Canadian Cancer Society Information Services: Lessons Learned About Complementary Medicine Information Needs Joanna L Eng, Debbie A Monkman, Marja J Verhoef, Darlene L Ramsum and Jennifer Bradbury Abstract The use of complementary and alternative medicine (CAM) in cancer patients is very common. However, currently valid and reliable information on CAM treatments for cancer is limited. The purpose of this study was to identify the information needs of those who called the Canadian Cancer Society's Cancer Information Service (CIS) requesting information on CAM. CIS information specialists completed two-page questionnaires for 109 callers who inquired about CAM therapies. Findings show that the majority of callers were women between the ages of 30 and 59, and that most of their questions concerned the safety and/or effectiveness of herbs and compounds like Essiac and 714X. Information specialists generally utilized one or more of four resources upon receiving a CAM-related call. These resources, while mostly Canadian and reviewed by content experts, are not specific to the type of cancer and are no longer the most up to date. To address this issue we have included an appendix that outlines some current CAM resources and websites for cancer patients. Complementary and Alternative Medicine (CAM) has been defined broadly as “a group of therapeutic or diagnostic disciplines that exist largely outside the institutions where conventional health care is taught and provided”.1 Based on this definition, CAM encompasses a large number of therapies such as acupuncture, herbal treatments, vitamins and minerals, mind-body interventions and faith healing. Cancer patients are some of the most avid users of complementary and alternative therapies. A systematic review of the prevalence of CAM use in cancer in Western developed countries shows that it ranges from 7–64%.2 In a recent Canadian survey of cancer patients Leis et al found that 44% were using CAM.* Although most patients use CAM in addition to conventional cancer treatments, research suggests that there is a small group of patients who forgo conventional treatment in favor of CAM.3 Common reasons for the use of CAM include hoping for a cure or reducing the size of the tumor, ameliorating the side effects of conventional cancer treatment, strengthening the immune system, improving well-being and hope, and taking control of cancer management.4 Cancer patients have made it clear that they want more and better access to information about CAM,5,6 and that they would want their health care professionals to be more interested in, more informed about and more willing to discuss CAM.7 So far, little is known about cancer patients' use of CAM information services. With limited help from the mainstream medical community, patients are researching and exploring CAM therapies on their own. This can be an overwhelming task since this area lacks agreed-upon rules of evidence8 and many CAM approaches for cancer have not been assessed scientifically. The increased interest in alternative cancer treatments has been noted by the Canadian Cancer Society, which offers a cancer information telephone service (CIS) to individuals across Canada. They estimate that approximately 1,300 calls per year, or 2% of their total call volume, are about CAM. The information specialists who answer the calls have a number of resources available to them, but it is not known whether these resources adequately provide callers with the information they require. Recognizing the need for coordinated and quality information services, the Tzu Chi Institute for Complementary and Alternative Medicine and the Canadian Cancer Society–BC and Yukon Division, strategic partners in the provision of information to cancer patients, conducted this study to identify the information needs of those who call the CIS to ask about topics relating to complementary and alternative therapies. This information will assist the CIS in further developing its services and will also be relevant to the many other cancer agencies that provide information on CAM. Ultimately, information on safe and efficacious CAM treatments will improve the well-being of cancer patients. Methods CIS information specialists conducted a small-scale audit of callers' information needs using a structured questionnaire composed of nine multiple-choice and two open-ended questions developed specifically for this study. The open-ended questions addressed the gap between the needs of the callers and the information available. The remaining questions addressed caller demographics, information requests on CAM products and therapies, and the resources provided to the caller. The questionnaire was translated into French so that French-speaking CIS information specialists and callers could also be included in the study. It was necessary to keep the questionnaire as brief as possible, because the CIS information specialists completed the questionnaire immediately after each call. The Canadian Cancer Society's four Cancer Information Service Centres, located in Montreal, Hamilton, Regina and Vancouver, all participated in the study. The directors of each of the four CIS offices reviewed the questionnaire prior to its distribution. The study sample included all callers who made general or specific inquiries to a CIS information specialist at any of the four information centres about complementary or alternative cancer therapies over a four-month period, from June through September of 1999. At the end of this period, all of the completed questionnaires were collected. The questionnaires were first coded and then summary measures were calculated using SPSS version 10.0.9 Content analysis was used to categorize the issues arising in the open-ended questions. Results During the data collection period, 109 CAM-related calls were recorded to the four CIS centres across Canada. Ontario residents were the most frequent callers (40%) followed by residents of Quebec (30%). British Columbians placed third (15%), calling more than residents from Alberta, Manitoba, New Brunswick and the United States combined (13%). In three cases the province where the caller resided was not recorded. Eighty percent of the sample was female. In two instances gender was not identified. Most callers (47%) were between the age range of 30 and 59. Only 12% of respondents were under age 30 and only 21% were age 60 or older. In all other instances the age of the caller was not recorded. Overwhelmingly, questions on CAM were related to cancer treatment (97%) rather than prevention. Most callers inquired about breast cancer (22%) followed by lung (8%) and liver (6%) cancer. In 31% of the calls, the queries were about cancer in general and cancer type was not specified. The remaining calls concerned a variety of cancers including brain, bladder, cervical, colorectal, kidney, ovarian, and melanoma. Most callers (88/109) requested information on specific CAM topics. Fifty-seven different topics were requested, with an average of 1.43 queried per call (s.d. = 0.81). Many callers (25%) asked about more than one (from two to six) topic. The top five CAM topics queried were: 714X (N = 17), Essiac (N = 16), nutrition (N = 9), overall efficacy (N = 8) and Shark's Cartilage (N = 7). Forty-four other CAM topics were queried only once each. CIS information specialists relied on a number of sources when providing callers with information. The top two were: A Patient's Guide to Choosing Unconventional Therapies,10 for 53% of callers and the Canadian Cancer Encyclopedia11 for 46% of callers. One overriding theme was identified when the open-ended questions, in which the information specialists were to make additional comments, were examined. Many information specialists suggested a need for more specific information on CAM treatments for particular cancers, so that the best resources or information could be provided according to cancer type. While the current resources are helpful, the information is very general and not cancer-specific. The information specialists also used this section to report that a number of people called to ask “permission” to use a particular therapy. Discussion Fewer CAM-related calls than expected were made to the CIS centres over the four-month period. In fact, CAM-related calls represented only 0.5 % of all the calls placed to CIS during this period, which is lower than the yearly CAM-call ratio of 1.8%. One possible reason could be that for logistical reasons, the CIS requested that the data be collected over the summer months, which tend to be the lowest call volume months for the centres. This, however, should not affect the ratio of CAM to non-CAM calls if call volume drops in general. It is also possible that questionnaires were not filled out for all the CAM-related calls if the information specialists were too busy. It is impossible to know how many calls were missed, because the information specialists were not asked to keep track of such calls. Although the sample for this study was small, age and gender distributions are consistent with results of other larger studies that have examined CAM use in Canada.20 Consistent with existing findings on CAM information seeking, women placed the majority of CAM-related calls. This may reflect the tendency of women to take a more active role than men in acquiring and reviewing health-related information.21 Although this study was limited by the smaller than expected sample, it still provides valuable information on an area where little research has been conducted. The study was also limited by the fact that the data were collected indirectly, by the information specialists, and not directly from the callers. It is possible that callers' needs are not represented as accurately as possible. The low percentage of callers in BC is surprising and it is not clear how this should be explained. Providing credible information on each of the 57 different types of CAM topics on which information was requested is a very difficult task due to the current lack of a solid evidence base in this field. Indeed, complementary and alternative medicine is still viewed by many as an emerging field, with few agreed-upon rules of evidence. This area of information provision is made even more challenging by the differences in the underlying assumptions between conventional medicine and CAM. While conventional medicine demands a diagnostic and/or physiological approach to research, CAM is based on a very different understanding of health, tending to focus on restoring balance rather than treating symptoms. This has consequences for CAM research, which does not always fit in to the randomized control trial model – the gold standard in conventional medicine research. Without a solid evidence base, providing valid and reliable CAM resources is a challenge. Herbs and compounds were the basis for most of the callers' questions. Essiac and 714X were the most asked about of these and, therefore, should potentially be the first area examined when looking at what information to provide to callers. While there has been some research done on these compounds, the studies are not cancer-specific and not conclusive in their findings. Information specialists frequently relied on A Patient's Guide to Unconventional Therapies10 and the Canadian Cancer Encyclopedia11 to answer questions. These resources, however, are somewhat inadequate due to their inability to specifically address the vast array of CAM-related questions being asked. For example, some information specialists expressed frustration over not being able to give CAM information specific to cancer type. This is not surprising given that most CAM resources have been found to be treatment-focused rather than diagnosis-specific. Results showed that the CIS Selected List of CAT's Websites19 was referred to far less than the other available resources. This could be an indication that many callers still do not have access to the Internet or may be unaware that CIS has a website. Since useful CAM information is available online, callers could be encouraged to access the Internet, perhaps through courses at their public library. This may not be a viable solution for everyone, as some may not be physically well enough or familiar enough with computers to do so. The reliance on the materials listed in Table 2 is consistent with internal CIS policies. The CIS approves third-party materials for distribution by reviewing the organizations that publish the materials, and the materials' scientific accuracy and relevance to CIS callers. During a call, information specialists are asked to refer to “approved” CAM references, which are listed in the database and would come up in a search with CAM as the topic. The sources used by the information specialists are consistent with those in the database. Most callers wanted specific suggestions and advice or “permission” to use a therapy. Since as many as one half of cancer patients do not disclose their use of CAM therapies to their physicians,22–25 it stands to reason that they would seek permission and reassurance to use these therapies elsewhere. However, this is in conflict with the CIS mandate, which requires that only information, not advice, opinions or permission, be provided to callers. This policy, though necessary, contributes to the frustration of callers trying to obtain information on CAM. This study highlights the fact that both the information specialists and the callers need new and better resources to deal with questions about CAM. Although CIS resources were found to be insufficient to address all of the CAM issues, this is not surprising in light of the fact that the increase in CAM in Canada is a relatively new phenomenon. To illustrate the range of resources available and to aid organizations like CIS in selecting resources that are up to date and in line with their mandate, we have included an appendix of CAM resources (see Appendix). This appendix is intended for use by practitioners and health information providers. It should be noted that this list is not comprehensive, nor is it intended to take the place of the current CIS resources, which continue to be useful and have been carefully reviewed by content experts. It is meant to complement those resources already in use and as a further step in assisting cancer patients with their disease management decisions. Canadian Cancer Society Information Services on CAM, 1/02 Canadian Cancer Society Information Services Remember we are NOT Doctors and have NO medical training. This site is like an Encylopedia - there are many pages, many links on many topics. Support our work with any size DONATION - see left side of any page - for how to donate. 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