Hemophilia, a bleeding disorder, is divided into types A and B, resulting from coagulation factors VIII and IX deficiencies. The levels of these clotting factors in the body determine the severity of hemophilia. The classification includes severe, moderate, and mild hemophilia. Managing hemophilia involves options like on-demand and prophylactic treatment. A key part of managing this condition involves Hemophilia Treatment Centers (HTCs) as the primary healthcare providers for patients.

The HTC at Erasmus MC is one of the six centers in the Netherlands. It offers comprehensive care for adults and children with hemophilia and other rare bleeding disorders. In the pediatric department of Erasmus MC's HTC, children with hemophilia attend multiple outpatient clinic visits annually. During these visits, patients and their caregivers receive education about the bleeding disorder, its treatment, and potential consequences. However, grasping the information during these visits can be challenging, especially as most of it is conveyed verbally. This poses a particular difficulty for patients and caregivers with lower literacy levels.

To enhance the information provided to hemophilia patients and caregivers, HTCs must offer comprehensive support to ensure patients understand the information communicated during outpatient clinic visits. Improving information provision in these contexts aims to make significant progress towards a future where patient information and education are improved, resulting in better outcomes for those living with hemophilia.

This graduation project involved conducting research through literature reviews, analyzing materials, observing HTC's operations, and interviewing healthcare professionals, patients and their caregivers, and relevant stakeholders. The findings revealed several pain points regarding the current information provision. These areas include the information exchanged during outpatient clinic visits and the accessibility of provided information outside of these visits. Consequently, two solutions were developed: an information tool named "Samen Spraak," designed to enhance information exchange between healthcare professionals and parents by introducing interactivity and structure during consultations. This tool is then detailed in a strategy outlining a digital solution's implementation roadmap.

Based on this developed tool and strategy, it is advisable to classify it under the Dutch Association for Hemophilia Patients (NVHP) for further implementation and testing. Future research could explore expanding the approach to other blood clotting disorders across all age groups.

For hemophilia patients, a simple fall or injury can cause excessive bleeding, which if not handled properly can cause major disabilities and in extreme situations even death. Due to the insufficient blood coagulation factors in their system, a fun day can easily end in the emergency room. Children, by nature, are still learning how to move and navigate the world. Where an adult may know the consequences of their actions, a child may not be able to see that, and therefore are an especially vulnerable group. With many challenges in their daily life, children with hemophilia have a complex experience with the disease. In collaboration with Partitura and the Sophia Childrens Hospital, the goal of the project is to analyze the experience of severe hemophilia patients aged 0 to 8, visualize this in the form of a patient journey built from their perspective and find opportunities and patterns in the experience to eventually create a proposal for an intervention to improve quality of life.

A patient journey was created, in order to visualize this complex experience. The journey showed that there were definitely opportunities for improvement, giving an overview of the different touchpoints the patient goes through in the 3 main phases, (1) diagnosis, (2) treatment and (3) living with hemophilia.

The patient journey, as well as various methods of research including a literature review, observations in the outpatient clinic and interviews with healthcare professionals, parents and patients showed that children want to feel more in control of their disease, and have more structure/predicability in their experience with hemophilia. Especially the 3 main contact areas of the patient, (1) home, (2) the outpatient clinic and (3) the emergency room, provided room for these needs to be met.

Based on the research outcomes, a design goal was formulated for the creation of an intervention: To design an intervention for children with severe hemophilia aged within the range of 0-8 years, that helps empower them and help them better comprehend their journey with the disease, by providing structure, consistency and control. 3 concepts were created, all serving the different contact areas of the patient, with the overarching purpose of helping the child be more involved and active in his healthcare. The concepts were designed as seperate interventions, which can be combined and used together to strengthen each other by improving the patient experience in the different areas of the child’s life. The evaluation sessions, carried out with parents and healthcare professionals showed that the concepts had a lot of potential, and was met with great enthousiasm. This project concludes with recommendations for the next steps, for the implementation of the interventions and also further research opportunities in the experience of children with hemophilia. The next steps for the project will be to prepare for implementation, with interest to implement nationally, and eventually to aid in improving the patient experience of children with severe hemophilia, not only in the context of the Sophia Children’s Hospital but all patients of the Netherlands.