Information needs and usage of complementary and alternative medicine in members of a German self-help group for gastrointestinal stroma tumours, sarcoma, and renal cancer

Objective: 40-50% of German cancer patients use some method of complementary and alternative medicine (CAM) and both patients and doctors often feel insufficiently informed, We examined the information-seeking behaviour and satisfaction with information on patients' interest in CAM and the therapy decision. Design and Setting: An anonymous, voluntary online survey was conducted among the members of "Das Lebenshaus e.V." (House of Life), a decentralized support group for patients with gastrointestinal stroma tumours (GIST), sarcoma, and renal cancer. Data was collected from March 2015 until January 2016 using closed questions with multiple choice if appropriate and in case of ranking, a 5-point Likert scale. Interventions: None. Main Outcome Measures: Correlations between CAM interest, usage, information needs, sources of information and therapy decision were calculated using chi square tests for univariate analyses. Results: Overall, 431 patients took part in our survey, thus return rate was 19.6%. 43.9% (n = 189) of the participants were female, 37.1% (n = 160) were male, 19.0% (n = 82) did not respond. Mean age was 59.8 years. The most common tumours were GIST (346%, n = 149), renal cancer (22.3%, n = 96) and sarcoma (20.0%, n = 86). 55.2% (n = 138) of the respondents were patients undergoing treatment, 19.7% (n = 85) were after treatment, 2.6% (n = 11) were relatives and 4.4% (n = 19) others while 18.1% (n = 78) did not respond. A total of 81.8% (n = 337) of the participants were interested in CAM, but only 44.7% (n = 152) used one of the methods. Women were more commonly interested in CAM (87.2%, n = 163) and used it more often: 53.0% (n = 97) vs. 36.2% (n = 55). Information about CAM was considered important by 85.5% (n = 360) and the Internet was the most commonly used source for information about CAM (77.9%, n = 205). However, 61.4% (n = 233) were not satisfied with the information received about CAM, especially from doctors and hospitals. Patients unsatisfied with the information they had formally received about the course of their disease significantly more often used CAM (p = 0.029). Users would also make the therapy decision by themselves more often (p = 0.036). Nearly a fifth did not disclose their use to a doctor. Conclusions: Dissatisfaction with received information reveals a strong need for scientific information to be available to both patients and doctors. Physicians should get special training about CAM. As the Internet is an important source, high-quality and scientific information should be portrayed on webpages easily accessible to patients.