Journal of Cancer Research and Clinical Oncology

, Volume 139, Issue 6, pp 1025–1031 | Cite as

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

  • Thomas Elsner
  • Ralph Muecke
  • Oliver Micke
  • Franz J. Prott
  • Karsten Muenstedt
  • Anita Waldmann
  • Jan Geissler
  • Jutta Huebner
Original Paper

Abstract

Purpose

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.

Methods

We developed a standardized questionnaire on CAM which was provided online to the representatives of the worldwide Chronic Myeloid Leukemia Advocates Network.

Results

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.

Conclusions

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.

Keywords

Patient advocacy Complementary and alternative medicine Patient information Chronic myeloid leukemia Risks and benefits 

Notes

Acknowledgments

We want to express our thanks to all patient advocates worldwide who supported this study.

Conflict of interest

The authors declare no conflict of interest.

Supplementary material

432_2013_1414_MOESM1_ESM.docx (41 kb)
Supplementary material 1 (DOCX 41 kb)

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Copyright information

© Springer-Verlag Berlin Heidelberg 2013

Authors and Affiliations

  • Thomas Elsner
    • 2
  • Ralph Muecke
    • 3
  • Oliver Micke
    • 4
  • Franz J. Prott
    • 5
  • Karsten Muenstedt
    • 6
  • Anita Waldmann
    • 7
  • Jan Geissler
    • 8
  • Jutta Huebner
    • 1
  1. 1.German Cancer SocietyBerlinGermany
  2. 2.J.W. Goethe UniversityFrankfurt/MainGermany
  3. 3.Department of RadiotherapyLippe HospitalLemgoGermany
  4. 4.Department of RadiooncologyFranziskus Hospital BielefeldBielefeldGermany
  5. 5.RNS Gemeinschaftspraxis, WiesbadenWiesbadenGermany
  6. 6.Department for Gynecology and ObstetricsUniversity Hospital GießenGießenGermany
  7. 7.Myeloma EuronetRüsselsheimGermany
  8. 8.CML AdvocatesMunichGermany

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