed to determine if they accurately depicted the current healthcare process. Within this study, the ‘80-20 rule’ was applied, meaning that if a care process occurs in 80 percent of the patients it was depicted in the Metro Map. The 20 percent of patients that do not follow the mapped care pathway were seen as an exception. Subsequent to the interactive co-design sessions to create the Metro Map, one or more validation sessions were held with all healthcare professionals involved in the care for young patients with hemophilia at the HTC. The aim of these validation sessions was to finalize the Metro Map and to attain consensus, concomitantly identifying possible areas of improvement within the care pathway and creating support for its implementation in patient care within the HTC. The co-design and validation sessions were led by one researcher (ESvH, MSc), supported by a second researcher (CMAM, MD or SHRH, PhD). All researchers were female and at least one researcher with previous experience in qualitative

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