A review of complementary and alternative medicine (CAM) by people with multiple sclerosis

Transcription

1 OCCUPATIONAL THERAPY INTERNATIONAL Published online in Wiley InterScience ( A review of complementary and alternative medicine (CAM) by people with multiple sclerosis SHERRI A. OLSEN, MultiCare Health Systems, 315 Martin Luther King Jr. Way, Tacoma, WA ABSTRACT: Multiple sclerosis (MS) is a chronic, unpredictable disease of the central nervous system without a known cure. Because of this, people with MS often seek complementary and alternative medicines (CAM) to manage their disease symptoms. The goal of this review article was to describe the use of CAM by individuals diagnosed with MS. Evidence was obtained by searching Medline ( ), EBSCOhost and PubMed for studies relating CAM to MS. Results from the literature showed that people with MS reported that they used CAM from 27 to 100%. The major reasons for choosing CAM were as follows: conventional treatment was not effective, anecdotal reports of CAM s help, and doctor referral. The types of CAM reported by people with MS included exercise, vitamins, herbal and mineral supplements, relaxation techniques, acupuncture, cannabis and massage. The major symptoms treated by CAM as noted in the literature were pain, fatigue and stress. There is a need for further research to evaluate the effectiveness of CAM with MS patients and their application by occupational therapists. The limitation of this literature review was the low response rate in many of the surveys reported.. Key words: complementary alternative therapies, multiple sclerosis Introduction Multiple sclerosis (MS) is a chronic, unpredictable neurological disease that affects the central nervous system and has no known cure (National Multiple Sclerosis Society, 2006). Individuals with MS experience a variety of symptoms that may include motor, sensory and cognitive functioning. Specifically these symptoms may include speech and swallowing problems, tremors, spasticity, visual and cognitive problems, fatigue, pain or bowel and bladder problems (Shinto et al., 2008). Although most people with MS have a normal or

2 58 Olsen near-normal life expectancy, quality of life is often affected by disease related changes in function (Stuifbergen and Harrison, 2003). Disease modifying drugs may be taken to reduce the frequency of exacerbations and have a beneficial effect on the severity of the disease and reduce the progression of disability (Goodin et al., 2002). However, these drugs do little to treat the symptoms, improve functioning or enhance quality of life. Because of this, people with MS may seek different methods to treat their MS symptoms (Freeman et al., 2001). A systematic review of randomized controlled trials (RCTs) found that there are very few controlled clinical studies assessing the efficacy of CAM therapies for the treatment of MS symptoms (Huntley and Ernst, 2000). The RCTs were small studies in the areas of nutrition, massage, bodywork and magnetic field therapy. The fi ndings indicate that these therapies may provide beneficial effects for some symptoms of MS, but these studies are limited by small sample sizes and lack of methodological rigor (Millar et al., 1973; Bates et al., 1978; Paty et al., 1983; Bates et al., 1989; Nielson et al., 1996; Richards et al., 1997; Siev- Ner et al., 1997; Hernandez-Reif et al., 1998; Gibson and Gibson, 1999; Johnson et al., 1999). The goal of this literature review was to describe how frequently CAM is being used by individuals with MS, explore why CAM is chosen, defi ne how effective CAM is perceived by users, defi ne what symptoms are most often treated, and which CAM therapies are most frequently used. Evidence was obtained by searching Ovid Medline ( ) ( EBSCOhost ( and PubMed ( nih.gov). The search terms used were multiple sclerosis AND alternative medicine, multiple sclerosis AND complementary alternative medicine (CAM), alternative AND complementary therapy, bee venom AND multiple sclerosis. The reference lists of articles were also reviewed for relevant publications. Frequency of CAM use Seminal research done by Pleines (1992) with MS patients in Quebec surveyed 112 individuals. The research found 64.3% of respondents had used some form of alternative medicine. In two exploratory studies in the United States, Fawcett et al. (1994, 1996) surveyed 16 MS patients in each study. The results of each study found 100% use of at least one alternative health therapy. A 5-year longitudinal study done by Stenager et al. (1995) of 49 MS patients in Denmark investigated the use of CAM therapy at the start and at the end of a 5-year period. The use of CAM therapy at the start was reported at 55% and at the end CAM use was reported at 27%. In a survey of 240 MS patients in California and Massachusetts, Berkman et al. (1999) found that 58% of the patients had used alternative treatments. Ninety per cent of the patients using a CAM treatment used it as a complement to their conventional treatment. A survey of 569 MS patients in Colorado done by Schwartz et al. (1999) found 33% of those

3 Use of complementary medicine with multiple sclerosis 59 surveyed had visited a provider of CAM in the last 6 months. The results showed that individuals seeing a primary care doctor only reported a 34% CAM usage; individuals seeing a single specialty doctor (i.e. neurologist) reported a 38% CAM usage; and individuals receiving comprehensive care reported a 53% CAM usage. In a nationwide US survey of 3,140 MS patients, Nayak et al. (2003) found that 57.1% of MS patients had used one CAM; 70.2% of those individuals had used three or more CAM therapies, for an average of 5.02 CAMs. In a 3-year longitudinal study of 621 MS patients in the southwest US, Stuifbergen and Harrison (2003) surveyed participants regarding 12 CAM therapies. Results indicated 33% currently used 1 of 12 CAM therapies and 50% had tried a CAM therapy in the past. Apel et al. (2006) examined the frequency of use of 254 MS patients at two neurology clinics in Germany. Their fi ndings suggested 67.3% of individuals were currently using a CAM, for an average of 2.7 therapies. Of those individuals using CAM, 90.6% use it as a complement to conventional therapy and 9.4% use it as an alternate. Another study in Germany with 154 MS neurology patients found 61.7% of the patients were currently using CAM, averaging 2.4 therapies (Apel et al., 2005). Of those individuals using CAM, 90.3% use the therapy as a complement and 9.7% as an alternative to conventional treatment. In a survey of 1,667 MS patients in Oregon and Washington, Shinto et al. (2006) reported CAM use as 87.9% have ever used, 71.1% currently use, 16.9% have used in past and 12.1% have never used. Finally, Campbell et al. (2006) explored CAM use in 451 veterans. Thirty-seven per cent of the respondents reported current or past CAM use. Thirty-three per cent reported using two or more interventions. (Refer to Table 1 for summary of frequency data and response rates.) There is some evidence that physicians are not aware of the full extent of their patients use of CAM. For example, a survey of 150 primary care physicians in the United States, completed by Giveon et al. (2003), found that 68% of the physicians estimated that up to 15% of their patients use CAM. Fifty-three per cent of the physicians estimate that up to 15% of their patients use herbs. Fiftyper cent of the physicians surveyed estimated that 10% of their patients report use of herbal remedies. Eisenberg et al. (1993, 1998, 2001) reported that in the general population, 39.8 and 38.5% of patients, respectively, discussed CAM therapies with their conventional medical doctor (M.D.). Why CAM is chosen There is reference throughout the literature that individuals may turn to CAM therapies because of dissatisfaction with conventional medicine (Giveon et al., 2003). Although, in a national qualitative study of 100 US military veteran CAM users, Kroesen et al. (2002) suggest that although there were particular aspects of the conventional care system that were criticized, dissatisfaction is

4 60 Olsen TABLE 1: Complementary and alternative medicine (CAM) use frequency Citation CAM use (%) Response rate (%) Achieved sample Total sample Pleines Fawcett et al. 1994, Stenager et al Start 55 End Schwartz et al care dr specialty care dr. 38 Comprehensive care 53 Berkman et al Schwartz et al Nayak ,140 11,600 Stuifbergen and 33; 1 of 12 50; tried CAM in Harrison 2003 the past Apel et al Apel et al Shinto et al ; ever used 71.1; currently 32 1, use 16.9; used in past 12.1; never used Campbell et al ; currently use 33; use 2 or more not a major factor. For example, results suggested a desire for more holistic care. Participants specifically referred to conventional medicines inadequate information regarding diet, nutrition and exercise, as well as ignorance of spiritual dimensions as a reason to turn to CAM. Results also suggested dissatisfaction with conventional medicines reliance on prescription medications as an important component in veterans motivation to use CAM. Instead of fi nding the choice of CAM being due to dissatisfaction, Astin (1998) found the choice of CAM alternatives being due to having more congruency with the values, beliefs and philosophical orientations of life and health: a holistic perspective. For individuals with MS, conventional medicine does not treat many of the symptoms and offers no cure (Freeman et al., 2001). Fawcett et al. (1994) reported that 63% of the individuals in the United States with MS reported seeking CAM because conventional medicine offered no cure for MS. Anecdotal evidence, or hearing about another person s success, was the reason given for choosing CAM therapy by 68% of the respondents in the Berkman et al. (1999) article. Other reasons for choosing CAM included; traditional treatment did not bring symptom relief (56.4%), traditional treatment offered no cure for MS (54.5%), condition was worsening and CAM was only hope (47.5%), a friend persuaded me (39.6%) and my doctor recommended it (37.6%). The holistic nature of CAM was the reason it was chosen by 63.4% of US respondents in a

5 Use of complementary medicine with multiple sclerosis 61 TABLE 2: Reasons for choosing complementary and alternative medicine (CAM) Citation Reason for choosing CAM Response (%) Fawcett et al Conventional medicine offers no cure 63 Berkman et al Anecdotal evidence 68 Traditional treatment offers no cure 54.5 Traditional treatment offers no 56.4 symptom relief Condition worsening 47.5 Persuaded by friend 39.6 Doctor recommended 37.6 Nayak et al Holistic nature 63.4 Conventional healthcare not effective 51 More control 36.7 Doctor recommended 15.3 Page et al Information from media 50 Family/friends 50 TABLE 3: Why complementary and alternative medicine (CAM) therapy is not chosen at all Reason given for not using CAM % (Absolute number) Never considered CAM as an option 26.8 (361) Unable to afford CAM 25.1 (338) Satisfied with conventional treatment 21.7 (292) Do not believe CAM treatments work 13.3 (179) My physician advised me against CAM 7.9 (106) survey done by Nayak et al. (2003). Fifty-one per cent felt that conventional healthcare had not been effective; more control over their own healthcare was the reason stated by 36.7% of respondents. Only 15.3% in Nayak s study indicated their physician recommended CAM treatment. CAM therapies were chosen based on information from the media (50%), or family/friends (50%), based on responses from individuals in a Canadian survey done by Page et al. (2003). See Table 2 for summary of statistics for reasons CAM is chosen. Reasons for not using or stopping CAM Nayak et al. (2003) also sought to fi nd out the reasons why their subjects did not use CAM. Table 3 shows the results of the Nayak survey of why CAM is not chosen. There were five reasons given with a total of 1,348 respondents. There were no correlations done as to who would be more or less likely to choose

6 62 Olsen CAM. Page et al. (2003) found in their research that lack of knowledge about CAM therapies (42%) and satisfaction with current care provider were reasons for not using CAM. CAM effectiveness The perceived effectiveness of CAM therapies is reported inconsistently and with different reporting methods in the literature. Pleines (1992) reported a range of responses making mention of improvement ( %) and those making mention of no improvement ( %). Although in the case of relaxation, 80% reported improvement in well-being and/or decrease in stress. Specific CAM therapies, percentage used and perceived efficacy for each CAM were provided by Nayak et al. (2003). There appeared to be no relationship between frequency (percentage using) and reported effectiveness of CAM use. A scale of 1 5 was used to measure effectiveness with 5 being most effective. Prayer was the most frequently used, but had a perceived efficacy of 1.12 [standard deviation (SD) 1.12]. Others include ingested herbs 26.6%, effectiveness 2.88 (SD 1.56), vitamins 44.8%, efficacy 3.34 (SD 1.39), chiropractic 25.5%, efficacy (3.06) (SD 1.66), and acupuncture 19.9% and efficacy (2.37) (SD 1.76). Page et al. (2003) reported 72% of their respondents perceived positive effects, whereas 5% reported experiencing negative effects from CAM. The most often cited beneficial therapies were massage therapy, acupuncture and cannabis. In the 3-year longitudinal study completed in the United States by Stuifbergen and Harrison (2003), a list of 12 CAM therapies were measured for perceived effectiveness as well as whether the person was using the therapy at the completion of the study. With the exception of nutritional supplements, less than half of the people who had tried any of the listed CAM treatments continued to use them, even though the majority reported that they had found therapeutic touch, yoga, herbal treatment, chiropractic treatment, special diets, massage and nutritional supplements helpful (53 77%). Perceived benefits were reported 61.5% of the time by Pucci et al. (2004) in Italy. In a 5-year follow-up study in Denmark, completed by Stenager et al. (1995), only one patient out of 13 reported a positive effect of a CAM at the start and end of the observation period. The authors did not provide details on the measurement used for the patients to report positive effects. In another study, respondents perceived conventional providers and therapies as being significantly more beneficial than CAM providers and therapies (p < 0.001) (Shinto et al., 2005). Of the CAM therapies listed by Apel et al. (2005), 65.8% of the MS patients reported improvements, 32.9% reported no influence and 1.3% worsening of their condition. Slight side effects were reported for 4.5% of the CAM therapies, including physiotherapy, massage, traditional Chinese medicine and cannabis. In another study by Apel et al. (2006), improvement was reported by 67.1%, no improvement was reported by 32.3% and worsening of conditions was reported by 0.6%

7 Use of complementary medicine with multiple sclerosis 63 of the patients. Minor side effects were reported for 3.7 of the CAM therapies, including; exercise, vitamins, relaxation, massage, traditional Chinese medicine, hippotherapy, magnetic field therapy, cannabis and enzyme therapy. In a randomized pilot study of naturopathic medicine in individuals with MS, Shinto et al. (2008) investigated the quality of life impact of naturopathic intervention using a three-arm, parallel-group, randomized clinical trial. Fortyfive subjects were randomized to either (1) naturopathic treatments plus usual care; (2) usual care alone or (3) MS focused educational visits with a nurse plus usual care. The intervention period was 6 months. On the primary outcome measure of quality of life there was no significant difference between groups. There were also no significant differences between groups for the secondary outcome measures of fatigue, depression, disability and cognitive impairment. Symptoms treated Numbness, weakness and vision were the primary symptoms reported as being treated by the patients in the study by Fawcett et al. (1996). In the Berkman et al. (1999) study, benefits mentioned included less fatigue, more energy/strength, overall good health, stress relief, pain relief, improved memory, less numbness, better bowel and bladder control, less spasticity and depression relief. Slowing of progression or facilitation of a remission as the reason for CAM use was mentioned only 12.1% of the time. Page et al. (2003) reported that 68% of their patients use CAM to improve their health and 61% use CAM to manage symptoms; specific symptoms were not provided. Nayak et al. (2003) found that CAM was primarily used for symptom relief (73.9%), slowing of progression (52.2%), relapse prevention (33.6%) and induced remission (26.7%). The most frequently listed symptoms that were treated include, all MS symptoms (86.6%), pain (59.5%), fatigue 57.8%) and stress (37.9%). Pucci et al. (2004) reported 66% of the 61 CAM interventions used by the patients in their study were for the treatment of symptoms; the other 34 were disease modifying. CAM treatments used Being aware of the various reporting methods used in the literature is important when analyzing and comparing data. For example, Fawcett et al. (1994, 1996) and Apel et al. (2006) provided participants an open-ended questionnaire about therapies received for MS; whereas in the Berkman et al. (1999); Page et al. (2003); and Stueifbergen and Harrison (2003) studies, participants were presented with a fi xed list of options to choose from. Another example of differences in reporting methods among studies is the timeframe when the CAM was used by the participant. For example, Astin (1998), Eisenberg et al. (1998) and Barnes et al. (2004)used the past 12 months as the timeframe; whereas others

8 64 Olsen use current and/or lifetime as the timeframe for CAM use (Nayak, et al. 2003; Stuifbergen and Harrison 2003; Shinto et al. 2006). Vitamins and diets (40%), acupuncture (35.4%), Shaklee natural nutritional products (29.9%), and chiropractic and relaxation (23%) were the favoured CAM used by the patients in the research done by Pleines (1992). Although a per cent is not given, Pleines does report that in the majority of cases, there was no medical supervision of the CAM. When the data from the Fawcett et al. (1994, 1996) studies was combined, the most frequently used CAM therapies were physical therapy (44%), nutrition counselling, massage and psychological therapy counselling (38%). Thirty-one per cent of the combined sample used homeopathy, acupuncture or dental therapy. The study by Schwartz et al. (1999) examined the use of CAM providers rather than the use of CAM products without guidance from a provider. The therapies received in the last 6 months include massage (14%), chiropractic (12%), nutritional (9%), holistic (6%), herbal, healing touch, and acupuncture (3%), faith healing (1%) and bee sting (0.2%). Berkman et al. (1999) reported on the past or current use from a comprehensive list of specific CAM treatments. No time frame was attached to the past use. The CAM therapies used were reported as massage (33.6%), chiropractic (29.3%), vitamin C (29.3%), acupuncture (27.9%), meditation (22.9%), vitamin E (22.9%), visualization (22.1%), yoga (16.4%), homeopathy (12.1%), vitamin B complex (12.1%), marijuana (10.7%), and calcium/magnesium and other B vitamins (8.6%). The other 29 CAM treatments listed were used by 5% of the respondents who had ever used a CAM. The respondents of the Somerset et al. (2001) study reported on the use of self-treatments in the previous 12 months. Use was reported as evening primrose oil (47%), multivitamins (37%), special diets (18%) and cannabis (8%). Hanyu et al. (2002) analyzed data from the 1999 National Health Interview Survey, which collected data on CAM use in the past 12 months. The three most commonly used therapies were spiritual healing/prayer (13.7%), herbal medicine (9.6%) and chiropractic therapies (7.6%). In Stuifbergen and Harrison s (2003) 3-year longitudinal study, nutritional supplements, massage, special diets, chiropractic treatment and herbal treatment were the most frequently used CAMs. The current use (at the end of the 3-year study) for each of these therapies was reported as; nutritional supplements (60.5%), massage (20.8%), special diets (45.4%), chiropractic treatment (22.9%) and herbal treatment (49.1%). There was no significant correlation between continued use after 3 years and perceived effectiveness. Table 4 shows the results of the research by Apel et al. (2006). There is a breakdown between complementary and alternative use, and the subjective therapeutic effects of the top six currently used CAM therapies reported by the patients in the study. These results also show no significant correlation between specific CAM use and perceived effectiveness.

9 Use of complementary medicine with multiple sclerosis 65 TABLE 4: Types of complementary and alternative medicine (CAM) use and perceived effectiveness Therapy Absolute number (%) Alternative use (%) Complementary use (%) Improvement (%) Constant/no effect (%) Exercise therapy 126 (27.0) 9 (7.1%) 117 (92.3) 97 (76.4) 29 (22.8) Vitamins 68 (14.6) 10 (14.7) 58 (85.3) 27 (40.9) 39 (59.1) Mineral and other supplements Phytotherapy (herbal therapy) Relaxation techniques 58 (12.4) 2 (3.4) 56 (96.6) 30 (52.6) 27 (47.4) 43 (9.2) 3 (7.0) 40 (93.0) 26 (63.4) 15 (33.6) 42 (9.0) 4 (9.5) 38 (90.5) 38 (86.4) 6 (13.6) Massage 23 (4.9) 3 (13.0) 20 (87.0) 19 (82.6) 4 (17.4)

10 66 Olsen Discussion The use of CAM by the general public has increased steadily since the 1950s and the evidence suggests this trend will continue in the foreseeable future (Kessler et al., 2001). The fi ndings of this research indicate the use of CAM by individuals with MS tends to be slightly higher than in the general public. CAM usage among the chronically ill tends to be higher than in the general population (Berkman et al., 1999; Page et al., 2003). It becomes more of a risk to MS patients, because as the prevalence of CAM usage continues to increase, it is occurring with a lack of strong evidence to support the effectiveness of the treatments. Even with the absence of controlled research, there remains limited relationship between the frequency of use and reported perceived effectiveness of CAM use. In a review of randomized controlled trials, Huntley (2006) found the research lacked strong methodology, including small sample sizes and there being only one or two trials done for each of the treatment approaches. This increases the risk of type II error and makes it difficult to generalize the fi ndings to the larger MS population. A potential weakness of this literature review is selection bias because of the relatively low response rates of most of the studies, which threatens the internal (rigor of the study) and external (generalizability) validity of the fi ndi ngs. Mo st of the studies recruited subjects from MS chapters. This decreases the ability to generalize to the larger population of people with MS. Many of the studies also have small sample sizes. Limitations of the review also resulted because of recognized problems comparing the results of utilization surveys. In particular, there are differing defi nitions used in the surveys for CAM. Specifically, some surveys list the CAM therapies for the individual to choose from, while others have open-ended questions, allowing the individual to fill in the CAM(s) he uses. There are also differences in the time periods of use referred to in the surveys (e.g. current vs. used in last 6 months vs. lifetime use vs. past use). These differences contribute to considerable variation in the prevalence of use reported. Other patterns emerging from the literature review include the use of CAM therapies as a complement to conventional medicine (National Center for Health Statistics, 2008). Individuals do not tend to give up their conventional healthcare providers in lieu of CAM treatment (Berkman et al., 1999; Apel et al., 2006). The trend is to use CAM as an adjunct to the treatment being received from a conventional M.D. Another pattern that emerged was the use of CAM to treat or manage MS symptoms. Although a small percentage of patients do seek CAM for disease modifying purposes, significantly more patients use CAM to treat or manage the daily symptoms (Nayak et al., 2003; Page et al., 2003; Barnes et al., 2004; Pucci et al., 2004). In the surveys reviewed, the most frequently used CAM therapies include; massage, acupuncture, chiropractic, vitamins/herbs and nutrition.

11 Use of complementary medicine with multiple sclerosis 67 Implications for occupational therapy (OT) practitioners Knowledge about the prevalence of use and CAM treatments being used is valuable to OT practitioners, not only for interactions with their MS clients, but also for all clients. The topic of CAM is pertinent to the Occupational Therapy Practice Framework (American Occupational Therapy Association, 2002). Communication about CAM use is initiated as part of the occupational profile (American Occupational Therapy Association, 2002). Use of a clientcentred approach is used to gather information about what is important and meaningful to the client. This will include priorities about health and wellness, prevention and quality of life. While it is impractical to expect OT practitioners to be knowledgeable about all forms of CAM, the principles of evidence-based medicine can be applied to CAM as in any other area of practice. The knowledge gained from this literature review and further research can help OT practitioners in their consulting role, collaborating with and assisting MS clients to make educated decisions about various types of healthcare. The knowledge can also help OT practitioners who may use CAM as part of their treatment program. This may include, but is not limited to, yoga or relaxation. In addition, the information from the occupational profile provides the OT practitioner with information about their client s interests, values, needs and perspectives. Knowing how the client perceives his or her illness will assist the OT practitioner to empower the client with the skills needed to feel comfortable discussing their healthcare priorities, including prior, current or future CAM use, with their M.D. Acknowledgement The author wishes to thank Martha Hartgraves, PhD, OTR/L, CLT, OT Graduate Program Director at Rocky Mountain University of Health Professions, Provo, Utah, for her assistance with this project while she was a doctoral student at the university. References American Occupational Therapy Association (2002). Occupational therapy practice framework: domain and process. American Journal of Occupational Therapy 56: Apel A, Greim B, Konig K, Zettle U (2006). Frequency of current utilization of complementary and alternative medicine by patients with multiple sclerosis. Journal of Neurology 253: Apel A, Greim B, Zettl U (2005). How frequently do patients with MS use complementary alternative medicine? Complementary Therapies in Medicine 13(4): Astin JA (1998). Why patients use alternative medicine: results of a national study. The Journal of the American Medical Association 279: Barnes PM, Powell-Griner E, McFann K, Nahin R (2004). Complementary and alternative medicine among adults: United States, Advance Data From Vital and Health Statistics 343: (Available at (Accessed 18 January 2008).

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14 70 Olsen Stuifbergen AK, Harrison TC (2003). Complementary and alternative therapy use in persons with multiple sclerosis. Rehabilitation Nursing 28: , 158. Address correspondence to Sherri A. Olsen, th St. E., Lake Tapps, WA 98391, USA (