Treatment of gestational trophoblastic disease beyond borders

In this thesis, we evaluate the management of Gestational Trophoblastic Disease (GTD) including Gestational Trophoblastic Neoplasia (GTN) in the Netherlands and Europe. GTD is a group of pregnancy-related disorders, ranging from premalignant forms such as complete and partial hydatidiform moles to malignant forms including invasive mole, choriocarcinoma, placental site trophoblastic tumor (PSTT) and epithelioid trophoblastic tumor (ETT). The term GTN refers to the malignant counterparts. As GTD is rare, reliable patient information about GTD is largely lacking. To improve patient information, we developed an online tool that provides information about the diagnosis and treatment of GTD. In a randomized controlled trial, we evaluated the impact of this web-based intervention on knowledge, illness perception, levels of distress, and patient satisfaction. The rarity of GTD has also caused differences in diagnosis, treatment and follow-up of GTD in Europe and we evaluated the differences in diagnostic and treatment protocols of 17 European countries. One of the still underexposed problems in GTD is the adequate risk assessment of lung metastases which are generally considered to be low-risk, but still can change the course of disease significantly. We described the influence of lung metastases on the course of disease in a centralized population treated in a specialized trophoblastic disease center. Also, the most optimal way to treat ultra-high-risk disease and the use of high-dose chemotherapy (HDC) and how to treat ETT optimally, are still matters of debate. We evaluated the effect of HDC with peripheral blood stem cell support on survival of GTN patients with a poor prognosis and reported the largest case series in literature with common characteristics, potential prognostic factors and outcome of treatment of 54 patients with ETT. In the discussion we elaborate on how the Netherlands and the rest of Europe currently manage rare diseases such as GTD and what steps need to be taken in the future to bring GTD and GTN care to a higher level.