Abstract
Context: Many patients with multiple sclerosis use complementary and alternative medicine (CAM) to supplement their traditional treatment.
Objective: To identify both the prevalence and frequency of use of therapies other than disease-modifying agents (DMAs), including CAM, among patients with multiple sclerosis.
Design: The authors administered a 13-question survey regarding patients' current use of non-DMA therapies—including dietary supplements, exercise, and “true” CAM (eg, acupuncture, chiropractic, massage)—and mainstream treatments, including physical therapy and osteopathic manipulative treatment. Patients rated their level of disability on a scale of 1 to 10 (with 10 being most severe).
Setting: A hospital outpatient clinic in Philadelphia, Pennsylvania.
Patients: Inclusion criteria were physician-confirmed multiple sclerosis (either relapsing-remitting or progressive), regardless of sex, duration of disease, age at onset, disability level, or type of disease. Patients were excluded if they were younger than 18 years.
Main Outcome Measure: Patient-reported use of non-DMA therapies and perception of disability.
Results: A total of 111 patients with multiple sclerosis completed the survey properly. All respondents used non-DMA therapies. Twenty-three patients (20.7%) used these therapies without concomitantly taking a DMA. A plurality (34.8%) of those patients reported a disability score of 7 or 8. Sixty-two of the 88 participants (70.5 %) who used DMAs reported disability scores of 5 or less. Sixty-five patients (58.6.%) reported exercising on a weekly basis. Among those patients, 47 (72.3%) reported a disability score of 5 or less. Sixty-four patients (57.7%) used such CAM therapies as acupuncture and massage, or such other non-DMA treatments as osteopathic manipulative treatment and psychotherapy. Among those patients, 37 (64.9%) reported a disability score of 5 or less.
Conclusion: Many patients with multiple sclerosis are seeking more than traditional medical treatment. Physicians and other health care professionals must be aware of the extensive use of alternative modalities among these patients, and these professionals must provide guidance and monitoring in use of these therapies to improve outcomes.
By conservative estimates, 400,000 people in the United States have multiple sclerosis.
1 Many patients with this condition are treated with 1 of 3 first-line disease-modifying agents (DMAs): interferon beta-1a (Avonex, Biogen Idec Inc, Cambridge, Massachusetts; Rebif, EMD Serono Inc, Rockland, Massachusetts, and Pfizer Inc, New York, New York); interferon beta-1b (Betaseron, Bayer HealthCare Pharmaceuticals, Montville, New Jersey); or glatiramer acetate (Copaxone, Teva Neuroscience Inc, Kansas City, Missouri).
1 However, multiple sclerosis is a complicated disease with far-reaching effects, and many patients turn to additional measures in an effort to combat its progression.
2-4 Some researchers and physicians have speculated that the natural history of multiple sclerosis can be altered with lifestyle and dietary modifications or with maintenance of one's general health and well-being to decrease the effects of natural stressors on the body.
5-9 Unfortunately, validated quantitative evidence for these speculations is lacking.
10
Patients are not waiting for the medical community to assist them in establishing therapeutic regimens to use in conjunction with conventional medical treatments. Physicians and other health care professionals treating patients with multiple sclerosis need to be aware of their patients' use of complementary and alternative medicine (CAM) in order to advise them on CAM use, on possible adverse effects of CAM, and on possible interactions of CAM therapies with conventional agents.
Currently, to our knowledge, there is no consensus in the medical community regarding which therapies are considered alternative, complementary, or unconventional.
11 Definitions of CAM vary widely, and many types of therapy not proven to alter disease progression to a statistically significant degree are nevertheless recommended by physicians to their patients in conjunction with DMAs. Complementary and alternative medicine has been defined as “unconventional medicine,”
12 and the term generally refers to forms of treatment not taught widely in medical schools or not typically available in hospitals.
13,14
Our study considered 3 types of non-DMA therapies used by patients with multiple sclerosis: (1) dietary supplements (eg, vitamins and minerals); (2) exercise modalities, including yoga; and (3) therapies that may be considered “true” CAM, such as acupuncture, chiropractic, and massage therapy. We also considered mainstream treatments and therapies for patients with multiple sclerosis, such as osteopathic manipulative treatment (OMT), physical therapy, and behavioral therapy. We sought data on the use of these various therapies by patients with multiple sclerosis and on whether these therapies decreased patients' perceived disability.
The present study was performed at Drexel University College of Medicine in Philadelphia, Pennsylvania, and approved by the university's institutional review board. The present survey-based study was conducted between February 2010 and April 2010 to identify both the prevalence and frequency of use of non-DMA therapies, including CAM, by patients with multiple sclerosis. All patients with physician-confirmed multiple sclerosis, regardless of sex, duration of disease, age at onset, disability level, or type of disease, were eligible to participate in this study. Included patients needed to have previously established multiple sclerosis of either the relapsing-remitting or the progressive type. Patients were excluded if they were younger than 18 years.
Patients could access the survey by means of 1 of 2 routes: (1) at 1 of 2 Drexel University College of Medicine neurology outpatient clinics in Philadelphia or (2) via a link on the College of Medicine's multiple sclerosis Web page. The questionnaire was posted on the Survey Monkey Web site (
http://www.surveymonkey.com). The confidentiality protocol included signs posted in each neurology outpatient office asking patients with multiple sclerosis whether they would like to fill out a survey. Surveys were attached to the signs. The print and Web surveys were identical. After completing the print survey, which could be taken home to be completed, patients returned the form by dropping it into a box at the clinic. Surveys were neither handed out nor collected by the office staff. Patients submitted the Web survey electronically. Neither the paper nor electronic survey required patient identifiers, so no associations could be made with the individuals who completed the survey.
The survey included 14 questions (most were fill-in-the-blank, some were multiple choice) divided into 4 categories. The first category was demographic information of the study participants, such as age, age at diagnosis, and sex. The next set of questions focused on specific characteristics of the patient's disease, including duration of disease, DMAs the patient was taking, number of relapses, number of pulse steroid infusions in the past 4 years, and form of multiple sclerosis (ie, relapsing-remitting or progressive). The third set of questions focused on the patient's use of non-DMA therapies. Patients were asked about their dietary interventions, such as vitamins and minerals, and about their exercise activities used for more than 30 days. They were also asked whether they used any other therapeutic modalities to help them combat the symptoms of multiple sclerosis. Finally, patients were asked to rate their disability on a scale of 1 to 10, with 10 being completely debilitating. Disability was rated on a subjective basis.
Data were compiled and analyzed using the PASW Statistics 18 program (SPSS Inc, Chicago, Illinois).
A total of 133 individuals submitted the survey. However, only 111 of the surveys were used for data analysis. The remaining 22 surveys were excluded because they were incomplete or contained illegible answers. The survey results are presented in the
Table. Ninety-seven participants (87.4%) were women, and the mean (standard deviation [SD]) age of all participants was 44.9 (11.9) years. The participants' mean (SD) age at onset of multiple sclerosis was 35.6 (10.5) years. Eighty-one participants (73.0%) reported being diagnosed as having relapsing-remitting multiple sclerosis.
Table.
Demographics and DMA and non-DMA Use Among Patients With Multiple Sclerosis (N=111)
Survey Question | Findinga |
Age, y, mean (SD) | 44.9 (11.9) |
Sex, women | 97 (87.4) |
Age at Diagnosis of MS, y, mean (SD) | 35.6 (10.5) |
Current DMA for MS | 88 (79.3) |
Avonex (interferon beta-1a) | 20 (18.0) |
Betaseron (interferon beta-1b) | 9 (8.1) |
Copaxone (glatiramer acetate) | 35 (31.5) |
Extavia (interferon beta-1b) | 1 (0.9) |
Rebif (interferon beta-1a) | 11 (9.9) |
Tysabri (natalizumab) | 8 (7.2) |
Other | 4 (3.6) |
None | 23 (20.7) |
Months on Current DMA, mean (SD) | 42.2 (42.4) |
Total Months on Any DMA, mean (SD) | 75.8 (59.8) |
Relapses,b mean (SD) | 3.8 (6.1) |
IV Steroid Treatments,b mean (SD) | 3.7 (11.6) |
Current MS Diagnosis | |
Relapsing-remitting | 81 (73.0) |
Progressive | 16 (14.4) |
Other | 14 (12.6) |
Supplementsc | 111 (100) |
B vitamins | 21 (18.9) |
Vitamin D | 36 (32.4) |
Exercise Activitiesc | 65 (58.6) |
CAM/other Non-DMAd | 64 (57.7) |
Acupuncture | 8 (7.2) |
Massage therapy | 20 (18.0) |
OMT | 6 (5.4) |
Physical therapy | 53 (47.7) |
Psychotherapy | 13 (11.7) |
Reflexology | 5 (4.5) |
Other | 5 (4.5) |
Table.
Demographics and DMA and non-DMA Use Among Patients With Multiple Sclerosis (N=111)
Survey Question | Findinga |
Age, y, mean (SD) | 44.9 (11.9) |
Sex, women | 97 (87.4) |
Age at Diagnosis of MS, y, mean (SD) | 35.6 (10.5) |
Current DMA for MS | 88 (79.3) |
Avonex (interferon beta-1a) | 20 (18.0) |
Betaseron (interferon beta-1b) | 9 (8.1) |
Copaxone (glatiramer acetate) | 35 (31.5) |
Extavia (interferon beta-1b) | 1 (0.9) |
Rebif (interferon beta-1a) | 11 (9.9) |
Tysabri (natalizumab) | 8 (7.2) |
Other | 4 (3.6) |
None | 23 (20.7) |
Months on Current DMA, mean (SD) | 42.2 (42.4) |
Total Months on Any DMA, mean (SD) | 75.8 (59.8) |
Relapses,b mean (SD) | 3.8 (6.1) |
IV Steroid Treatments,b mean (SD) | 3.7 (11.6) |
Current MS Diagnosis | |
Relapsing-remitting | 81 (73.0) |
Progressive | 16 (14.4) |
Other | 14 (12.6) |
Supplementsc | 111 (100) |
B vitamins | 21 (18.9) |
Vitamin D | 36 (32.4) |
Exercise Activitiesc | 65 (58.6) |
CAM/other Non-DMAd | 64 (57.7) |
Acupuncture | 8 (7.2) |
Massage therapy | 20 (18.0) |
OMT | 6 (5.4) |
Physical therapy | 53 (47.7) |
Psychotherapy | 13 (11.7) |
Reflexology | 5 (4.5) |
Other | 5 (4.5) |
×
Eighty-eight participants (79.3%) indicated that they were taking at least 1 of the conventional DMAs. More patients (35 [31.5%]) were taking glatiramer (ie, Copaxone) than any other DMA (
Figure 1). The mean number of relapses among all participants in the past 4 years was 3.8 (6.1). The mean (SD) number of months that participants had been taking their current DMA was 42.2 (42.4). The mean (SD) number of months that participants had taken any form of DMA was 75.8 (59.8). The mean (SD) number of inpatient or outpatient intravenous steroid treatments that patients reported undergoing in the past 4 years was 3.7 (11.6).
Of the 111 participants in the study, 100% had used a CAM or other non-DMA remedy, such as supplements or exercise. Among the 23 participants (20.7%) who reported not currently using any DMA, a plurality (8 [34.8%]) reported a disability score of 7 or 8 on the 10-point scale. Sixty-two of the 88 participants (70.5%) who reported currently using a DMA scored their disability at 5 or lower on the same 10-point scale.
All 111 participants used dietary supplements for at least 30 days; 65 patients (58.6%) used exercise for at least 30 days; and 64 patients (57.7%) used such CAM forms of therapy as acupuncture and massage or other non-DMA treatments, such as OMT and psychotherapy. Although all of the participants in the study consumed supplements, more patients (36 [32.4%]) took vitamin D than any other vitamin supplement. The second most prevalent type of supplement consumed by the study participants consisted of the B vitamins (21 [18.9%]).
Among the 65 patients who reported performing some form of exercise, 47 (72.3%) reported a disability score of 5 or less on the 10-point scale (
Figure 2).
The primary limitation to the present study is the small patient population. Another limitation is that all of the survey participants were patients at a single facility. Therefore, the results may lack external validity. Further investigations on this matter should include patients from multiple geographic areas to increase the patient population and, thus, the validity of findings.
Because the survey was anonymous, we cannot be sure that the patients met the inclusion criteria. In addition, our survey did not question patients about their motivation for using nonmedical therapies, or about which OMT techniques they used. Therefore, we cannot ascertain patients' reasoning with respect to the effectiveness of these therapies in preventing disease progression or managing symptoms.
“Bridging” treatments that combine alternative therapies with conventional disease-modifying treatment modalities are currently recommended by a number of European multiple
sclerosis societies.
33,53 However, a positive correlation between use of non-DMA therapies alone and decreased disability could not be observed in our study because all of our study population used such therapies.
Finally, patients' reported perceptions of disability on a 10-point scale were a subjective measurement. Future studies should incorporate objective measures of multiple sclerosis–related disability.