Survey on the worldwide Chronic Myeloid Leukemia Advocates Network regarding complementary and alternative medicine

Many cancer patients use complementary and alternative medicine (CAM). However, data in hematological cancers are lacking on which types of CAM are being used, what information sources on CAM patients use and to what extent CAM is being addressed in the consultation with the hematologist. We developed a standardized questionnaire on CAM which was provided online to the representatives of the worldwide Chronic Myeloid Leukemia Advocates Network. A total of 53 leaders of patients' advocacy groups for chronic myeloid leukemia (CML) patients from 35 countries responded to the survey. In almost all countries, CAM is important for CML patients and is widely used in addition to conventional leukemia treatment. Mostly, patients have to pay by themselves. General practitioners, herbalists, healers and naturopaths are the main sources for CAM treatments. Information on CAM is derived most frequently from the Internet, and family and friends, but rarely provided by the oncologist. Disclosure of CAM use to the oncologist is low, but increases if oncologists offer CAM. In spite of very different health care systems, the features of CAM usage are similar in the different countries. We suggest extending the cooperation of self-help and scientists in order to provide training of oncologists on CAM and quality-controlled, evidence-based information on CAM on the Internet both for patients as well as health professionals as a promising strategy to increase safe use of CAM in patients with CML.