Complementary and alternative medicine in children with diffuse intrinsic pontine glioma—A SIOPE DIPG Network and Registry study. / SIOPE DIPG Network.
In: Pediatric Blood and Cancer, Vol. 68, No. 9, e29061, 09.2021.Research output: Contribution to journal › Article › Academic › peer-review
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TY - JOUR
T1 - Complementary and alternative medicine in children with diffuse intrinsic pontine glioma—A SIOPE DIPG Network and Registry study
AU - el-Khouly, Fatma E.
AU - Adil, Syed M.
AU - Wiese, Maria
AU - Hulleman, Esther
AU - Hendrikse, N. Harry
AU - Kaspers, Gertjan J. L.
AU - Kramm, Christof M.
AU - SIOPE DIPG Network
AU - Veldhuijzen van Zanten, Sophie E. M.
AU - van Vuurden, Dannis G.
N1 - Funding Information: The authors would like to thank the Semmy Foundation (Stichting Semmy) for financially supporting DIPG research in Amsterdam UMC. Publisher Copyright: © 2021 The Authors. Pediatric Blood & Cancer published by Wiley Periodicals LLC Copyright: Copyright 2021 Elsevier B.V., All rights reserved.
PY - 2021/9
Y1 - 2021/9
N2 - Introduction: Diffuse intrinsic pontine glioma (DIPG) is a rare and aggressive childhood brainstem malignancy with a 2-year survival rate of <10%. This international survey study aims to evaluate the use of complementary and alternative medicine (CAM) in this patient population. Methods: Parents and physicians of patients with DIPG were asked to participate in a retrospective online survey regarding CAM use during time of illness. Results: Between January and May 2020, 120 parents and 75 physicians contributed to the online survey. Most physicians estimated that <50% of their patients used CAM, whereas 69% of the parents reported using CAM to treat their child during time of illness. Cannabis was the most frequently used form of CAM, followed by vitamins and minerals, melatonin, curcumin, and boswellic acid. CAM was mainly used with the intention of direct antitumor effect. Other motivations were to treat side effects of chemotherapy or to increase comfort of the child. Children diagnosed from 2016 onwards were more likely to use CAM (χ 2= 6.08, p =.014). No significant difference was found between CAM users and nonusers based on ethnicity (χ 2= 4.18, p =.382) or country of residence (χ 2= 9.37, p =.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 patients with DIPG use CAM. Physicians should be more aware of potential CAM use and actively discuss the topic. In addition, more research is needed to gain knowledge about possible anticancer effects of CAM and (positive/negative) interactions with conventional therapies.
AB - Introduction: Diffuse intrinsic pontine glioma (DIPG) is a rare and aggressive childhood brainstem malignancy with a 2-year survival rate of <10%. This international survey study aims to evaluate the use of complementary and alternative medicine (CAM) in this patient population. Methods: Parents and physicians of patients with DIPG were asked to participate in a retrospective online survey regarding CAM use during time of illness. Results: Between January and May 2020, 120 parents and 75 physicians contributed to the online survey. Most physicians estimated that <50% of their patients used CAM, whereas 69% of the parents reported using CAM to treat their child during time of illness. Cannabis was the most frequently used form of CAM, followed by vitamins and minerals, melatonin, curcumin, and boswellic acid. CAM was mainly used with the intention of direct antitumor effect. Other motivations were to treat side effects of chemotherapy or to increase comfort of the child. Children diagnosed from 2016 onwards were more likely to use CAM (χ 2= 6.08, p =.014). No significant difference was found between CAM users and nonusers based on ethnicity (χ 2= 4.18, p =.382) or country of residence (χ 2= 9.37, p =.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 patients with DIPG use CAM. Physicians should be more aware of potential CAM use and actively discuss the topic. In addition, more research is needed to gain knowledge about possible anticancer effects of CAM and (positive/negative) interactions with conventional therapies.
KW - boswellic acid
KW - cannabis
KW - complementary and alternative medicine (CAM)
KW - curcumin
KW - diffuse intrinsic pontine glioma (DIPG)
UR - http://www.scopus.com/inward/record.url?scp=85105780018&partnerID=8YFLogxK
U2 - 10.1002/pbc.29061
DO - 10.1002/pbc.29061
M3 - Article
C2 - 33942498
VL - 68
JO - Pediatric blood & cancer
JF - Pediatric blood & cancer
SN - 1545-5009
IS - 9
M1 - e29061
ER -
ID: 18250522