LAUSR

Abstract INTRODUCTION Diffuse intrinsic pontine glioma (DIPG) is a rare and aggressive childhood brainstem malignancy with a two-year survival rate of ≤10%. In this international survey study we aim to evaluate the use of complementary and alternative medicine (CAM) in this patient population. METHODS Parents of-, and physicians treating DIPG patients were asked to participate in a retrospective online survey with questions regarding CAM use during time of illness. RESULTS 120 parents and 75 physicians contributed to the online survey between January and May 2020. Physicians estimated that <50% of their patients used CAM, whereas 69% of the parents reported to have used CAM to treat their child during time of illness. Cannabis was the most widely used form of CAM, followed by vitamins and minerals, melatonin, curcumin and boswellic acid. CAM was mainly used to actively treat the tumor. Other motivations were to treat side effects of chemotherapy, or to comfort the child. Children diagnosed ≥2016 were more likely to use CAM (χ2=6.08, p=0.014). No significant difference was found between CAM users and non-users based on ethnicity (χ2=4.18, p=0.382) and country of residence (χ2=9.37, p=0.154). Almost 50% of the physicians do not frequently ask their patients about possible CAM use. CONCLUSION This survey demonstrates that worldwide a considerable number of DIPG patients use CAM. Physicians should be more aware of potential CAM use and more actively discuss the topic. More research is needed to gain knowledge about possible anticancer effects of CAM and their interactions with conventional therapies.