|
Advertisement |
|
|
||
 |
|
|||||
|
|||||
|
 |
||||||
|
||||||
|
||||||
|
© 2000 American Society for Clinical Oncology Use of Complementary/Alternative Medicine by Breast Cancer Survivors in Ontario: Prevalence and PerceptionsFrom the Centre for Studies in Family Medicine, Faculty of Medicine and Dentistry, University of Western Ontario; London Regional Cancer Centre, London; and Sunnybrook Health Sciences Centre, Toronto, Ontario, Canada. Address reprint requests to Heather Boon, PhD, Department of Health Administration, University of Toronto, 790 Bay St, Suite 1100, Toronto, Ontario, Canada M5G 1N8; email heather.boon{at}utoronto.ca
PURPOSE: To determine the prevalence of use of complementary/alternative medicine (CAM) by breast cancer survivors in Ontario, Canada, and to compare the characteristics of CAM users and CAM nonusers. PATIENTS AND METHODS: A questionnaire was mailed to a random sample of Ontario women diagnosed with breast cancer in 1994 or 1995. RESULTS: The response rate was 76.3%. Overall, 66.7% of the respondents reported using CAM, most often in an attempt to boost the immune system. CAM practitioners (most commonly chiropractors, herbalists, acupuncturists, traditional Chinese medicine practitioners, and/or naturopathic practitioners) were visited by 39.4% of the respondents. In addition, 62.0% reported use of CAM products (most frequently vitamins/minerals, herbal medicines, green tea, special foods, and essiac). Almost one half of the respondents informed their physicians of their use of CAM. Multiple logistic regression analysis determined that support group attendance was the only factor significantly associated with CAM use. CONCLUSION: CAM use is common among Canadian breast cancer survivors, many of whom are discussing CAM therapy options with their physicians. Knowledge of CAM therapies is necessary for physicians and other health care practitioners to help patients make informed choices. CAM use may play a role in the positive benefits associated with support group attendance.
THE MEDICAL literature documents the current popularity of natural alternatives to conventional medical treatments,1,2 especially among patients with chronic life-threatening diseases such as cancer.3-7 Complementary/alternative medicine (CAM) has been defined by Eisenberg et al8 as medical interventions that are not taught widely in medical schools or generally available in hospitals. Despite the fact that CAM is used by an increasing number of North Americans, there is often little information regarding which services are being accessed, which sources of information are being used, what the costs to the patient are, or what the patients’ perceptions are of their conventional practitioners compared with that of the CAM practitioners they visit. Although there is ample evidence that a significant proportion of breast cancer patients use CAM, the use of specific anticancer products (ie, shark cartilage, essiac, and iscador) has never been studied. Understanding the prevalence of use of specific products and therapies is essential to inform future research priorities, to design useful information sources for patients, and to improve the overall management of patient care. This research provides a comprehensive assessment of the prevalence of use of CAM by breast cancer survivors. The primary objective of this study was to determine the prevalence of use of CAM in a random sample of breast cancer survivors in Ontario, Canada. The second objective was to identify ways in which users and nonusers of CAM differed. It was hypothesized that CAM users would be younger and better educated, have higher family incomes, express a desire for more control over treatment decisions, and rate their conventional practitioners lower than would CAM nonusers.
Sample A random sample of 1,221 women 18 years or older and diagnosed with breast cancer in 1994 or 1995 was selected (via pathology reports) from the Ontario Cancer Registry. The Ontario Cancer Registry is a computerized database of information on all Ontario residents who have been newly diagnosed with cancer or who have died from cancer. Thus, we were able to select a sample from a database that represents all women in Ontario diagnosed with breast cancer before 1996 (the last year for which data was complete at the time of sampling). Permission to contact each woman was requested from her family physician or oncologist as stipulated by the Ontario Cancer Registry’s research protocols. Sixty-four (5%) of the 1,221 women sampled had died; permission to contact was denied by the physicians of 127 (10%) of the women originally sampled (for a variety of reasons, including the patient’s inability to speak English and emotional instability); the current physician was unknown for 84 women (7%), and there was no response from physicians to our initial request or subsequent follow-up attempts (up to three telephone calls) for 350 (29%) of the women originally sampled. Permission was given to contact 596 (49%) of the original sample (1,221) by the physicians; however, mailing addresses were obtained for only 557 of these women before the mailing of the survey (Fig 1).
A 22-item questionnaire and cover letter that invited participation and requested return of the survey as indication of intent to participate were mailed to all of the women we received permission to contact (n = 557). Subjects were assured that refusal to participate in the study would not affect their future care in any way. Failure to respond to two additional follow-up letters constituted refusal to participate. Sample size calculations (total population, 12,000 cases; estimated prevalence, 30%) suggested that the study needed to obtain 327 responses to be able to estimate the prevalence of use of CAM with a 5% error of estimation.9,10 All questionnaires were numerically coded to ensure the confidentiality of responses. Before the questionnaire was constructed, six focus groups (n = 36) were held to explore how women who had been diagnosed with breast cancer perceived CAM. The results from the focus groups were combined with validated and reliable measures from the literature to build the questionnaire. Items developed and validated by Yates et al4 for use with breast cancer patients were selected to assess the primary variable, which was the prevalence of use of CAM therapies. These two groups of items specifically assessed patients’ visits to CAM practitioners and use of CAM products. Based on the focus groups with breast cancer patients,11 specific CAM cancer therapies (bovine cartilage; essiac, an herbal mixture prepared as a tea; green tea; hydrazine sulphate; iscador, an herbal preparation made from European mistletoe; ozone therapy, an injectable therapy; shark cartilage; taheebo tea; and 714-X, a camphor compound that has been combined chemically with ammonium salts, sodium chloride, ethanol, and nitrogen) were added to Yates’ original question about CAM therapy use. Other variables included the following: (1) reasons for using CAM (developed from focus group data)11; (2) barriers to the use of CAM (developed from focus group data)11; (3) disclosure of the use of CAM to physicians; (4) decision-making preferences (a single question developed and validated by Strull et al12); (5) ratings of relationships with both CAM practitioners and conventional medical practitioners (developed and validated by Yates et al4); (8) ratings of attitudes about both CAM and conventional medical treatments for breast cancer (developed and validated by Yates et al4); and (9) demographic information. The questionnaire was reviewed by the members of the research team for content validity and was pilot tested with the breast cancer survivors who were part of the research team. The questionnaire and the data collection protocol received ethical approval from the University of Western Ontario’s Review Board for Health Sciences Research Involving Human Subjects.
Analysis
Of the 557 questionnaires mailed, 422 (75.8%) were returned complete and 39 (7.0%) were undeliverable. Seven of the respondents (1.3%) were reported to have died and were therefore not counted in the denominator. Eleven women (2%) who responded indicated that their first diagnosis of cancer was before 1994, which meant that they did not meet our inclusion criteria of first diagnosis of cancer in 1994 or 1995; thus, their responses were removed because of ineligibility. Overall, the final response rate of completed questionnaires divided by eligible respondents was 76.3% (411 of 539). The average age of the respondents was 58.0 years. They were diagnosed with breast cancer for the first time an average of 34. 9 months before responding to the survey. Most (95.8%) reported that they had had surgery to treat their breast cancer. In addition, 64.1% reported having radiotherapy, 37.1% reported receiving chemotherapy, and 27.8% reported receiving hormone therapy for their breast cancer. The majority (71.6%) were married, and 15.0% were widows. More than one half (51.6%) of the respondents identified their ethnic and cultural group as North American, whereas 30.4% identified themselves as European. The remainder of the respondents (18.1%) belonged to a wide range of ethnic and cultural groups. Just fewer than one half of the respondents had completed more than a high school education (49.2%) and had a household income in 1997 of 40,000 Canadian dollars (Can $) or greater (49.7%).
Use of CAM
Chiropractors were the CAM practitioners visited most often, with almost one third of the survey respondents reporting that they had visited a chiropractor at least once in their lives. Other practitioners visited by the survey respondents included the following (in descending order of frequency of visits): herbalists, acupuncturists or traditional Chinese practitioners, naturopathic practitioners, and reflexologists (Table 1). The 36 women (8.8% of the respondents) who reported spending money to visit CAM practitioners in the month before receiving the survey spent an average of Can $84.14 (minimum, Can $8.00; maximum, Can $400.00). Vitamins and minerals were the CAM therapy most commonly used by the respondents, with approximately one half of these women reporting use of vitamins or minerals at some time in the past. Vitamins and minerals were the only CAM therapy used by 55 respondents (13.4%). Other commonly used therapies included the following (in descending order of frequency of use): herbal remedies, green tea, special foods or diets, essiac, body work (including Reiki, massage, and therapeutic touch), and meditation (Table 2.) The 150 women (36.5% of the respondents) who reported spending money on CAM products in the month before receiving the survey spent an average of Can $69.77 (minimum, Can $4.00; maximum, Can $900.00). The most common reason cited by CAM users for using these products and therapies was to boost the immune system (63%). Other reasons for using CAM included the following: to increase quality of life (53%), prevent a recurrence of cancer (42.5%), provide a feeling of control over life (37.9%), aid conventional medical treatment (37.9%), treat breast cancer (27.9%), treat side effects of conventional treatments (21.0%), attempt to stabilize current condition (17.4%), and compensate for failed conventional medical treatments (5.0%). One half of the CAM users (50.6%) reported that they first learned about CAM from a friend or family member. Of importance is that 127 (46.4%) of the women who reported using some form of CAM also reported that some or all of their physicians knew that they were taking CAM. More than one third of the CAM users (35.8%) claimed that all their physicians knew of their CAM use, whereas 8.4% reported telling only their family physicians and 2.2% acknowledged telling only their specialists.
Barriers to CAM Use
Attitudes About Conventional Care
*Significant difference.
Attitudes of CAM Users About CAM Care In contrast, CAM users’ overall attitude (based on ratings from 15 items) toward CAM therapies did differ from their overall attitude toward conventional breast cancer treatments (P < .001) (Table 4). Specifically, CAM users believed that conventional cancer treatments were more likely than were CAM treatments to cure the cancer, prevent the spread of cancer, have side effects, weaken the body’s natural reserves, prevent a recurrence of the cancer, and increase their quality of life. On the other hand, CAM users believed that CAM treatments were better at assisting the body’s natural forces to heal, provided more of a boost to the immune system, and were safer than conventional treatments. It was not possible to determine if the beliefs of CAM users and CAM nonusers with respect to CAM therapies differed significantly, because approximately one half of the nonusers did not respond to this question. {tabft}NOTE. P values are from t tests performed on the mean score for each item. These are not presented in the Table. Participants responded to two sets of identical questions that asked about their perceptions of standard medical therapies and CAM.
*Significant difference.
Characteristics Associated With Use of CAM
There was a significant difference between the decision-making preferences of CAM users and those of CAM nonusers (Table 5). More than one third of each group, 44.5% of CAM users (122 of 274) and 38.7% of CAM nonusers (53 of 137), stated that the ideal situation for them would be that in which "the doctor and I make the decisions together on an equal basis." A greater number of CAM users wanted to make the decision themselves but would consider varying degrees of physician input. Nonusers of CAM were more likely to prefer that the doctor make the decision with varying degrees of patient input. Seven items were entered into the logistic regression analysis: decision-making preferences, agreement with the statement that "standard treatments will cure the cancer," agreement with the statement that "standard treatments will prevent the spread of cancer," whether the respondent had chemotherapy treatment for her cancer, whether the respondent had attended a support group, age, and education (Table 6). The results of the logistic regression indicated that attending a support group was the only item significantly related to use or nonuse of CAM after controlling for all other variables. {tabft}*Statistically significant: P < .05.
The finding that, overall, 66.7% of the Canadian breast cancer survivors who responded to the survey reported using CAM therapies and products in the past is higher than has been found among breast cancer patients in other studies.4-7,13,14 Despite the differences in instruments and samples, this seems to indicate an increasing prevalence of CAM use over time. Surveys of this type can be helpful in assessing regional research priorities. The relatively common use of specific anticancer CAM products such as green tea and essiac, which have never been adequately studied in clinical trials, suggests that more research into these products should become a priority for Ontario researchers. Previous research findings indicate that only approximately 30% of individuals who use CAM informed their physicians of this choice.1,15 The findings indicate that almost one half of CAM users (46.4%) who responded to the survey reported that their physicians knew about their use of CAM. We hypothesize that this may indicate a change in the level of acceptability of CAM use, both among the population surveyed and among members of the medical profession. Yet, Eisenberg et al1 recently found no change in the percentage of Americans who informed their physicians of their CAM use from 1990 to 1997. Another explanation is that breast cancer patients are more likely to discuss their use of CAM with their physicians than are the general public. In addition, the results may reflect the recent interest in and encouragement of enhanced relationship-building and communication between Ontario physicians and their breast cancer patients.16 The results confirm the findings of earlier studies that showed that use of CAM is correlated with higher incomes,4,5,7 younger patients,4,7,17 and better education.5,6,17 However, none of these characteristics were significant in the multiple logistic regression analysis. According to the data, when all the key variables were assessed together, the only characteristic that seemed to be significantly related to use or nonuse of CAM was attending a breast cancer support group. Two other studies have identified "belief in ‘alternative’ causes of cancer,"4 "desire for control over treatment decisions,"4 "will to live,"4 "fear of recurrence,"14 "depression,"14 "worse summary scores for mental health,"14 and "greater number of symptoms"14 as the most important factors associated with use of CAM. Neither study included support group attendance in their analyses. In fact, one study14 identified self-help groups as a type of CAM. Our regression analysis included "desire for control over treatment decisions" but did not find a significant association with CAM use once the other factors, including support group attendance, were taken into account. There are two processes that could explain the findings: (1) selection (ie, a specific type of person attends support groups and chooses to use CAM) and (2) support group dynamics (ie, something that occurs in the support group influences individuals to be more likely to use CAM). We hypothesize that both processes are important. Approximately one quarter (23.4%) of the total sample reported attendance at a support group at least once. The data indicate that women who attended support groups are more likely to be younger and to have more education and higher incomes than those who do not attend support groups. This constellation of demographic variables has also been consistently linked with use of CAM. In addition, the women in the sample who attended support groups were more likely to have had chemotherapy and to believe less strongly that standard medical treatments would prevent the spread of the cancer. This supports the argument that underlying demographic characteristics and, perhaps, personality and disease characteristics explain both support group attendance and CAM use. For example, psychosocial problems may prompt patients to seek both support groups and CAM. There is also evidence in the literature that the support group itself may have an effect on individuals’ use of CAM. Support groups have been recognized as supportive environments that empower women to become more active in their treatment decisions. Support groups would seem to be ideal environments for sharing information about CAM experiences. Overall, support groups are associated with positive outcomes such as increased quality of life18, 20 and potentially increased survival.21 This study suggests that use of CAM may be part of this positive support group experience. Clearly, more research is needed to explore these explanations in further detail. Despite the fact that we originally selected a truly random sample from the Ontario Cancer Registry, which includes the pathology reports from virtually all women diagnosed with breast cancer in Ontario during 1994 and 1995, we were only able to mail surveys to approximately one half of the random sample (Fig 1). We were denied permission to contact women who were identified by their physicians as too ill or emotionally unstable to respond or unable to speak English (fewer than 10% of the original sample). The reason we were unable to contact most of the other women was an inability to obtain permission from their physicians (approximately 40%). There is no reason to believe that the women lost to follow-up for this reason were any different from the women who were surveyed. It is hypothesized that those who were ill or non–English speaking would have been unlikely to have attended support groups, which would have resulted in a slightly more heterogeneous non–support group category, but that this is unlikely to have affected the overall findings of the study.
Implications for Breast Cancer Survivors and Their Caregivers Health care professionals, including physicians, nurses, pharmacists, dietitians, social workers, and psychologists, have an important role to play in providing objective information to breast cancer patients that will help them make informed choices about CAM therapy options. Patients often learn about CAM products and therapies from companies who make a profit by selling them. Despite the fact that many CAM products and therapies seem to be quite safe, it is important that patients have realistic expectations about potential benefits. In addition, potential adverse effects and interactions with other medications (if known) need to be discussed. Sometimes, providing objective information means ensuring that patients understand that there is little or no scientific information about the safety and efficacy of a particular product. To facilitate patient-practitioner discussions, databases and other sources of accurate information about CAM products and therapies are essential. Because it is clear that women diagnosed with breast cancer use CAM frequently, it is time that discussion of CAM options become a routine part of conventional care. CAM users perceive that CAM practitioners are better listeners and provide more emotional support than conventional practitioners, which indicates that the relationship that develops between patients and CAM practitioners may be a key to understanding the appeal of CAM. Further research that investigates the psychosocial support provided by CAM practitioners is clearly necessary to facilitate better understanding of the reasons for CAM use. In conclusion, CAM is currently used by two thirds of the women in Ontario, Canada, who are diagnosed with breast cancer, almost one half of whom have informed their physicians of their CAM use. Use of CAM is associated with support group attendance and may play a role in the positive effects of support groups reported in the literature. It will be important for future assessments of the potential benefits of CAM to control for support group attendance.
Supported by the Canadian Breast Cancer Research Initiative. H.B. was funded by a Medical Research Counsel of Canada postdoctoral fellowship while conducting this research.
1. Eisenberg DM, Davis RB, Ettner SL, et al: Trends in alternative medicine use in the United States, 1990-1997: Results of a follow-up national survey. JAMA 280:1569-1575, 1998 2. Northcott H, Bachynsky J: Concurrent use of chiropractic, prescription medicines, nonprescription medicines and alternative health care. Soc Sci Med 37:431-435, 1993 3. Brigden ML: Unproven (questionable) cancer therapies. West J Med 163:463-469, 1995[Medline] 4. Yates P, Beadle G, Clavarino A, et al: Patients with terminal cancer who use alternative therapies: Their beliefs and practices. Sociol Health Illn 15:199-217, 1993 5. Lerner IJ, Kennedy BJ: The prevalence of questionable methods of cancer treatment in the United States. CA Cancer J Clin 42:181-191, 1992[Abstract] 6. Cassileth BR, Lusk EJ, Strouse TB, et al: Contemporary unorthodox treatments in cancer medicine. Ann Intern Med 101:105-112, 1984
7.
Downer SM, Cody MM, McCluskey P, et al: Pursuit and practice of complementary therapies by cancer patients receiving conventional treatment. BMJ 309:86-89, 1994
8.
Eisenberg DM, Kessler RC, Foster C, et al: Unconventional medicine in the United States: Prevalence, costs, and patterns of use. N Engl J Med 328:246-252, 1993 9. Mendenhall W, Ott L, Scheaffer RL: Elementary Survey Sampling. Belmont, CA,Wadsworth Publishing Company Inc, 1971 10. Henry GT: Practical Sampling. London, United Kingdom,Sage Publications, 1990 11. Boon H, Brown JB, Gavin A, et al: Breast cancer survivors’ perceptions of complementary/alternative medicine (CAM): Making the decision to use or not to use. Qual Health Care 9:639-653, 1999 12. Strull WM, Lo B, Charles G: Do patients want to participate in medical decision making? JAMA 252:2990-2994, 1984[Abstract] 13. Risberg T, Lund E, Wist E, et al: The use of non-proven therapy among patients treated in Norwegian oncology departments: A cross-sectional national multicentre study. Eur J Cancer 31A:1785-1789, 1995
14.
Burstein HJ, Gelber S, Guadagnoli E, et al: Use of alternative medicine by women with early-stage breast cancer. N Engl J Med 340:1733-1759, 1999 15. Montbriand MJ: Freedom of choice: An issue concerning alternate therapies chosen by patients with cancer. Oncol Nurs Forum 20:1195-1201, 1993[Medline] 16. Risberg T, Kaasa S, Wist E, et al: Why are cancer patients using non-proven complementary therapies? A cross-sectional multicentre study in Norway. Eur J Cancer 33:575-580, 1997 17. Cunningham AJ, Edmonds CVI, Jenkins GP, et al: A randomized controlled trial of the effects of group psychological therapy on survival in women with metastatic breast cancer. Psychooncology 7:508-517, 1998[Medline] 18. Devine EC, Westlake SK: The effects of psychoeducational care provided to adults with cancer: Meta-analysis of 116 studies. Oncol Nurs Forum 22:1369-1381, 1995[Medline] 20. Meyer TJ, Mark MM: Effects of psychosocial intervention with adult cancer patients: A meta-analysis of randomized experiments. Health Psychol 14:101-108, 1995[Medline] 21. Spiegel D, Bloom JR, Kraemer HC, et al: Effect of psychosocial treatment on survival of patients with metastatic breast cancer. Lancet 2:888-891, 1989[Medline] 22. Smith M, Boon H: Counseling cancer patients about herbal medicine. Patient Educ Couns 38:109-120, 1999[Medline] Submitted September 3, 1999; accepted February 24, 2000. This article has been cited by other articles:
| ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
TOP
ABSTRACT
INTRODUCTION
2 test for categorical demographic characteristics and t tests for continuous demographic characteristics and the measures listed above). Multivariate analysis was then conducted to determine the relative contribution of characteristics to a person’s CAM use or nonuse. The dependent variable (use/nonuse of CAM) was dichotomous; therefore, multiple logistic regression analysis was conducted. All characteristics and measures that were answered by at least 90% of the respondents and that obtained a P value of .05 in the bivariate analysis described above were included as independent variables in the multivariate model. 
Item reversed to calculate mean attitude score. 
