Importance of and Satisfaction with Information about Their Disease in Cancer Patients.

To learn more about information needs and satisfaction with provided information among cancer patients and whether dissatisfaction with information has any association with how therapy decisions are made. An online survey was conducted during March 2015 and January 2016 by the German non-profit patient organization "Das Lebenshaus e.V." among their members with rare solid tumors. A total of 338 records was analyzed. The majority found information on their disease important and was satisfied with the provided information. The participants were less satisfied with the information concerning management of side effects than with other aspects of information (p < .001). Support groups, lectures, and the oncologist were rated as the most helpful sources of information followed by a second opinion and media. Participants who were dissatisfied with the information more often made the decision on the treatment alone by themselves (p < .001). Our results show a high satisfaction with disease-related information among our study participants. Improvements could be made by offering more information on the management of side effects and by giving more information about support groups, reliable websites, and other helpful media.

Not all cancer patients with an interest in CAM are the same. Differences between patients with a CAM interest prior to the cancer diagnosis and those with first-time interest since diagnosis.

OBJECTIVES: The aim was to assess differences in age, gender, education and personality (Big Five) between cancer patients already interested in CAM prior to the diagnosis and cancer patients only interested in CAM since their diagnosis. DESIGN: 323 members of the support and information platform "Lebenshaus e.V." with gastrointestinal stromal tumours (GIST), renal cell carcinomas (RCC) and sarcomas participated in an online survey. MAIN OUTCOME MEASURES: Interest in CAM prior to cancer diagnosis, CAM interest since diagnosis, CAM use and disclosure of CAM use to doctors. RESULTS: 39% were already interested in CAM before the diagnosis and 40.6% were first interested in CAM after their diagnosis. 44.9% stated a current/past CAM use. Female gender and high education were significant predictors for interest in CAM before the diagnosis and general CAM use. The Big Five did not become significant predictors. Predictors were different for patients interested in CAM before the diagnosis and patients only interested since the diagnosis. Sarcoma patients were significantly more likely to be interested in CAM after the diagnosis than patients with GIST. Disclosure of CAM use could not be predicted by sociodemographic variables and personality. CONCLUSION: Known predictors for interest in CAM such as female gender, higher education and younger age do not seem to apply in cancer patients with no prior CAM affinity. This result together with a high CAM prevalence raises the importance of addressing CAM in all cancer patients for a need-oriented treatment and to avoid side effects and interactions with conventional treatment.

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.