If you don't remember your password, you can reset it by entering your email address and clicking the Reset Password button. You will then receive an email that contains a secure link for resetting your password
If the address matches a valid account an email will be sent to __email__ with instructions for resetting your password
Department for Hematology and Oncology, University Clinic Freiburg, Freiburg, GermanyDepartment of Environmental Health Sciences, University Clinic Freiburg, Hugstetter Str. 55, D-79106 Freiburg, Germany
Complementary and Alternative Medicine (CAM) refers to various treatments not considered as part of conventional care. CAM is used by a high number of breast cancer patients.
This is a cross-sectional study employing a validated questionnaire with the aim of studying CAM use and of exploring the needs of information and communication in female breast cancer patients.
Experiences associated with discussing CAM within a conventional oncology setting were examined. Answers of patients not using CAM were also elicited.
Predictors for CAM use were a higher degree of education and being of a younger age. The study demonstrated that patients were reluctant to initiate communication within standard oncology care. They rather relied on family and friends (49%), on the general practitioner (40%) or media sources (39%) for information. Reasons for not talking about CAM were not having been asked (25%) or not having perceived the inpatient physician to be the adequate person to talk to (11%). Reasons for not using CAM were mainly considering conventional therapy as sufficient (34%) and not having thought about CAM (31%).
Particularly within conventional oncological care it is important to train physicians to have knowledge of supportive CAM options as this is what patients look for, but restrain from seeking within the speciality system.
According to the US National Center for Complementary and Alternative Medicine, Complementary and Alternative Medicine (CAM) refers to ‘a group of diverse medical and healthcare systems, practices and products that are not generally considered part of conventional medicine
’. CAM therapies and products can either be used simultaneously with conventional medicine (thus complementary), or instead of standard procedures (alternatively). Cancer patients mostly use CAM in a complementary manner, e.g. wishing to contribute to their overall general health and well-being
, and dissatisfaction with conventional treatment is only a minor reason for CAM use compared to the more active approaches associated with the wish to contribute to one’s own health.
Data on the prevalence of CAM underscores the importance for patients and shows that the use of CAM therapies is particularly widespread among female breast cancer patients, with a recent European survey showing that CAM is used by an average of 40% of cancer patients and about 45% of breast cancer patients.
In Germany, studies report higher rates of CAM use, e.g. reaching 60% among patients suffering from different cancer entities and even 70% in the group of breast cancer patients in a rehabilitation setting.
Coping strategies and the request for a consultation on complementary and alternative medicine- a cross-sectional survey of patients in a psychosomatic and three medical departments of a German university hospital.
Use of complementary and alternative medicine by cancer patients is not associated with perceived distress or poor compliance with standard treatment but with active coping behavior.
Komplementaere Massnahmen bei Patientinnen mit gynaekologischen Malignomen unter Chemo- und Hormontherapie - Bestandsaufnahme und kritische Überlegungen für die Praxis (Complementary measures used by patients with gynecologic cancers undergoing cytotoxic or hormonal chemotherapy).
As compared to breast cancer patients who do not use CAM, patients using CAM are mostly younger, better educated and adopt a more active coping style, but also seem to be more distressed and impaired in quality of life.
Use of complementary and alternative medicine by cancer patients is not associated with perceived distress or poor compliance with standard treatment but with active coping behavior.
Prevalence, socio-demographic and clinical predictors of post-diagnostic utilisation of different types of complementary and alternative medicine (CAM) in a nationwide cohort of Danish women treated for primary breast cancer.
Role of complementary and alternative medicine in the care of patients with breast cancer: report of the European Society of Mastology (EUSOMA) Workshop, Florence, Italy, December 2004.
The role of complementary and alternative medicine in the management of early breast cancer: recommendations of the European Society of Mastology (EUSOMA).
Little is known about breast cancer patients’ experiences when seeking information about CAM either from inside or outside the medical system. The most important sources of information for patients seem to be family and friends, media including the internet and health care providers including nurses and general practitioners (GPs) or non-medical providers.
Interactions between breast cancer patients and their oncologists showed that communication concerning CAM was mostly patient-initiated and met with encouragement in 38% of cases, while 23% of the references to CAM were answered discouragingly and 20% were ignored.
In this paper we present results on CAM use versus non-use by female breast cancer patients across all disease trajectories and particularly explore information and communication needs as well as experiences associated with discussing CAM within a conventional oncology setting, including gynaecological oncology and radiotherapy.
2. Patients and methods
2.1 The study
This is a cross-sectional study of female breast cancer patients of all stages of disease who responded to a validated self-administered questionnaire. The aim of the study was to collect data on CAM use and on quality of life, to explore the needs of patients with regard to communication and information about CAM treatment and to explore experiences with communication about CAM issues.
2.2 Sample
We recruited patients from the following four settings in order to include breast cancer patients across all stages of disease: (1) gynaecology outpatient unit and (2) radiotherapy outpatient unit, both at the University Hospital Freiburg/Breisgau, Germany, (3) unit for internal oncology and (4) rehabilitation inpatient unit of an oncology clinic (Klinik für Tumorbiologie Freiburg/Breisgau, Germany). The radiotherapy unit covers acute radiological treatment as well as follow-up care up to 10 years and more following treatment, but in this study only patients who came for follow-up visits were approached. In the gynaecology outpatient department, both newly diagnosed patients e.g. receiving neoadjuvant chemotherapy and patients with a longer history of breast cancer are treated, while the rehabilitation patients had mostly just completed an acute treatment and those in the unit for internal oncology were often in a palliative situation with a longer history of breast cancer. Recruitment was carried out by a medical student (E.T.), who consecutively asked patients in the respective units during a 3 month-period to fill out the questionnaire. The study was approved by the local ethics committee of the University of Freiburg.
A total response rate of 81% was achieved. A sample of 12 non-responders gave their consent for the extraction of data from their medical charts and some gave reasons for not answering the questionnaire. These patients were on average 14 years older than responders. The reasons for not completing the questionnaire ranged from having forgotten their glasses to feeling too ill. A recruitment flowchart is depicted in Fig. 1.
Fig. 1Recruitment flowchart. RTH – Department for Radiotherapy, GYN – Department for Gynaecology, ONC – Department for Oncology, OncR – Department for Oncological Rehabilitation.
We developed a questionnaire comprising questions about CAM use, information sources, communication experiences and needs, and also took care to ask pertinent questions of patients who were not CAM users (e.g. ‘For what reasons did you abstain from CAM use?’). The questionnaire also contained the standardised The European Organisation for Research and Treatment of Cancer QLQ-C30 (EORTC-QLQ-C30) quality of life instrument including a special breast cancer module.
The European Organization for Research and Treatment of Cancer QLQ-C30: a quality of life instrument for use in international clinical trials in oncology.
The questionnaire consisted of 30 items regarding the use of CAM and information on demographic features plus the EORTC-QLQ-C30 instrument. It contained a mixture of tick off-boxes and open-ended questions and took about 30 min to complete. In order to achieve valid answers, we listed different types of CAM which proved to be relevant according to other studies. We also left space for adding further therapies not mentioned in our questionnaire. The development of the questionnaire involved several steps ranging from a literature review and obtaining expert advice to formal validation steps such as pre-testing and cognitive interviewing (an interview technique examining the understanding of questionnaires; data of the interviews not shown here) in accordance with published manuals.
Additionally, crucial medical information such as the histopathological findings was extracted from medical records ensuring a valid diagnosis of breast cancer.
2.4 Statistical analysis
We report descriptive analyses of CAM use, CAM information, treatment and the search for consultation on CAM. To compare the group of CAM users with that of non-CAM users, t-tests and Chi2 analysis were carried out, depending on the continuous or nominal nature of the data. Some results are given only for the 107 patients who used CAM (‘CAM users’).
3. Results
3.1 Sample characteristics
Of a total of 211 patients approached, 170 (81%) participated in the study. Of the 41 patients not completing the questionnaire, 12 gave permission to extract data from their medical records. The mean age of these patients was 72 years, which is significantly different compared to the patients participating in the study (mean age 58 years). For details of the sample, please see Table 1 Reasons given for not participating were e.g. being in pain or feeling unwell. Due to the small number of patients, no further comparative analyses were carried out.
Compared to patients who did not use CAM (non-users), CAM users were on average 5 years younger and had more often received a higher education. In the group of CAM users, more patients had positive lymph nodes or metastases at the time of the initial diagnosis (p = 0.015 and p = 0.032, resp.) and underwent chemotherapy or mastectomy (p = 0.029 and p = 0.001, resp.). Patients in advanced stages (recurrence, metastatic disease or patients with a further diagnosis of cancer) used CAM more often (80% versus 52%, p < 0.001).
Although CAM users and non-users did not differ significantly regarding the global health status scale of the EORTC QLQ-C30, the group of CAM users appeared to have a lower quality of life on some subscales as emotional, cognitive and social functioning and suffered more from side-effects of systemic therapies (data not shown in detail).
The 107 CAM users were asked about CAM use since the diagnosis of breast cancer. As described above, we listed different CAM therapies neutrally in order to achieve valid answers on CAM use without differentiating between potentially helpful therapies such as relaxation techniques or therapies as ingestion of high doses of antioxidants or soya with a potentially negative impact. The highest percentages were given for the use of vitamins/minerals (66%), mistletoe therapy (51%), yoga/relaxation techniques (43%), herbal medicine (33%), physical therapies (33%), homoeopathy (29%), manual manipulation (14%) and acupuncture (10%). Besides CAM use itself, we also asked about reasons for use. The most prominent reasons were: general health promotion (70%), enhancement of self-healing powers (57%), boosting the immune system (55%), actively contributing to one’s own health (54%), complementing conventional therapies (54%) and fighting energy loss and fatigue (51%).
3.3 Reasons for not using CAM
Patients who explicitly stated that they had not used CAM were asked why they had not done so. The reasons mostly given were: ‘I think standard therapy is sufficient’ (34%), ‘I haven’t thought about it’ (31%), ‘I have not yet had any time to think about CAM’ (28%), ‘I couldn’t find any reliable information’ (26%) and ‘My physician advised against it’ (13%).
3.4 Information and treatment seeking behaviour
We asked about the information sources CAM users looked for when interested in CAM and what kind of practitioners provided them with CAM treatment. The most prominent sources of information were outside the medical system, i.e. families and friends in 49%, followed by the media (39%), whereas within the medical system, the GP played the major role (40%), followed by the outpatient gynaecologist with 20%. Practitioners within the oncology specialty system (inpatient attending physician with 14% and outpatient oncologist with 11%) ranked below other patients (17%) and non-medical practitioners (16%) as information sources.
Similarly, 35% mentioned GPs as the practitioners they most frequently consulted for CAM treatment, followed by physicians specialised in naturopathy (32%; in Germany, most often GPs) and by non-medical practitioners (24%). Breast cancer specialists such as oncologists or gynaecologists were only named by 7% and 9%, respectively. Breast cancer specialists also ranked below GPs when patients were asked from whom they would seek CAM consultation and counselling, with the oncologist being the specialist least associated with CAM (45% GP, 36% gynaecologist, 17% oncologist; item: ‘Who would you address when having questions about CAM?’). In contrast to these findings, when CAM users were asked if they would like to get information about CAM within the specialty clinic 93% agreed and 89% would prefer having CAM treatment within the oncology system.
3.5 Communication
CAM users who did not talk to their attending doctors in the inpatient setting were asked to give reasons for not mentioning CAM. The major reason (given by 25%) was simply not having been asked about CAM, followed by reasons such as ‘the inpatient setting is not the right setting to talk about CAM’ (11%) or ‘I don’t believe the inpatient specialist approves CAM’ (8%). Perceived differences in inpatient and outpatient settings were also evident when CAM users were asked about the most supportive and most discouraging reactions to CAM they had experienced. This item was given as a free text where respondents could name persons with whom experiences were either supportive or discouraging. Altogether 264 instances or reactions were named, both within and outside the medical system (e.g. friends), with 203 (77%) interactions experienced as supportive and 61 (23%) as dispiriting. About 23% of the supportive reactions referred to the GP, whereas the most prominent negative interactions were associated with inpatient doctors (about 41% of negative accounts). All in all, GPs, families and friends as well as medical and non-medical CAM specialists and the outpatient gynaecologist were reported as generally being supportive, compared to oncology specialists (inpatient physician, outpatient oncologist) who were rather associated with negative accounts.
4. Discussion
In this cross-sectional survey breast cancer patients from different speciality units and thus over all different trajectories of the disease were investigated. Study participants were sampled from different in- and outpatient settings by a personal approach on a consecutive basis. This resulted in a response rate of 81% and a fairly high sample size. However, non-responders were older and probably more impaired as a result of the disease, as reasons for not wanting to complete the questionnaire were e.g. being in pain or feeling generally unwell. The questionnaire was developed by the study group after carefully reviewing similar studies. We took great care to ensure validity by employing several pretesting methods including cognitive interviews.
Breast cancer patients are the group of cancer patients most frequently using CAM worldwide
We found that the majority of patients had used CAM since their breast cancer diagnosis (63% versus 37%). There were significant differences between these groups, with CAM users being younger and better educated. This corresponded with other research on CAM use in cancer patients
We found that in the group of CAM users, more patients had positive lymph nodes or metastases at the time of the initial diagnosis. There were more patients with a history of mastectomy or chemotherapy or who had a recurrence. This points to the fact that patients in advanced stages might search for further treatment options beyond conventional medicine. An association between CAM use and advanced disease was confirmed in several other studies.
Use of complementary and alternative medicine by cancer patients is not associated with perceived distress or poor compliance with standard treatment but with active coping behavior.
This corresponded with the fact that in some scales of the EORTC QLQ-C30 such as emotional and social functioning and suffering from side-effects of systemic therapy, the group of CAM users had lower quality of life scores. Other studies also found CAM users to be significantly more impaired regarding their quality of life.
Complementary and alternative medicine practitioner consultations among those who have or have had cancer in a Norwegian total population (Nord-Trondelag Health Study): prevalence, socio-demographics and health perceptions.
Use of complementary and alternative medicine by cancer patients is not associated with perceived distress or poor compliance with standard treatment but with active coping behavior.
Komplementaere Massnahmen bei Patientinnen mit gynaekologischen Malignomen unter Chemo- und Hormontherapie - Bestandsaufnahme und kritische Überlegungen für die Praxis (Complementary measures used by patients with gynecologic cancers undergoing cytotoxic or hormonal chemotherapy).
, as in our study mistletoe therapy, vitamins and micronutrients were used by more than half of CAM users, followed by relaxation techniques and well-known CAM therapies in Germany (herbal medicine and homoeopathy). The most prominent reasons given for CAM use were rather general statements referring to coping strategies and to support the fight against cancer or accompanying symptoms.
These findings are very much in line with other studies.
However, asking breast cancer patients for reasons not to have used CAM was unique to this study. Possible reasons were given as a list of statements that were collected throughout the pretesting phase and expressed by means of a range of statements from not having thought about CAM therapies to not believing in CAM, or believing it might be harmful. Indeed, not having thought about CAM (either not at all or due to time restraints) proved to be the true case for about one third of patients, along with the feeling that conventional therapies were sufficient.
Regarding information sources and supportive experiences when discussing CAM, families and friends as well as GPs played a major role. In comparison, patients did not see their oncological specialists as experts regarding information about CAM and sometimes anticipated them to disapprove of CAM, a fact that might prevent them from initiating communication about CAM. At the same time, the clear majority of patients wished to get information on CAM as well as CAM treatment within the oncological speciality system. Thus, non-medical information sources such as media including the internet, family and friends as well as non-medical practitioners should be considered when communication on CAM is attempted by oncologists. Additionally, in this study as well as in other studies, the GP proved to be an essential point of contact concerning CAM.
Komplementaere Massnahmen bei Patientinnen mit gynaekologischen Malignomen unter Chemo- und Hormontherapie - Bestandsaufnahme und kritische Überlegungen für die Praxis (Complementary measures used by patients with gynecologic cancers undergoing cytotoxic or hormonal chemotherapy).
Our findings underscore the results obtained in other studies, such as high overall use of CAM in breast cancer patients and the association of CAM use with younger age, higher education and more advanced clinical stages. This study clearly demonstrates the role of information sources outside the medical system, sometimes reinforced by negative experiences within the oncology speciality system. Given the prevalence of CAM use and the restraints patients felt, every attempt should be made by oncologists to initiate communication about CAM pro-actively (including the provision of information regarding possible supportive options and cautioning about the potential harm of some of these therapies), rather than letting breast cancer patients slip into an alternative world seemingly detached from conventional medicine, where patients rely mainly on the advice given by other patients, family members and friends or on information extracted from the internet.
Conflict of interest statement
None declared.
Acknowledgement
This work was supported by a medical dissertation grant by the Karl und Veronika Carstens Foundation.
References
National Center for Complementary and Alternative Medicine. What is CAM?. <URL:http://www.nccam.nih.gov/health/whatiscam>; 2010.
Coping strategies and the request for a consultation on complementary and alternative medicine- a cross-sectional survey of patients in a psychosomatic and three medical departments of a German university hospital.
Use of complementary and alternative medicine by cancer patients is not associated with perceived distress or poor compliance with standard treatment but with active coping behavior.
Komplementaere Massnahmen bei Patientinnen mit gynaekologischen Malignomen unter Chemo- und Hormontherapie - Bestandsaufnahme und kritische Überlegungen für die Praxis (Complementary measures used by patients with gynecologic cancers undergoing cytotoxic or hormonal chemotherapy).
Prevalence, socio-demographic and clinical predictors of post-diagnostic utilisation of different types of complementary and alternative medicine (CAM) in a nationwide cohort of Danish women treated for primary breast cancer.
Role of complementary and alternative medicine in the care of patients with breast cancer: report of the European Society of Mastology (EUSOMA) Workshop, Florence, Italy, December 2004.
The role of complementary and alternative medicine in the management of early breast cancer: recommendations of the European Society of Mastology (EUSOMA).
The European Organization for Research and Treatment of Cancer QLQ-C30: a quality of life instrument for use in international clinical trials in oncology.
Complementary and alternative medicine practitioner consultations among those who have or have had cancer in a Norwegian total population (Nord-Trondelag Health Study): prevalence, socio-demographics and health perceptions.
00372-3&id=gr1.jpg){kind=link}