Alternative medicines used by patients with head and neck cancer. NIH-OAM indicates National Institutes of Health–Office of Alternative Medicine.
Individuals who introduced 77 patients with head and neck cancer to alternative medicine.
Factors that limited or prevented 200 patients with head and neck cancer from using alternative medicine.
Knowledgeable or informative sources of information regarding alternative cancer therapies in the opinion of 200 patients with head and neck cancer. AM indicates alternative medicine.
Reasons for use and perceived benefit of alternative medicine among 77 patients with head and neck cancer (amounts total to >100% because some patients used >1 therapy type). Asterisk indicates P<.05 comparing response of helped vs uncertain or did not help responses in symptomatic relief and not for cancer categories.
Warrick PD, Irish JC, Morningstar M, Gilbert R, Brown D, Gullane P. Use of Alternative Medicine Among Patients With Head and Neck Cancer. Arch Otolaryngol Head Neck Surg. 1999;125(5):573-579. doi:10.1001/archotol.125.5.573
To determine the prevalence of alternative medicine use in the population with head and neck cancer and correlate with demographics and tumor characteristics.
Cross-sectional survey study.
Two tertiary cancer centers.
Two hundred consecutive outpatients with consecutive head and neck cancer.
A 10- to 25-minute patient interview administered by primary investigator.
Main Outcome Measures
Demographic markers (sex, age, education, household income, marital status, ethnic background, and geographic location); tumor characteristics (tumor site, pathology, staging, time since diagnosis, and incidence of recurrence); conventional mode of treatment; attitudes regarding alternative medicine, source of exposure to alternative medicine, therapeutic rationale, treatment efficacy, sources of information, and discussions with physicians about alternative medicine.
Seventy-seven (38.5%) of 200 patients had used alternative medicine for some purpose, and 45 (22.5%) of 200 did so for head and neck cancer. Increased use of alternative medicine occurred among patients of younger age, having a postsecondary education, higher personal income, and Indo-Asian extraction. Of those patients using alternative anticancer therapy, increased use was noted among patients with tumors of the nasopharynx, nonsquamous cell carcinoma pathology, and recurrent disease. Conventional mode of treatment had no association with alternative medicine use. Physicians were believed to be the most knowledgeable about alternative medicine, while the usual proponents of alternative medicine were identified least frequently.
Alternative cancer therapy use among patients with head and neck cancer was 22.5%, with increased use in younger, affluent, better educated patients, and those of Indo-Asian extraction. Patients view physicians as being knowledgeable about alternative medicine. Otolaryngologists should inform themselves about alternative medicine to counsel patients more effectively.
THE POPULARITY of alternative medicine in North America has grown at an astonishing rate in recent years. In 1990, an estimated $13.7 billion were spent on alternative therapies by Americans.1 Most of this amount ($10.3 billion) was spent outside of insurance coverage, which represented about 80% of nationwide noninsured hospital expenditures during the same year. A telephone survey of 36,000 US households conducted in 1988 by the American Cancer Society's Committee on Questionable Cancer Management determined that 9% of patients with cancer had used some form of alternative cancer therapy.2 Use of alternative medicine was noted to increase with higher education and income, geographical location (Mountain, Pacific, and New England regions had the highest prevalence), and tumor site (spine, brain, ovary, and lymphoma tumors had the highest prevalence). Other studies3 have noted overall prevalence rates of alternative medicine to be as high as 54% among patients with cancer . The enormous popularity of these methods was reflected in the establishment by the 1992 US Congress of the National Institutes of Health–Office of Alternative Medicine. This office has provided the following standardized classification of alternative medicine4: diet and nutrition; mind-body techniques; bioelectromagnetics; traditional and folk remedies and alternative systems of medical practice; pharmacological and biologic treatments; manual healing methods; and herbal medicine. Moreover, at least 27 US medical schools offer courses in alternative medicine.5
Other authors1 have noted the difficulty implicit in defining alternative therapies. Alternative therapies encompass a broad range of practices and belief systems, so the definition must be sufficiently broad to include these methods, while excluding conventional modalities. Furthermore, a definition that implies bias regarding the efficacy of alternative therapies, or lack thereof, may discourage some patients from full disclosure of their experience. Hence, we decided to use governmental legislation as the means to discriminate among conventional and alternative cancer therapies. The Regulated Health Professions Act (1991) Schedule 1 lists the self-regulated health professions in Ontario.6 The 22 professions included in this act are audiology and speech language pathology, chiropody, chiropractic, dental hygiene, dental technology, dentistry, denturism, dietetics, massage therapy, medical laboratory technology, medical radiation technology, medicine, midwifery, nursing, occupational therapy, opticianry, optometry, pharmacy, physiotherapy, psychology, and respiratory therapy. Vocations not listed in the Regulated Health Professions Act, and not requiring a physician's referral provided the definition for alternative medicine. This piece of legislation provided an objective, readily accessible definition that minimized bias, while differentiating conventional from alternative medicine.
Few studies have attempted to measure the prevalence of alternative medicine use among patients with head and neck cancer. A Norwegian questionnaire of 252 patients with diverse tumor sites reported a 6.0% use of "unproven" therapies among a small head and neck cancer cohort of 15 patients.7 The large telephone survey by Lerner and Kennedy2 identified 81 patients with mouth cancer who were comparatively high users of alternative medicine (12.8%), vs 161 patients with throat/larynx cancer who had a much lower use (5.8%). However, the study was encumbered by the verification problems of a telephone poll and 35% of the data were derived from family members about patients who had died as long as 2 years ago. Moreover, the study was conducted a decade ago. Therefore, limited data are available regarding the use of alternative medicine in the population with head and neck cancer.
Given the paucity of data about this topic, we undertook the current study to estimate the prevalence of alternative medicine use in the population with head and neck cancer. Patients treated at the Wharton Head and Neck Centre of the Princess Margaret Hospital and at Toronto-Sunnybrook Regional Cancer Centre, while largely composed of residents of the Toronto area and surrounding Central Ontario region, are derived from a referral base encompassing all of Canada. As such, they represent a diverse population who is likely representative of most, if not all, of the North American population. We intended to analyze the correlation of alternative medicine use with patient demographics and tumor characteristics. If alternative medicines were used, we were interested in the temporal relationship between alternative and conventional therapy, the association, if any, between adverse effects of conventional treatment and the use of alternative medicine, and the individual who introduced the patient to alternative medicine. We asked about factors affecting a patient's decision to use alternative medicine, as well as their perception of knowledgeable sources of information and their experience with physicians in discussing alternative medicine. The utility of this information will be immediately apparent to both head and neck oncologists and general otolaryngologists, who invariably confront this difficult issue in day-to-day practice.
A total of 200 patients with head and neck cancer previously treated with surgery, radiation, chemotherapy, or a combination of modalities and returning for regular follow-up at either the Wharton Head and Neck Centre of the Princess Margaret Hospital/The Toronto Hospital or the Toronto-Sunnybrook Regional Cancer Centre during September 1997-June 1998 were enrolled in the study. Patients were excluded if they were younger than 18 years, not residents of Canada, were inpatients, or had a history of malignancy outside of the head and neck in the last 5 years. No minimum period of time had elapsed since the completion of conventional treatment; however, all patients were aware of their diagnosis for at least 2 months at the time of interview. University and institutional ethics board approval was obtained from both hospital sites to conduct interviews with patients. Given the content of the interview, written informed consent was not deemed necessary by any of the committees, and verbal informed consent for participation was obtained from each patient. All were able to answer interview questions either alone, or with the help of an accompanying family member or friend.
Each patient was interviewed for 10 to 25 minutes by the same interviewer (P.D.W.) in the head and neck cancer clinic examination room either before, or following their routine follow-up visit. At the beginning of this time, each patient was orientated to the structure of the standardized interview. Each patient gave verbal consent before commencing the interview. Patient demographic information (sex, age, highest education level, household income, marital status, employment status, occupation, and ethnic background) were determined. Geographical location, tumor characteristics (tumor site, pathology, staging, time of diagnosis, and incidence of recurrence), and mode of conventional treatment (radiation, surgery, chemotherapy, or combination) were obtained from the patient's chart. Following this, the definition of alternative medicine for this study, ie, those therapies not falling under governmental self-regulation legislation in Ontario and not requiring a physician's referral, was clarified. Using a standardized format, patients were queried about their use of alternative medicines.
According to the National Institutes of Health–Office of Alternative Medicine classification, patients were asked about their use of herbal medicines (eg, Essiac, Laetrile, Echinacea, ginseng, or oral aloe), manual healing methods (eg, Shiatsu massage or reflexology), pharmacological treatments (eg, shark cartilage or mushroom tablets), traditional and folk remedies (eg, Chinese, Ayurvedic, and Native healing methods), mind-body techniques (eg, hypnosis, meditation, or yoga), and diet and nutrition (eg, megavitamins, antioxidants, metabolic therapy, or macrobiotic therapy). For each treatment, patients were asked the reason for using the therapy, the duration of use, and whether they thought the treatment had achieved the desired outcome. The definition for use of an alternative medicine was a period of at least 4 weeks' duration for purposes other than food supplementation or personal pleasure during the last 5 years. In other words, the patient had to attribute some medicinal benefit to the treatment, such as the ability to "fight cancer," "give energy," or "boost the immune system," for the treatment to be considered an alternative medicine. When asked about the outcome of a therapy, a patient was considered to have derived benefit if at least 1 therapy for a given purpose (ie, anticancer, symptomatic relief, or not for cancer) was stated to have "helped" achieve the desired outcome for which it was taken. Because of its relative obscurity, patients were not specifically queried about their use of bioelectromagnetic therapy. Finally, we did not determine the prevalence of prayer or exercise, as some studies have done.1
Next, patients were asked about their experience of adverse effects of their cancer treatment. Patients were asked specifically if they had experienced weight loss, nausea, vomiting, diarrhea, constipation, dry mouth, taste changes, appetite changes, fatigue, or irritability as a result of their conventional cancer treatment. These responses were compared with the reasons for use of alternative medicine to determine if adverse effects played a role in the decision to use alternative medicine. We asked each patient who used alternative medicine who had introduced them to alternative therapies (family member or friend, media, physician, or other). All patients were next asked "What factors limit or prevent your use of alternative therapies?", after which they were asked about the role of cost, lack of endorsement by the medical profession, lack of medical research, problems with access to therapy, and opinions of friends or family in their decision process. Next, patients were asked about their perception of the knowledge of several health care professionals, publications, and alternative vocational workers about the use of alternative cancer treatments. Patients were asked "In your opinion, who is/are knowledgeable or informative sources of information about alternative cancer therapies?" Finally, patients were asked whether they had discussed alternative medicine with their family physician, oncologist, or surgeon, and if so, the nature of the clinician's response.
Comparison of demographic factors between hospital sites, correlates of alternative medicine use, and perceived benefit were evaluated using independent χ2 analyses. Continuous data (age and household income) were analyzed using the χ2 test for linear trend. For all analyses, P<.05 was considered significant.
A total of 200 patients, 144 at the Wharton Head and Neck Centre within the Princess Margaret Hospital/The Toronto Hospital and 56 at the Toronto-Sunnybrook Regional Cancer Centre, were interviewed. There were no demographic differences between hospital sites. The use of some treatment modalities differed between the sites, in that Wharton Head and Neck Centre treated more often with radiation with or without chemotherapy (41.7% vs 19.6%), while the Toronto-Sunnybrook Regional Cancer Centre more often treated with surgery (44.6% vs 22.2%) (P=.002).
All patients who were eligible to be enrolled completed the interview. Three patients declined to provide information about their household incomes. All other demographic information was complete (Table 1). Tumor characteristics are shown in Table 2. Other than staging information, for which data were available for 155 (77.5%) of 200 patients, all other data were complete.
A total of 77 patients (38.5%) reported the use of at least 1 alternative medicine, and 45 (58%) of these 77 patients had used an alternative medicine either as an anticancer treatment or to provide symptomatic relief for cancer or its treatment. Of those patients using alternative anticancer therapy, 16 (36%) of 45 had not used any other alternative medicine prior to being diagnosed as having cancer. In addition, 12 (27%) of 45 were using 3 or more therapies against cancer. The majority of agents (50.5%) used by patients in this study are in the herbal medicine class of the National Institutes of Health–Office of Alternative Medicine classification, with pharmacological agents being the next most common agents used (16.9%) (Figure 1). An additional 12 patients had used an alternative medicine, but did not meet the criteria for use in this study.
Higher prevalence of alternative medicine use was correlated with younger age (particularly <50 years) (P<.001); higher household income, particularly more than 60,000 Canadian dollars (about 40,000 US dollars) (P=.001); community college education or higher (P=.002); Indo-Asian extraction (P<.001); and nonsquamous cell carcinoma pathology (P=.03). Overall prevalence did not correlate with sex, geographic location, tumor site, stage, time elapsed since diagnosis, or incidence of recurrence. However, among users of alternative anticancer therapies, patients with tumors of the nasopharynx (P=.02), and recurrent disease (P=.003) were more frequent users than other tumor sites and nonrecurrent disease, respectively. Conventional mode of treatment did not impact on the use of alternative medicine in this study (Table 3 and Table 4).
Patients' perception of the efficacy of alternative medicine varied with the reason for which the treatment had been used. Agents not used for cancer or for symptomatic relief of cancer or its treatment had greater perceived benefit (76% and 66%, respectively) than anticancer treatments (44%) (P=.01).
Unfortunately, 2 users delayed their diagnosis for 2 and 4 months, respectively, on the presumption that they had cancer. They instead opted to self-medicate, one under the guidance of a naturopath.
Adverse effects of conventional treatment provided a weak impetus for using alternative medicine, occurring in only 13 (29%) of 45 cases. Four patients reported having used hypnosis or acupuncture to help them quit smoking.
Inquiry into the attitudes and experiences of patients regarding alternative medicine revealed the following results. A majority (69%) of patients were introduced to alternative medicine by a friend or family member (Figure 2) (no data are available for 2 patients pertaining to the individual who introduced them to alternative medicine). Regarding the factors that limit or prevent their use of alternative medicine, patients reported that lack of endorsement from the medical profession (51%) or lack of medical research (44%) were the most likely factors to limit their use of alternative medicine (Figure 3). Surprisingly, the majority of patients reported that physicians were a knowledgeable source of information about alternative medicine, and reported that the common proponents of alternative medicine (homeopaths, naturopaths, and chiropractors) were least knowledgeable (Figure 4). Among patients who had used alternative medicine, a larger percentage believed that common proponents of alternative medicine were knowledgeable, but essentially agreed with nonusers that physicians are the most knowledgeable sources of information about alternative medicine. However, despite this perception, only 12 (27%) of 45 users of alternative medicine for cancer had discussed this decision with a physician. Physician responses were generally supportive in 3 cases, generally discouraging in 3 cases, and equivocal in 6 cases.
The use of alternative medicine has been noted among patients with cancer throughout every era.8 However, these methods are now being met with unprecedented support from patients, the popular press, government, insurance agencies, and even conventional medical establishments. The use of alternative medicine is influenced by societal views of power of the individual, a need to understand the diseases that ail us, a general tendency to dismiss research data in favor of personal experience, public frustration with the failure of modern medicine to significantly improve cure rates, and a Western belief that "cancer can be beaten," at least in part, with positive attitudes.8 In an effort to understand this growing phenomenon better, and to quantify its prevalence in the population with head and neck cancer, we designed the current interview-based study at 2 large cancer treatment centers.
Literature in other cancer populations has demonstrated an association with alternative medicine use among the following populations: female sex,9 white race,3 younger age,7 higher education,2,3,7 higher income,2 geographical location,2,7 lymphoma pathology,3 longer time since diagnosis,2 presence of distant metastases and/or relapse,7 and palliative treatment intent.7 Studies of alternative medicine use among oncology patients whose methodology was similar to the current study are summarized in Table 2.
Many, although not all, of the correlates with alternative medicine use listed earlier were also identified in this study. Additionally, the Indo-Asian population was noted in our study to have a higher prevalence of alternative medicine use. Since virtually all users of alternative medicine in this class had used treatments indigenous to their native regions, this observation probably reflects in most cases an adherence to cultural norms, rather than acceptance of the values that usually lead patients to seek out alternative medicine. Moreover, the relatively large number of patients (n=18) in this group reflects the large population of this ethnicity in the greater Toronto region. Specific to the population with head and neck cancer, nonsquamous cell pathology, the nasopharyngeal tumor site (likely reflective of the high Asian population presenting with tumors of this site), and recurrent disease were noted to have higher use of alternative medicine, the latter 2 being specific to alternative medicine use directed against cancer.
Alternative medicine users in this study most often took oral forms of alternative medicine, including herbal medicine (especially Essiac) and pharmacological treatments (especially shark cartilage). Studies in previous decades have noted the popularity of treatments such as metabolic therapy or the macrobiotic diet,3 and healing.9,10 Our study did not identify a single user of either of these popular cancer diets of the 1980s,11 which restrict intake to an elaborate assortment of grains, vegetables, and soybeans. Moreover, our study identified only 2 patients who had been treated by religious healers. Clearly, the demographics of alternative medicine use have changed since these data were published. The ease with which these agents may now be procured (eg, at shopping mall herbal medicine shops) appears to have secured for them a large component of alternative medicine usage, at least among patients with head and neck cancer.
Most patients taking alternative medicine for their cancer were taking some form of treatment directed against the cancer itself (Figure 5). Patients tended to regard the ability of an alternative treatment to effect its desired outcome with increasing uncertainty as one moved from treatments not used for cancer, to treatments providing symptomatic relief from cancer or its treatment, to treatments directed against cancer itself.
Most users of alternative medicine were introduced to these therapies through a friend or family member (word of mouth). This contradicts previous evidence from a decade ago that found that patients acquire information from sources approximately evenly divided between physicians, media, word of mouth, and other sources.2 With increasing public awareness, the influence of word of mouth transfer of information may be on the rise.
Patients with head and neck cancer appear to be most strongly influenced in their decision to use alternative medicine by the traditional tenets of medical knowledge, ie, clinician consensus and a research basis. A majority of patients believed that the lack of support from physicians and/or lack of research were factors that limited or prevented their use of alternative medicine, and these factors were the 2 most frequently mentioned. This finding should reassure clinicians that most patients will respond favorably to rationale based on currently available knowledge of alternative therapies.
Perhaps the most interesting finding of this study is that patients, users and nonusers of alternative medicine alike, regard physicians as being the most knowledgeable sources of information about alternative medicine. Conversely, most patients, particularly nonusers of alternative medicine, regarded the common proponents of alternative medicine (homeopaths, naturopaths, and herbalists) as being among the least knowledgeable about alternative medicine. This finding is in stark contrast to our belief that most clinicians, even head and neck oncologists, know little about alternative therapies' safety, efficacy, or current developments. We contend that this public perception of a strong knowledge base about alternative medicines among physicians is likely to change over the next few years if clinicians fail to educate themselves about these treatments.
In summary, our study demonstrated that the use of alternative medicine among patients with head and neck cancer correlates with age younger than 50 years, postsecondary education, income more than $40,000 (US dollar), Indo-Asian extraction, and nonsquamous cell carcinoma pathology. Contrary to other studies, no correlation of alternative medicine use with sex, geographical location, tumor staging, or time elapsed since diagnosis was identified. The use of alternative medicine specifically to fight cancer correlated with the above-mentioned factors and with tumors of the nasopharynx and recurrent disease. Most alternative therapies used by this population are herbal medicines. These and other anticancer treatments are taken with the intent of fighting cancer directly, as an adjunct to conventional treatment, rather than to treat the adverse effects of conventional treatment. Most patients obtain information about alternative therapies from friends and family. A majority of patients limit or avoid the use of alternative medicine based on discouragement from their physicians and a lack of solid medical evidence. Finally, patients believe their physicians to be the most knowledgeable sources of information about alternative therapies. We hope that this study will serve as an impetus for otolaryngologists to educate themselves about alternative medicines.
Accepted for publication December 18, 1998.
Corresponding author: Jonathan Irish, MD, EN7-228, 200 Elizabeth St, Toronto, Ontario, Canada M5G 2C4 (e-mail: firstname.lastname@example.org).