• Ja

This thesis explores stakeholders' perspectives on decision making in hematopoietic stem cell transplantation (HSCT). HSCT is an established, curative treatment option for patients with a hematologic disease, inborn error of immunity or metabolism, or bone marrow failure syndrome. Despite improved outcomes, HSCT carries significant risks, making decision-making complex, especially when comparing oncological or acute non-oncological diseases with non-acute conditions. For oncological or acute cases, HSCT is often a life-saving option. At the same time, it may be chosen over conservative treatments due to its curative potential in non-acute diseases like transfusion-dependent β-thalassemia (TDT) and sickle cell disease (SCD). However, while HSCT is standard for TDT, no global consensus exists for its use in SCD, leading to varied clinical practices and personal preferences. This creates a need for shared decision-making (SDM), involving patients and healthcare professionals (HCPs) in the treatment process, especially in cases where there is no clear best option. This thesis aims to enrich the existing knowledge on decision making for (pediatric) patients with in-depth insights into the perspectives of patients, caregivers, and healthcare professionals considering an HSCT when there is no clear-cut answer on the best option for the individual patient.

• Uploading his/her dissertation and additional information the author agrees with publication on this website. The author should in advance obtain permission from any other copyright holders for publication on this site.