Abstract
Background: In Europe about 40% to 50% of patients with cancer use complementary or alternative medicine (CAM). Only scarce data regarding the use of CAM have been reported from comprehensive cancer Centers. Patients and Methods: We carried out a survey on patients attending the counseling Unit for CAM of a German comprehensive cancer Center using a standardized questionnaire. Results: A total of 165 patients participated in the survey; 60% had already used CAM. Trace elements and vitamins were most often used. Strengthening oneself and one's immune system were the two main reasons (73% and 69% respectively for CAM use). The most important sources of information are print media and physicians (41% and 35% respectively). The two main reasons for using CAM were practitioners spending more time with patients and patients having experienced positive effects from CAM. Conclusion: For patients with cancer becoming active is an important goal, while disappointment in conventional medicine is not. Accepting patients' motivation for autonomy may help oncologists to increase adherence to conventional therapy.
Patients with cancer often seek additional so-called complementary or alternative treatments (CAM). The reasons are diverse: becoming active themselves as CAM often consists of treatments they may apply by themselves, not wanting to omit a treatment option, strengthening their immune system, avoiding or reducing the side-effects of cancer treatments. In German-speaking countries, about 40% of patients with cancer use some type of CAM (1). More recent data from Germany indicate up to 90% of users in cases of breast cancer patients (2). Data from comprehensive cancer Centers in the USA are similar, with about 70% of patients using CAM, most of them being biological-based CAM (3). This means that physicians may encounter side-effects of CAM use and interactions with conventional therapy. Most often used sources of information regarding CAM are family and friends and not the physician (4-6). Most patients do not disclose using CAM to their oncologist and many use non-medical professionals in order to get a prescription for CAM (7). Yet, in Germany, physicians are most often responsible for recommendations and prescriptions of CAM (8). On the other hand most medical students and physicians do not feel sufficiently trained in CAM to counsel cancer patients in their use (9-10).
In 2010, a unit for counseling on CAM was established at the comprehensive cancer center in Frankfurt/Main, Germany. Out-patients from hospitals and practices of the Rhine-Main region and even some patients from other regions joined for counseling. Some patients were sent by their oncologists while others got knowledge of the Institution by articles, broadcasts or lectures.
Before counseling, all out-patients who came for counseling for a period of 6 months after full establishment of the Unit were asked about CAM. The aim of this survey was to gather information on attitudes, experiences, actual user rates and aims of patients who turn to counseling at a comprehensive cancer Center.
Patients and Methods
A group of experts of the Working Group for Prevention and Integrative Oncology of the German Cancer Society developed a standardized questionnaire on CAM. The first part of the questionnaire is comprised of demographic data, data on lifestyle and the patient's own rating regarding the reason for developing cancer. The second part is comprised of goals for using CAM and sources of information are the main focus, followed by a list of most often used CAM methods in Germany, in which patients are asked to mark which methods they use. This list is based on published data concerning the patients' behavior regarding CAM.
This questionnaire was tested in a pre-test with out-patients in 2010 (Prof. Kleeberg) with 25 patients. No changes were necessary to finalize the questionnaire.
In 2011 over a period of six months every patient who attended the out-patient Unit was provided with the above-mentioned questionnaire before counseling. The questionnaire was returned anonymously. All patients were informed that filling in and returning the questionnaire would not have any influence on the counseling procedure.
The study was approved by the Ethic Committee of the University Hospital Frankfurt/Main.
Statistics. IBM SPSS 20 was used for the data analyses. The analysis of frequencies and cross tables was performed with Chi-square tests.
Results
The survey took place over a period of six months from June to November 2011. In total, 165 patients participated in the survey; this represents 96% of all patients who attended the out-patient unit. The median age of participants was 44 years, with a range from 28 to 77 years. Table I provides a summary of the demographic data.
Considering lifestyle and support, we asked patients regarding adherence to healthy nutrition, physical activity, risk factors (smoking and alcohol consumption) and support in the form of a psychologist or a self-help group. Table II provides a summary of the data.
As beliefs and assumptions on etiology of a disease may influence treatment decisions of patients, we asked the participants what they thought was the cause of their cancer. The different etiological assumptions are presented in Table III. Most patients (83; 50.3%) were convinced that stress was the main factor. Only 10 (6%) and 11 (7%) respectively believed unhealthy diets or smoking and alcohol being the reason for the cancer.
Demographic data.
There were no statistically significant correlations between the etiological concept and demographic data (age, gender, education, relationship and religion). Yet, women more often assumed smoking or alcohol being the reason for cancer (p=0.028). There was also no correlation between different parameters of lifestyle and assumed reasons for cancer. Those who sought help by a psycho-oncologist more often believed in stress being a reason for cancer (p=0.033).
Out of the participants, 99 (60%) admitted to using CAM; about one third, 64 (39%) did not use CAM. About half of those who used CAM declare that “they felt better” afterwards. The rest of the participants did not make this positive statement. There were no differences concerning age or gender or other characteristics of the patients regarding CAM use or experienced results.
Lifestyle and support of the participants.
Participants had different reasons for using CAM. The answers are summarized in table IV (multiple answers were possible for this question). Strengthening oneself and one's immune system were the two main reasons (120 patients (73%) and 114 patients (69%), respectively). In order to have the feeling of doing something for themselves was the aim for 81 patients (49%) and fighting cancer was the reason for 59 (36%) participants.
There were no correlations between reasons for CAM use and age, gender, education, relationship and religion. There was also no correlation between different parameters of lifestyle and reasons for CAM use. Those patients who adhered to a healthy diet, significantly more often wanted to strengthen their immune system (p=0.018) and those receiving counseling from a psycho-oncologist significantly more often aimed to do something good for themselves (p=0.02). Additionally, patients who were convinced that stress was a possible cause of cancer more often used CAM in order to strengthen themselves (p=0.023).
Sources of information participants had used before attending the out-patient unit are summarized in Table V. The most important sources of information were print media (67 patients; 41%) followed by the physician (57 patients, 35%). Pharmacists were rarely consulted (5 patients, 3%).
There were no differences concerning source of information depending on age or gender, education, relationship and religion. Among patients with higher education there was a non-significant trend in favor of use of the internet (p=0.051), while those with lower education tend to prefer TV and radio (p=0.064) as source of information. There were no correlations between different parameters of lifestyle and source of information.
In the next step, a list of complementary and alternative therapies was presented and the participants were asked to mark those they actually used. Data are summarized in Table VI. Supplements such as trace elements and vitamins were most often used. Prayer was the third most often used method followed by relaxation techniques.
Also in this part of the questionnaire we also did not find significant differences regarding age groups, gender, education, relationship and religion. Women more often used prayer (p=0.019), as did those belonging to a religion (p<0.001) who also preferred relaxation techniques (p=0.035). In contrast, patients with higher education used prayer less often (p=0.035). There were almost no correlations between different parameters of lifestyle and usage of CAM. Yet smokers and those admitting to drinking alcohol more often used vitamin C (p=0.001 and p=0.014 respectivley). Patients who received counseling from a psycho-oncologist use acupuncture (p=0.010), meditation (p=0.001), prayer (p<0.001) and yoga (p=0.006) more often.
Beliefs regarding etiology of cancer.
Reasons for using CAM.
Sources of information of the participants regarding CAM.
CAM methods used by the participants.
Some correlations between etiological concept and CAM usage can be seen. Patients believing in genes being the reason for cancer use vitamin C (p=0.027) more often and meditation (p=0.026) or prayer (p=0.037), bioresonance (p=0.007), hyperthermia (p=0.029) or anthroposophical medicine (p=0.033) less often. They also reported feeling better after using CAM (p=0.042) less often. On the other hand, they informed the physician of their use of CAM (p=0.025) more often. Those participants who believed in environmental factors as the cause of cancer used Chinese herbs (p=0.025) and relaxation techniques (p=0.007) significantly more often and meditation (p=0.047) or prayer (p=0.023) less often. Patients who believed stress to be the reason for cancer used vitamin C (p=0.009), trace elements (p=0.016), mistletoe (p=0.047), enzymes (p=0.012), acupuncture (p=0.002), Chinese herbs (p=0.022), meditation (p=0.002), prayer (p=0.006) and relaxation techniques (p=0.004) more often. Those who considered unhealthy diet as being the reason for cancer consume trace elements (p=0.039) significantly more often, but not vitamin C or other supplements. Yet, they used acupuncture (p=0.005) and Chinese herbs (p=0.013) more often.
In order to strengthen the immune system, patients took vitamin C (p=0.020) and use yoga, tai chi or qigong (p<0.001), whereas they do not use anthroposophical medicine for this reason (p=0.001). Patients aim at strengthening themselvesusing vitamin c (p=0.028), selenium (p<0.001), other supplements (p=0,050), yoga, tai chi or qigong (p<0.001). In order to de-toxify, they used enzymes (p=0.019) or acupuncture (p=0.018), Chinese herbs (p=0.035), homeopathy (p=0.015), relaxation techniques (p=0.001), yoga, tai chi or qigong (p<0.001). Enzymes were taken as direct therapy against cancer (p=0.018) as are prayers (p=0.017). In contrast, yoga, tai chi and qigong are not used for this reason (p<0.001). Selenium and acupuncture (p=0.018 and p=0.017 resp.), Chinese herbs (p=0.003), meditation (p=0.038), relaxation techniques and yoga, tai chi or qigong (p<0.001 both) were used in order to do something for oneself.
The answers of the participants regarding a list of different attitudes toward conventional medicine and CAM are presented in Table VII. Nearly half of the patients said they would use conventional treatments and CAM in parallel in case they had a disease that was not clearly defined. The two main reasons for use of CAM were that practitioners take more time to talk to the patient and that participants experienced positive effects from CAM. In contrast, disappointment in conventional medicine was not an important reason
We did not find any correlations between agreement with these statements and age, gender, education, relationship and religion. Women agreed with “non-medical professionals and naturopaths having a deeper understanding of my illness” (p=0.018) more often. There was a highly significant association between a high level of education and the statement that the patient only relied on scientific methods (p=0.001). Interestingly, patients with higher education also more often stated that they experienced positive effects from CAM (p=0.006).
There was no correlation between different parameters of lifestyle and these statements. Those who rated that they adhered to a healthy nutrition agreed to the statement that in case of unclear health problems, they preferred to combine conventional and complementary therapy (p=0.024). Whereas those admitting to drinking alcohol stated that they prefer scientific methods (p=0.021) less often and that they experienced the positive effects of CAM (p=0.001) or that they were impressed by methods they did not understand (p=0.007) more often. They also preferred CAM in the case of undefined health problems (p=0.042).
Patients who received counseling from a psycho-oncologist more often stated that they had a positive experience with CAM (p=0.013), had been disappointed by conventional medicine (p=0.011) and were convinced that naturopaths have a deeper understanding of their disease (p=0.023).
Discussion
To our knowledge, this is the first report regarding patients with cancer looking for counseling in CAM at a Comprehensive Cancer Center in Europe. From this group, 60% declared using CAM, the rest were interested in the topic but had not used any CAM. This number is higher than that reported in a review of CAM use in German-speaking countries (1). Yet this difference is most probably due to the collective of our study. The fact that only half of patients using CAM declared that afterwards “they felt better” is astonishing but in line with data from another survey performed on patients with cancer (unpublished data of our group). Supplements such as trace elements and vitamins are most often used. In contrast to most other surveys, we found a high relevance for prayer, which is the third most often used method, followed by relaxation techniques.
Attitudes of participants towards conventional medicine and CAM.
A small majority of patients were convinced of stress as being the reason for cancer, which is in contrast to scientific evidence (11) but in line with results from a study on patients with advanced cancer (12). In contrast to our hypothesis, etiological concepts do not correlate with patient behavior regarding CAM. The aims of most patients can be summarized as doing something good for themselves and to being active towards their disease themselves.
These aims are important to consider in the case of counseling a patient with cancer on CAM. Most importantly, accepting a patient's struggle for autonomy offers a chance to increase his cooperation with and adherence to conventional therapy. This aim of patients is a realistic one, as is the goal to strengthen oneself, which may be achievable by using evidence-based complementary treatments as supportive therapy (e.g. ginger against emesis, ginseng against fatigue). On the other hand, a substantial number of patients try to fight cancer directly by using CAM. Two scenarios are possible: complementary use of CAM in order not to omit any opportunity (in this case interactions are the most important point to regard in the course of counseling,) or alternative use, which entails the danger of missing the window of opportunities for conventional treatment and allowing the cancer to grow. In the former case, providing sound information to the patient will most probably help avoid the risks of interaction. In the latter case, it may be hard or even impossible to convince the patient of the benefits for conventional medicine.
As has been shown before in Germany, physicians are often the source of information on CAM (8). This is in contrast to most other Western countries. In spite of pharmacies offering a large variety of biologically-based CAM, pharmacists are rarely consulted. In contrast, physicians should take into consideration print media and try to make themselves acquainted with topics in the most often read books and magazines in order to be aware of the theories promoted in these sources of information. Quite in contrast to health information seeking in the general population (13), patients with cancer still do not use the internet often. Regarding the low quality of information on CAM in the internet (14), this fact should be regarded as an opportunity for the scientific community to prepare adequate websites as the internet most probably will also gain influence on patients with cancer. Health literature should also be a field of research for those trying to obtain information on CAM for cancer patients. Our data point to a possible difference between patients with higher education and those with lower education and the media they prefer.
Regarding the results on patient attitude towards CAM, one must keep in mind that the participants of this survey all attended the counseling unit of CAM. Therefore, these data are not representative of the German population. Yet the rate of patients who would mix conventional therapy and CAM is high (nearly 50%). In accordance with this, a third of these patients did not agree to only relying on methods with scientific background and another third preferred non-medical practitioner or naturopath because they spend more time with them. On the other hand, neither fears of side-effects of conventional cancer treatments nor disappointment in conventional medicine were the main arguments for CAM. Promoting health literacy could be a means of improving critical appraisal of CAM by patients as patients with a high level of education prefer scientific methods (p=0.001).
In order to reduce the risks associated with CAM use and to increase the benefits, an evidence-based approach to the topic is mandatory. Our survey underlines that a two-sided approach could be successful. On the one hand, training of physicians on the topic should be integrated into continuous medical education and combined with training of communication skills and basic knowledge on psycho-oncology. A guideline for counseling patients with cancer on CAM has been proposed by our working group (15). On the other hand, promotion of health literacy, starting in school and continuing into adulthood, by different media (print, TV and radio, as well as the internet) would lay the foundation for patients to critically appraise the broad offers of CAM and to distinguish sound information from esotericism and advertising.
- Received December 8, 2013.
- Revision received December 22, 2013.
- Accepted December 24, 2013.
- Copyright© 2014 International Institute of Anticancer Research (Dr. John G. Delinassios), All rights reserved