Complementary and alternative medicine (CAM) has recently attracted national attention in the United States because of its widespread use, associated costs, and unknown effects. A population-based survey (1) indicated that 4 out of 10 Americans used CAM for chronic conditions in 1997 and made an estimated 629 million visits to practitioners of alternative medicine, far exceeding the 388 million visits that were made to primary care physicians during the same year. In addition, the total out-of-pocket expenditures related to CAM use in 1997 were an estimated $27 billion; this figure is comparable to the out-of-pocket expenditures for all physician services (1). Because CAM use may have potential risks (for example, interaction with prescribed therapies or deferral of effective treatments) (2-5), the medical community has become interested in learning more about CAM from the patient's perspective (2, 6-8). Despite previous descriptive studies (1, 9-16), several clinically important questions remain. First, many studies report on whether patients have ever used CAM but do not report on current use or the frequency and magnitude of use. Second, our knowledge of patient factors that predict CAM use is limited. Third, although most persons use CAM along with conventional therapy (1, 9, 17, 18), many choose not to disclose CAM use to their physicians. Several studies suggest that some patients perceive that physicians would disapprove (11, 18, 19), but little is known about additional communication barriers. Finally, patients' reasons for using CAM are not understood but may be complex. The lack of a cure for and the unpredictable nature of some chronic illnesses may lead to a sense of personal helplessness in some patients (20, 21); these patients may consider CAM to be a risk-free supplement to conventional therapy (22-24). For other patients, the costs or side effects of conventional therapies may be additional concerns (23, 25). Rheumatologic conditions, such as osteoarthritis, rheumatoid arthritis, and fibromyalgia, provide an optimal disease framework in which to examine patients' reasons for using CAM and for discussing this use with their physicians. These conditions are prevalent (26), have no known cause or cure, are characterized by chronic pain and a variable disease course, and often adversely affect functional status. Previous studies indicated that 60% to 90% of persons with arthritis, particularly those with rheumatoid arthritis, have used CAM (10, 12, 18, 19, 27-35). Because some conditions (for example, rheumatoid arthritis) are treated with immunosuppressive drugs that may adversely interact with CAM, it is important to have a better understanding of decision making about CAM use in patients who have these conditions. We surveyed a representative clinical sample of patients who were currently receiving allopathic care for rheumatologic conditions to determine the prevalence and types of CAM used, patients' perceptions about CAM's efficacy, reasons for using CAM, potential patientphysician communication barriers about CAM use, and correlates of CAM use and discussion of CAM with a physician. Methods Setting and Patient Enrollment The institutional review board of Indiana University-Purdue University at Indianapolis, Indiana, approved our study. Patients were recruited from six outpatient sites: three university practices and three private rheumatology practices. The university sites included a municipal hospital that provides care for medically vulnerable and socioeconomically disadvantaged patients, a Veterans Affairs Medical Center, and a fee-for-service specialty care practice. Consecutive outpatients who kept a scheduled appointment with a rheumatologist during a 2-week period in 1997 were potentially eligible. Patients were excluded if they were new to the practice, were younger than 18 years of age, had dementia, or resided in a nursing home. Before each clinic session, two research assistants reviewed medical charts and attached brightly colored cards that contained a description of the survey to the charts of eligible patients. During the clinic visit, the rheumatologist handed these cards to the patients and briefly introduced the study. The research assistants approached patients after their visits to invite their participation in a health practices survey. Those who agreed to participate were given an appointment for a telephone survey, which was scheduled to take place within 2 weeks. All patients were blinded to the intent of the study. Definition of Complementary and Alternative Medicine We defined complementary and alternative medicine as any intervention not usually prescribed by physicians (for example, herbal remedies, chiropractic manipulations, high-dose vitamins, and elimination diets). Relaxation techniques, exercise programs, or over-the-counter salves (for example, Aspercreme) were not included because they are sometimes prescribed for pain management (36-38). Because we were interested in interventions with costs attached, we did not consider prayer a type of CAM. Study Procedures In the developmental phase of our study, we convened focus groups of patients who had rheumatoid arthritis and osteoarthritis to elicit beliefs about arthritis, reasons for using or not using CAM, and patientphysician communication about CAM (39). These data were used to develop a survey instrument that was pilot-tested among 75 patients who attended the rheumatology clinic at the Veterans Affairs Medical Center. During enrollment, two research assistants audited charts to obtain demographic information and all rheumatologic diagnoses for every eligible patient. Survey respondents answered questions on educational level, functional status (using the modified Stanford Health Assessment Questionnaire [40]), pain (using a 10-point numerical pain scale [41]), medications prescribed for rheumatologic conditions, psychological status (four questions on sleep, anxiety, stress, and depression) (42), learned helplessness (a psychological state in which persons expect their efforts to be ineffective, measured by using the helplessness subscale of the Rheumatology Attitudes Index) (43), number of visits to the rheumatologist in the previous 6 months, and satisfaction with care (44). Finally, patients were asked whether they used any treatment for their rheumatologic condition that their physician had not prescribed. The questionnaire contained a structured list of 12 types of CAM (Table 1), examples of each type, and open-ended questions to elicit information about other treatments that were not on the list. To maintain a nonjudgmental tone, we specifically avoided using the terms alternative, unconventional, or complementary when describing CAM. Table 1. Types, Frequency, and Perceived Efficacy of Individual Treatments in 146 Patients Who Used Complementary and Alternative Medicine Patients who reported using CAM for rheumatologic conditions were asked 1) whether they currently used CAM or had used CAM in the past, 2) their perceptions of its efficacy [that is, whether CAM worsened their condition, made no difference, helped somewhat, or helped substantially], and 3) whether they used CAM occasionally (once or twice) or regularly (daily, weekly, or monthly). We did not elicit further details about CAM use, such as number of visits or doses, lifetime use, or expenditures, because of respondent burden and concerns about the validity of this information. Finally, we gave each patient a list of possible reasons (each with a yes-no response) for using CAM and for discussing or not discussing CAM use with their physicians; patients were asked to indicate all applicable reasons. In addition, we asked open-ended questions to elicit any other reasons not contained on the lists. Definition of Persons Who Used Complementary and Alternative Medicine We defined persons who used CAM as those who reported ever using CAM at least once. Patients who reported using CAM at the time of the survey were classified as current users; patients who were not using CAM at the time of the survey were classified as past users, even if they had used CAM in the past year. Patients who reported regularly using at least one type of CAM (currently or in the past) were classified as regular users. Therefore, according to our definition, a patient who had regularly visited a chiropractor in the past but still occasionally applied topical therapies was considered a regular user. Magnitude of CAM use was categorized according to the number of individual treatments ever used: none, one or two, or three or more. Classification of Rheumatologic Diagnoses, Prescribed Therapies, and Other Variables We examined the relation between CAM use and disease-related factors (for example, rheumatologic diagnoses, immunosuppressive therapy, and severe pain). Because patients could have several rheumatologic diagnoses, we categorized patients by using a four-level hierarchical disease variable based on the rheumatologist's diagnosis: rheumatoid arthritis, fibromyalgia, osteoarthritis, or other rheumatologic conditions. In this model, patients with rheumatoid arthritis were considered to have rheumatoid arthritis even if they had another diagnosis (for example, fibromyalgia or osteoarthritis). Patients with a diagnosis of fibromyalgia but not of rheumatoid arthritis were classified as having fibromyalgia. Finally, patients with osteoarthritis but not fibromyalgia or rheumatoid arthritis were classified as having osteoarthritis. Patients were classified as receiving immunosuppressive treatment if they reported taking gold salts (any form), corticosteroids (any form), methotrexate, hydroxychloroquine, azathioprine, sulfasalazine, cyclosporine, cyclophosphamide, or penicillamine. Severe pain was defined a priori as a score of 5 or greater on a 10-point numerical pain scale. Statistical Analysis All analyses were performed by using PC-SAS, version 6.12, for Windows
[1]
T. Kaptchuk,et al.
The Persuasive Appeal of Alternative Medicine
,
1998,
Annals of Internal Medicine.
[2]
M. Wahlqvist,et al.
The use of unproven remedies for rheumatoid arthritis in Australia
,
1985,
The Medical journal of Australia.
[3]
Vecchio Pc.
Attitudes to alternative medicine by rheumatology outpatient attenders.
,
1994
.
[4]
E J Lusk,et al.
Contemporary unorthodox treatments in cancer medicine. A study of patients, treatments, and practitioners.
,
1984,
Annals of internal medicine.
[5]
T. Schnitzer,et al.
Guidelines for the medical management of osteoarthritis. Part II. Osteoarthritis of the knee. American College of Rheumatology.
,
1995,
Arthritis and rheumatism.
[6]
A. Maclennan,et al.
Prevalence and cost of alternative medicine in Australia
,
1996,
The Lancet.
[7]
D. Gray.
The treatment strategies of arthritis sufferers.
,
1985,
Social science & medicine.
[8]
N. Elder,et al.
Use of alternative health care by family practice patients.
,
1997,
Archives of family medicine.
[9]
C. Wiener.
The burden of rheumatoid arthritis: tolerating the uncertainty.
,
1975,
Social science & medicine.
[10]
T. Schnitzer,et al.
Guidelines for the medical management of osteoarthritis. Part II. Osteoarthritis of the knee. American College of Rheumatology.
,
1995,
Arthritis and rheumatism.
[11]
P. Kimmel,et al.
Poison on line--acute renal failure caused by oil of wormwood purchased through the Internet.
,
1997,
The New England journal of medicine.
[12]
M. Boisset,et al.
Alternative medicine use by rheumatology patients in a universal health care setting.
,
1994,
The Journal of rheumatology.
[13]
M. Jayson,et al.
Non-prescribed treatments in rheumatic diseases.
,
1983,
The Practitioner.
[14]
Kathleen M. Fairfield,et al.
Patterns of use, expenditures, and perceived efficacy of complementary and alternative therapies in HIV-infected patients.
,
1998,
Archives of internal medicine.
[15]
S. Musser,et al.
Contamination of botanical dietary supplements by Digitalis lanata.
,
1998,
The New England journal of medicine.
[16]
J P Kassirer,et al.
Alternative medicine--the risks of untested and unregulated remedies.
,
1998,
The New England journal of medicine.
[17]
S. Soraci,et al.
Assessment of patient satisfaction in activities of daily living using a modified Stanford Health Assessment Questionnaire.
,
1983,
Arthritis and rheumatism.
[18]
R. Kessler,et al.
Trends in alternative medicine use in the United States, 1990-1997: results of a follow-up national survey.
,
1998,
JAMA.
[19]
M. Weinberger,et al.
Using focus groups to understand arthritis patients' perceptions about unconventional therapy.
,
1998,
Arthritis care and research : the official journal of the Arthritis Health Professions Association.
[20]
P. Nicassio,et al.
Psychosocial factors associated with complementary treatment use in fibromyalgia.
,
1997,
The Journal of rheumatology.
[21]
J. Esdaile,et al.
Alternative medicine use in fibromyalgia syndrome.
,
1996,
Arthritis care and research : the official journal of the Arthritis Health Professions Association.
[22]
E. Campion.
Why unconventional medicine?
,
1993,
The New England journal of medicine.
[23]
John A. Astin.
Why Patients Use Alternative Medicine: Results of a National Study
,
1999
.
[24]
D. Gray.
Part 3: “Arthritis”: Variation in beliefs about joint disease
,
1983
.
[25]
I. Miller,et al.
Learned helplessness in humans: A review and attribution-theory model.
,
1979
.
[26]
M. Coppes,et al.
Alternative therapies for the treatment of childhood cancer.
,
1998,
The New England journal of medicine.
[27]
J. Dalen.
"Conventional" and "unconventional" medicine: can they be integrated?
,
1998,
Archives of internal medicine.
[28]
C. Helmick,et al.
Estimates of the prevalence of arthritis and selected musculoskeletal disorders in the United States.
,
1998,
Arthritis and rheumatism.
[29]
J P Allegrante,et al.
Supervised Fitness Walking in Patients with Osteoarthritis of the Knee
,
1992,
Annals of Internal Medicine.
[30]
T. Schnitzer,et al.
Guidelines for the medical management of osteoarthritis. Part I. Osteoarthritis of the hip. American College of Rheumatology.
,
1995,
Arthritis and rheumatism.
[31]
J. Kronenfeld,et al.
The use of unorthodox therapies and marginal practitioners.
,
1982,
Social science & medicine.
[32]
J. Jordan,et al.
Gender and ethnic differences in alternative and conventional arthritis remedy use among community-dwelling rural adults with arthritis.
,
1996,
Arthritis care and research : the official journal of the Arthritis Health Professions Association.
[33]
J. Rasker,et al.
Rheumatologists and their patients who seek alternative care: an agreement to disagree.
,
1992,
British journal of rheumatology.
[34]
D. Eisenberg,et al.
Advising Patients Who Seek Alternative Medical Therapies
,
1997,
Annals of Internal Medicine.
[35]
R. Kaplan,et al.
Factors affecting unprescribed remedy use among people with self-reported arthritis.
,
1993,
Arthritis care and research : the official journal of the Arthritis Health Professions Association.
[36]
H. Valkenburg,et al.
The arthritis sufferer and the community: a comparison of arthritis sufferers in rural and urban areas.
,
1988,
Annals of the rheumatic diseases.
[37]
L E Kazis,et al.
Health status reports in the care of patients with rheumatoid arthritis.
,
1990,
Journal of clinical epidemiology.
[38]
R M Kaplan,et al.
Prevalence of the use of unconventional remedies for arthritis in a metropolitan community.
,
1989,
Arthritis and rheumatism.
[39]
R. Kessler,et al.
Unconventional medicine in the United States. Prevalence, costs, and patterns of use.
,
1993,
The New England journal of medicine.
[40]
F. Davidoff.
Weighing the Alternatives: Lessons from the Paradoxes of Alternative Medicine
,
1998,
Annals of Internal Medicine.
[41]
K. Thomas,et al.
Use of non-orthodox and conventional health care in Great Britain.
,
1991,
BMJ.
[42]
W. Downie,et al.
Studies with pain rating scales.
,
1978,
Annals of the rheumatic diseases.
[43]
R. Devellis,et al.
A brief measure of helplessness in rheumatic disease: the helplessness subscale of the Rheumatology Attitudes Index.
,
1993,
The Journal of rheumatology.