Perception and Use of Complementary and Alternative Medicine Among Patients With Epilepsy

Epilepsy ranks among the most common chronic neurological disorders and perhaps fifty million worldwide are living with it. The mainstay of treatment is drug therapy. In the past decade, many new antiepileptic drugs (AEDs) have been introduced, so that there are now more than 20 medications available to treat epilepsy (1). However, about one-third of individuals with epilepsy have persistent seizures despite using appropriate AEDs (2). Once two drugs have failed, other treatment options should be considered (3). Complementary and alternative medicine (CAM) is defined as ‘‘those healthcare and medical practices not currently an integral part of conventional medicine’’ (4). It is estimated that more than 40% of population in most western countries use CAM for various health conditions (5). Research into the use of complementary and alternative medicine in epilepsy is ongoing.

The aim of the current study was to assess the extent to which patients use CAM treatments for epilepsy and to assess the perceptions of CAM by patients in south Iran and compare it to the patients in north Iran, to find a general idea of people’s perceptions and use of CAM for epilepsy in Iran.

In this cross-sectional study, patients treated for epilepsy for at least one year were recruited at two epilepsy centers in Iran: the outpatient epilepsy clinic at Shiraz University of Medical Sciences, which is the only epilepsy clinic in south Iran; and a major neurology clinic in Tehran, which is the capital of Iran located in the north of the country, from November 2011 through April 2012. All patients had access to healthcare facilities and could afford standard medication. The diagnosis of epilepsy was made based on the clinical grounds and EEG findings. Patients and/or their care-givers who were physically able to speak, hear, and read were eligible to participate in the study. A survey was designed for this study (Appendix 1). The survey collected some demographic data on the person who was filling it (either the patients or their care-givers), some demographic and clinical data about the patients, and also specific information about CAM perceptions and usage (whether they used various types of CAM; and if they believed CAM was effective to treat seizures). If they had used CAM in the past, they were asked questions regarding the types of CAM they used, its duration, the perceived effectiveness of CAM treatment compared to their AEDs, and finally, their reasons for using CAM. If they did not use CAM in the past, they were asked questions regarding their reasons for not using CAM.

This study was conducted with the approval of Shiraz University of Medical Sciences Review Board. The patients were informed about the study and if agreed, participated. All independent variables were correlated with the dependent variables: the perception about CAM and the presence or absence of CAM use. The Pearson Chi-square test and Student’s t-test were used for univariate analyses. Subsequently, multivariate analysis using logistic regression was performed on variables that were significant (P < 0.05) in univariate analysis (if they were three or more).

Three hundred and twenty-three patients and/or their care-givers in Shiraz and 227 people in Tehran participated in this study. The characteristics of the participants are summarized in Table 1.

One hundred and thirty-nine patients in Shiraz and 116 people in Tehran thought that at least one of the items questioned might be helpful to treat seizures and answered “YES” to at least one question (Table 2). Comparisons of the people who said “YES” to any question with the others did not show any significant differences regarding the sex ratio (P = 0.2), education (P = 0.09), degree of seizure control (P = 0.1), duration of the disease (P = 0.1), age of the patient (P = 0.2), and having comorbidity (P = 0.4). The only significant difference was the age of the interviewees (who filled the form); it was 31 ± 11 years in people who said “YES”, and 33 ± 11 years in the others (P = 0.03) (While statistically different, it seems not biologically different). Therefore, we did not do multivariate analysis (logistic regression) in these patients. Complementary and alternative medicine usage among patients with epilepsy in Shiraz and Tehran is shown in Table 3.

Regarding the usage of CAM to treat seizures, gender of the interviewees (P = 0.1), degree of seizure control (P = 0.4), the patient’s age (P = 0.2), and duration of the illness (P = 0.1) were not different between patients who used CAM and those who did not. However, education of the interviewee (P = 0.007), age of the interviewee (36 ± 14 in those who used CAM vs. 31 ± 11 in those who did not; P = 0.03), and having comorbidity (P = 0.03) were different among these two groups. Educational level in the group who used CAM to treat their seizures was high school (10 years of education or less) in 31 (41%), diploma (11or12 years of education) in 12 (16%), and university in 32 (43%) participants, while these figures in those who did not use CAM were 151 (32%), 158 (33%), and 153 (32%), consecutively (13 patients did not answer to this question). Direct logistic regression was performed to assess the impact of these factors on the likelihood that patients use CAM to treat their seizures. The model contained three independent variables (age of the interviewee, educational level of the interviewee, and having comorbidity in the patient). The full model containing all predictors was statistically significant (X2 = 21.7; P = 0.0001), indicating that the model was able to distinguish between CAM users and the others. The model correctly classified 86% of the interviewees. Within the model the following results were observed: high school educational level (P = 0.008, Odd’s Ratio = 2.6, 95% Confidence Interval = 1.3 - 5.3), university educational level (P = 0.006, Odd’s Ratio = 2.7, 95% Confidence Interval = 1.3 - 5.5), age of the interviewee (P = 0.005, Odd’s Ratio = 1.03, 95% Confidence Interval = 1.009 - 1.05), and having comorbidity (P = 0.2, Odd’s Ratio = 1.4, 95% Confidence Interval = 0.8 - 2.4). None of the patients studied stopped their treatments (antiepileptic drugs) due to use of alternative medicine.

Effectiveness of the CAM used by the patients compared to their AEDs was described as less effective in 22 patients (49%) in Shiraz, and 13 patients (43%) in Tehran; more effective in 13 people (29%) in Shiraz, and 12 (40%) in Tehran; and not different in 10 (22%) in Shiraz, and five (17%) in Tehran; the differences were not significant (P > 0.1 for all comparisons). Duration of using CAM for seizures was less than six months in most patients (in 61% of the patients who used CAM in Shiraz, and in 52% in Tehran); however, some patients used CAM for more than two years. The difference between people in Shiraz and patients in Tehran regarding the duration of using CAM was not significant (P = 0.8). Reasons for using complementary and alternative medicine among patients with epilepsy in Shiraz and Tehran are presented in Table 4, and reasons for not using CAM are given in Table 5.

Epilepsy is a common chronic neurological disorder and more than one-third of patients have persistent seizures despite using appropriate AEDs (2). Once two drugs have failed, other treatment options should be considered (1, 3). Complementary and alternative medicine is an option considered by many people with epilepsy, despite the lack of enough scientific proof for its efficacy in most instances. No randomized, controlled trials have evaluated the efficacy of various CAM treatments for epilepsy. This has been highlighted by several recent reviews on the topic showing the absence of enough evidence to support CAM efficacy, despite the high prevalence of using CAM by patients with epilepsy (5). In our study, 46% of people in Iran thought that at least one of the choices of CAM treatments is effective in treating seizures. People in the north of the country more frequently believed that CAM could be helpful in treating seizures compared to the people in the south. This difference is probably due to cultural issues and differences, as availability of conventional treatments for epilepsy, and economical situation, educational system, race and religion of people are more or less similar between these two areas. About 14% of people in this study used CAM treatment(s) with the hope of treating their seizures. The number of patients who used CAM in Shiraz compared to those in Tehran was not different. Similarly, the reasons as why they used CAM were not different either. However, the CAM methods they applied were different between these two areas; people in Shiraz more often used traditional or herbal medicine to treat their seizures, while patients in Tehran used exorcism or psychic more than any other method. This difference is most probably due to cultural differences, as described above. The most common reasons for not using CAM were lack of enough information, fear of medical interactions, and fear of adverse effects in both areas, despite the differences in their frequencies. The number of patients who used CAM in our study is less than that expected for the people in our region (6), and even compared to other studies (4, 7, 8). This is probably due to cultural differences or different methodologies applied. None of the patients studied stopped their antiepileptic drugs due to use of CAM, but these were the people who were admitted to our clinic, and it does not reflect all patients in general. In answer to the question “Why do individuals use CAM?”, Sirven (5) has mentioned three possible theories: 1) High failure rates of antiepileptic drugs (AEDs) to treat seizures; 2) The comorbidities of epilepsy, some of which are more problematic than the seizures themselves and for which AEDs or other therapies are perceived to be of little help; 3) CAM may be perceived as more natural and less toxic than AEDs. Most probably, all these theories are valid and contribute to the use of CAM by people with epilepsy. We observed that most people used CAM, because they were unhappy with their treatment results with AEDs. However, there are probably more factors involved in making such a decision as to use an unconventional therapy (i.e. CAM) to treat seizures. For example, in our study, high cost of AEDs was considered as an important factor by some patients.

In this study, we could not find a model to predict that CAM is effective in treating seizures. However, we found a model among CAM users. The model correctly classified most of the interviewees. Within this model educational level [having either low education (under secondary school) or on the contrary, high education (university education)] made a significant contribution. People with epilepsy who had either a low education or, on the contrary, those who were highly educated more likely used CAM to treat their seizures. In people with lower education, it is probably related to the fact that patients with epilepsy often have weak perceptions of internal and strong perceptions of external health locus of control, which probably means that patients with epilepsy might adapt less effectively to their illness and have lower levels of engagement in beneficial health behaviors and active coping strategies (9). On the other hand, people with higher education more often have access to available sources of information (e.g., internet), and because they might not be happy with their current conventional therapy with AEDs, they look for other possible alternatives. In a previous study (10), logistic regression analysis revealed that the three factors independently associated with CAM use were male gender (P < 0.05, OR = 2.3, 95% CI = 1.1 - 4.9); higher economic status (P < 0.05, OR = 2.5, 95% CI = 1.2 - 5.0); and the belief that CAM use was safe (P = 0.001, OR = 1.9, 95% CI = 1.3 - 2.9). Gender was not an important factor in our study. We did not study the effects of economic status in our research and we cannot comment on that. We did not look at income. It might influence whether the patients could afford CAM options.

Complementary and alternative medicine is considered and used by many people with epilepsy to treat seizures, despite the lack of enough scientific proof for its efficacy. As a matter of fact, effectiveness of the CAM used by our patients was described as less effective compared to their AEDs, in most people. Cultural issues probably play an important role in having faith in CAM and consequently, use a specific method of CAM to treat seizures. Therefore, informing people with epilepsy about risks of not taking AEDs in the hope of receiving help from an unapproved unconventional method is of paramount importance. However, when asked about CAM treatments by patients, the first recommendation is to keep an open mind. Try to understand the rationale as to why people choose these therapies. Provide available and appropriate information regarding the safety and efficacy of various CAM treatments for epilepsy (5, 11, 12). Some CAM treatments may be potentially useful or at least are not harmful. Yoga, exercise, and stress management techniques are of potential benefit and are not harmful. Others are a clear danger (5, 13, 14). Further well-designed studies are required to investigate the precise role of various CAM treatment options in people with epilepsy. Similarly, further investigation is necessary to clarify all the factors involved in making the perceptions of CAM by people with epilepsy and the rationale as to why they choose these therapies.