Epilepsy & Behavior 22 (2011) 308–312

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Epilepsy & Behavior

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Treatment-seeking behavior of people with epilepsy in Taiwan: A preliminary study

Yi-Chun Kuan a,b, Der-Jen Yen a, Chun-Hing Yiu a, Yung-Yung Lin a, Shoen-Yoeng Kwan a, Chien Chen a,Chien-Chen Chou a, Hsiang-Yu Yu a,⁎a Department of Neurology, Neurological Institute, Taipei Veterans General Hospital and National Yan-Ming University, Taipei, Taiwanb Department of Neurology, Shuang-Ho Hospital and Taipei Medical University, Taipei, Taiwan

⁎ Corresponding author at: Department of NeurolHospital, No. 201, Sec. 2 Shih-Pai Road, Taipei, Taiwan.

E-mail address: hyyu@vghtpe.gov.tw (H.-Y. Yu).

1525-5050/$ – see front matter © 2011 Elsevier Inc. Aldoi:10.1016/j.yebeh.2011.06.034

a b s t r a c t

a r t i c l e i n f o

Article history:Received 14 June 2011Revised 26 June 2011Accepted 28 June 2011Available online 2 August 2011

Keywords:EpilepsyComplementary and alternative medicineTreatment seekingTraditional Chinese medicineHerbal medicineTemple worship

To understand the treatment-seeking behavior of people with epilepsy (PWE), 403 PWEwere surveyed usingstructured face-to-face interviews. Nearly half (49.1%) of them had previously tried complementary andalternative medicine (CAM); traditional Chinese medicine (51.5%) and temple worship (48.0%) were themostfrequently used forms of CAM. In the 155 patients with adult-onset epilepsy, seeking CAM was substantiallymore common among females (OR=2.11, 95% CI=1.05–4.24, P=0.036), patients with frequent seizures(OR=2.68, 95% CI=1.30–5.53, P=0.008), patients with less educated parents (OR=2.16, 95% CI=1.06–4.41, P=0.034), and patients with religious beliefs (OR=2.84, 95% CI=1.23-6.56, P=0.015). In the 248patients with childhood-onset epilepsy, frequent seizures (OR=2.23, 95% CI=1.32–3.77, P=0.003) andlower level of parental education (OR=2.71, 95% CI=1.45–5.06, P=0.002) were significantly associatedwith CAM use. The patients who seek CAM before receiving conventional medical treatment decreased afterimplementation of the National Health Insurance (NHI) (34/188 before NHI vs 22/215 after NHI, P=0.023).This study showed that the prevalence of CAM use by PWE in Taiwan is high and that a convenient NHIprogram can affect treatment-seeking behavior.

ogy, Taipei Veterans GeneralFax: +886 2 28757579.

l rights reserved.

© 2011 Elsevier Inc. All rights reserved.

1. Introduction

Epilepsy is a common chronic neurological disorder, but it ismisunderstood in many cultures. Often, people with epilepsy (PWE)are treatedwith prejudice [1]. Such inadequate awareness and negativeattitudes may impede PWE from seeking the correct diagnosis andappropriate treatment. Economic considerations and national medicalpolicies also play important roles in the treatment-seeking behavior ofPWE [2]. Most PWE choose to visit a physician for conventionalmedicaltreatment (CMT) and take antiepileptic drugs (AEDs) after discussingtheir medical histories, physical and neurological examinations,and laboratory diagnostic workups with their health care providers.However, they might also seek complementary and alternativemedicine (CAM). CAM use by PWE has been investigated in variouscountries [3–8]. Studies regarding CAM use in Taiwan have beenperformed in the general population and in people with nonneurolo-gical disorders such as type 2 diabetes [9], depression [10], and cancer[11]. However, there is no study in the Taiwanese literature focusingon PWE.

Taiwan implemented the National Health Insurance (NHI) systemin March 1995, and more than 99% of the population (23 million) hadjoined this program by June 2003. More than 55% of PWE who used

the NHI systemwent to the 23medical centers in our country; only 7%went to private practice clinics. The NHI covers most approved AEDsand a few traditional Chinese medicines [12]. The purpose of thisstudy was to investigate the treatment-seeking behavior of PWE inTaiwan (including factors associated with CAM use) and the influenceof the NHI program on treatment-seeking behavior.

2. Materials and methods

This study was conducted by performing structured face-to-faceinterviews with PWE in Taipei Veterans General Hospital, the largestmedical center in Taiwan, between June 2008 and December 2008.All patients had been diagnosed with epilepsy by board-certifiedneurologists. This survey was approved by the institutional reviewboard of the hospital, and all participants signed the consent forms.

Subjects between the ages of 6 and 85were included. For children orpatients withmental retardation or severe neurological deficits, parentsor caregivers helped to complete the questionnaires. The questionnaireelicited the patients’ socioeconomic background (gender, birth date,patient and parental education, birthplace, residential area, averageannual household income, religion, jobs, marital status, and familystatus), history of epilepsy (age at onset and average seizure frequency),treatment-seeking behavior (duration between first seizure andfirst visit a physician, regardless of whether CAM was sought before orafter receiving CMT), current treatment, and influence of the NHIprogramon their illness. For patientswhohad previously used CAM, the

Table 1Demographic and seizure-related characteristics of the participants.

All subjects(N=403)

Subjects who previouslyused CAMa (N=198)

Male/female 206/197 (51.1%/48.9%)b 92/106 (46.5%/53.5%)Age 33.1 (13.6)b 34.6 (13.6)Age at onset 17.8 (12.7) 17.4 (12.0)Birthplace (Taipei) 216 (53.6%) 97 (49.0%)Residential area (Taipei) 260 (64.5%) 121 (61.1%)First visit to CMT within1 week of seizure onset

211 (52.4%) 97 (49.0%)

Average annual householdincome N20,000 USDc

193 (47.9%) 84 (42.4%)

Parental education(≤6 years)

152 (37.7%) 92 (46.5%)

Patient education (≤6 years) 38 (9.4%) 24 (12.1%)Religion (yes) 298 (73.9%) 165 (83.3%)Employed 190(47.1%) 86 (43.4%)

a CAM, complementary and alternative medicine; CMT, conventional medicaltreatment.

b Data are expressed as numbers (percentages) or means (SD).c 20,000 USD (US dollars) is approximately 600,000 NTD (New Taiwan dollars)

(March 2011).

309Y.-C. Kuan et al. / Epilepsy & Behavior 22 (2011) 308–312

period, patterns, cost, effectiveness, and adverse effects of CAM werealso recorded.

In this study, CMT was defined as a medical or surgical treatmentin accordance with the treatment guidelines of the InternationalLeague Against Epilepsy (ILAE) [13], and CAM was defined as a groupof diverse medical and health care systems, practices, and productsother than those used in CMT. We classified the forms of CAM asfollows: over-the-counter medications, traditional Chinese medicineincluding acupuncture (prescribed or performed by a certificatedtraditional Chinese doctor), botanicals and herbal remedies notprescribed by a doctor, temple worship, prayers, and Qigong.

To alleviate any concerns regarding a potential negative impact onthe patient–physician relationship, the individual results of thissurvey were not reported to the attending physicians.

To analyze the factors associatedwith CAMuse, we categorized thepatients into those with adult-onset epilepsy and those withchildhood-onset epilepsy (by the age of 18, which is the age of civilmajority in Taiwan). Both persons who had graduated and those whohad not graduated from elementary school (≤6 years) were classifiedas having low education, as elementary school does not include thestudy of English. To investigate the influence of patients’ finances ontreatment-seeking behavior, we categorized patients with respect tothe average annual household income of Taiwan, 600,000 NewTaiwandollars (NTD), which is approximately 20,000 US dollars (USD).

Table 2Variables related to seeking complementary and alternative treatment.

Adult onset (N=155)

Ever CAMa (N=72) Never CAM

Male/female ratio 31/41 (43.1%/56.9%)b 52/31 (62.Average seizure frequency (≥1/month) 36 (50.0%) 21 (25.Duration of epilepsy (years) 12.1 (10.5)b 9.4 (9.4Seizure type (loss of consciousness) 65 (90.3%) 71 (85.Birthplace (Taipei) 31 (43.1%) 44 (53.Residential area (Taipei) 46 (63.9%) 60 (72.First visit to CMT within 1 week of seizure onset 33 (45.8%) 51 (61.Average annual household income N20,000 USDc 40 (55.6%) 40 (48.Parental education (≤6 years) 49 (68.1%) 41 (49.Patient education (≤6 years) 11 (15.3%) 2 (2.4Religion (yes) 61 (84.7%) 53 (63.Employed 39 (54.2%) 52 (62.

a CAM, complementary and alternative medicine; CMT, conventional medical treatment.b The data are expressed as numbers (percentages) or means (standard deviations).c 20,000 USD (US dollars) is approximately 600,000 NTD (New Taiwan dollars) (March 2

The data were analyzed using SPSS statistical software (Version18). χ2 tests and t tests were used for univariate analyses, and logisticregression was used for the subsequent multivariate analyses. AP value b0.05 was considered significant.

3. Results

3.1. General characteristics and treatment-seeking behavior of peoplewith epilepsy

The demographic and seizure-related characteristics of the 403patients in the study are summarized in Table 1. Of the 403participants, 211 (54%) patients visited a physician within 1 week ofthe first seizure, and 72 (17.9%) delayed the visit for more than6 months after the first seizure. In total, 198 (49.1%) patients hadpreviously used CAM, 142 (35.2%) had tried CAM after receiving CMT,28 (6.9%) had sought CAM before receiving CMT, and 28 (6.9%) usedCAM both before and after receiving CMT. At the time of the survey,340 (84.4%) patients were taking AEDs, 60 (14.9%) were using bothCAM and AEDs concomitantly, and 3 (0.7%) were using only CAM. Inother words, 63 of the 198 patients (31.8%) who had ever used CAMwere currently using CAM.

3.2. Factors related to use of complementary and alternative medicine

The univariate analyses of variables related to CAM use amongpatients with adult- or childhood-onset epilepsy are summarized inTable 2. A multivariate logistic regression analysis demonstrated thatCAM-seeking behavior was substantially more common in females(OR=2.11, 95% CI=1.05–4.24, P=0.036), patients with frequentseizures (OR=2.68, 95% CI=1.30–5.53, P=0.008), patients with lesseducated parents (OR=2.16, 95% CI=1.06–4.41, P=0.034), andpatients with religious beliefs (OR=2.84, 95% CI=1.23–6.56,P=0.015) in the 155 adult-onset patients. For the 248 patients withchildhood-onset epilepsy, frequent seizures (OR=2.23, 95% CI=1.32–3.77, P=0.003) and lower level of parental education (OR=2.71, 95%CI=1.45–5.06, P=0.002) were significant factors associatedwith CAMuse. After we excluded 24 patients with childhood-onset epilepsy whoactually used CAM after the age of 18, the significant variables were thesame.

3.3. Forms and costs of use of complementary and alternative medicine

The most commonly used form of CAM was traditional Chinesemedicine including acupuncture (102 patients, 51.5%) and templeworship (95 patients, 48.0%). Data for the other forms of CAM aresummarized in Table 3. With respect to the costs of CAM, 26.7% of

Childhood onset (N=248)

(N=83) P value Ever CAM (N=126) Never CAM (N=122) P value

7%/37.3%) 0.015 61/65 (48.4%/51.6%) 62/60 (50.8%/49.2%) 0.7053%) 0.001 69 (54.8%) 42 (34.4%) 0.001) 0.092 20.0 (12.2) 16.1 (11.2) 0.0095%) 0.370 109 (86.5%) 104 (85.2%) 0.7750%) 0.216 66 (52.4%) 75 (61.5%) 0.1483%) 0.262 75 (59.5%) 59 (64.8%) 0.3964%) 0.052 64 (50.8%) 63 (51.6%) 0.8942%) 0.360 74 (58.7%) 56 (45.9%) 0.0434%) 0.019 43 (34.1%) 19 (15.6%) 0.001%) 0.004 — — —

9%) 0.003 — — —

7%) 0.285 — — —

011).

Table 3Comparisons of CAM used by PWE in different countries.

Country Year of publication No. of PWE % of CAM experience CAM patterns in order (% of CAM users) Significant factors

Nigeria [3] 1994 720 36.8% African traditional medicine with herbaltherapy (71.7%)Spiritual healing (44.5%)Nonherbal traditional medicine (10.5%)

Females, illiterates

India [4] 2002 1000 32% Ayurvedic medicine (82%)Dietary modification (25%)Homeopathy (12%)Meditation (11%)Spiritual healing (7%)Yoga (1.6%)

Males, primary education, lower income, ruralbackgrounds

Arizona, USAa [5] 2003 379 44% Prayer (100%)Stress reduction (51%)Botanical/herbals (26%)Chiropractic care (23%)Magnets (13%)Yoga (13%)Acupuncture (6%)

Not mentioned

UKb [6] 2005 400 11.1% Not mentioned Higher educationKorea [7] 2006 246 31.3% Herbs (77%)

Health food (23%)Folk remedies (16%)Acupuncture (12%)Spiritual (1%)

Males, higher economic status, belief that CAMis safe (by logistic regression), younger, shorterduration of epilepsy, higher education

Midwestern USAa [8] 2007 228 25% Prayer/spirituality (58%)“Mega” vitamins (25%)Chiropractic care (19%)Stress management (19%)

Not mentioned

Taiwan (this article) 403 49.1% Traditional Chinese medicine, includingacupuncture (51.5%)Temple worship (48.0%)Botanicals or herbal remedies (27.3%)Prayers (11.1%)Qigong (9.1%)Over-the-counter medications (3.5%)

Adult onset: females, frequent seizures, lesseducated parents with religion beliefChildhood onset: frequent seizures, lesseducated parents

310 Y.-C. Kuan et al. / Epilepsy & Behavior 22 (2011) 308–312

patients who used CAM spent more than 100,000 NTD (equal to 3400USD), and 22.2% claimed that the CAM they used was free. The level ofcost did not significantly differ between the patients with below-average and those with above-average annual household incomes(P=0.778).

3.4. Subjective effectiveness and adverse effects of complementary andalternative medicine

Of the 198 participants who had ever used CAM, only 12 (6%) feltthat CAMwasmore effective thanCMTor as good as CMT in controllingtheir seizures, and 18 (9.1%) reported adverse effects related to CAM,including seizure aggravation (6 patients), skin lesions (4 patients),drowsiness and asthenia (3 patients), weight gain (2 patients), renalfailure (1 patient), insomnia (1 patient), and intoxication (1 patient).

3.5. Influence of the National Health Insurance program

Of the 403 participants, 188 had their seizure onset before,and 215 after, implementation of the NHI program, respectively.Compared with patients who had their first seizure after NIHimplementation, more patients who had their first seizure beforeNHI implementation sought CAM before CMT (34/188 before NHI vs22/215 after NHI, P=0.023). The percentage of patients who delayedtheir first visit to a physician at least 6 months after seizure onsetalso decreased after the NHI program was implemented (43/188before NHI vs 29/215 after NHI, P=0.014). Regarding the influenceof NHI implementation on their illness, 60% of PWE felt a positiveeffect, 2.7% claimed a negative effect, and the remainder had nostrong feelings either way.

4. Discussion

4.1. Prevalence of CAM and treatment choices of Taiwanese people withepilepsy

Although AEDs and surgical treatment have been proven effectivein controlling seizures [14,15], half of our participants had tried CAMfor seizure control. The prevalence of CAM use for epilepsy in Taiwanis slightly higher than that in other regions and countries (Table 3).Variable definitions of CAM and research designs might account forthe difference. However, CAM use is indeed common in the generalpopulation of Taiwan [16] and in patients with type 2 diabetes (61%)[9], depression (69.9%) [10], and cancer (98%) [11].

In this study, 17.9% of the patients delayed their first visit to aphysician more than 6 months after the first seizure, and 13.8% ofthe patients had tried CAM before CMT. Delayed visits to a physicianfor CMT may be explained by inadequate public awareness andunderstanding of epilepsy among Taiwanese people. A studyperformed in northern Taiwan showed that 34% of the respondentsdid not know possible causes of epilepsy, and 7% believed thatepilepsy is a form of insanity [17]. A prevalence survey performedin a city in northern Taiwan showed that 24.3% of people withactive epilepsy had not been diagnosed before that survey [18].The Chinese-speaking population also has a more negative attitudetoward epilepsy than do people in Western countries [17,19–21].

4.2. Factors related to use of complementary and alternative medicine

4.2.1. Parental educationIn developing countries, CAM use is more frequently observed

in PWE with lower levels of education [3,4], whereas in developed

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countries, CAM use is associated with higher levels of education [6,7].Interestingly, our study showed that lower level of parental education,rather than the education level of the patients themselves, wassignificantly associated with CAM use in both childhood- and adult-onset epilepsy. This reflects the idea that the opinions of the eldermembers of Taiwanese families play an important role in treatment-seeking behavior.

4.2.2. Seizure frequencyAverage seizure frequency was significantly associated with CAM

use in our participants, although other studies have shown noassociation (Table 3). Dissatisfaction with CMT might lead a patientto seek alternative treatment. However, we cannot exclude thepossibility that CAM users have poor compliance with CMT, whichresults in poor seizure control.

4.2.3. GenderIn our study, females with adult-onset epilepsy were 2.1 times

more likely to use CAM than males. This finding is consistent with astudy in Africa [3], but contrary to Indian [4] and Korean [7] studies.Another study investigating the frequency of traditional Chinesemedicine use in Taiwan also showed that females use CAMmore thanmales [22]. The reason was unclear, and differences between malesand females in their use of social networks to access CAM informationmay partially explain this finding [12].

4.2.4. Most frequently used forms of complementary and alternativemedicine

The forms of CAM used differ among different countries (Table 3).In our patients, traditional Chinese medicine is quite popular becauseit was developed in China about 3000 years ago [23], and theTaiwanese have been greatly influenced by Chinese culture. Thosewho went to worship in a temple may have been influenced by theirreligious beliefs. Temple worship is a central and regular religiousactivity in both Buddhism and Taoism, the two most commonreligions in Taiwan. Many Taiwanese believe that worship can healan illness. In the United States [5,8], prayers were the most commonform of CAM used. Although varying across cultures, religions play asimilar, important role in CAM use by PWE.

4.2.5. Effectiveness and side effects of complementary and alternativemedicine

Many previous studies have found contradictory effects of CAM onepilepsy, and recent Cochrane reviews support neither traditionalChinese medicine nor acupuncture as an effective treatment forepilepsy [23,24]. Most of our patients who had previously used CAMdid not feel that CAM treated their seizures better than CMT. However,31.8% were still using CAMwhen answering the questionnaires. Thesefindings appeared paradoxical. A possible reason for this observationis that Taiwanese people believe that traditional Chinese medicine orherbal remedies are mild and not harmful to the human body and,sometimes, can be used to promote health or for symptoms of co-morbidities associated with epilepsy or its treatment.

The most common adverse effect reported by our CAM userswas seizure aggravation. This may be due to drug interactions orproconvulsant mechanisms induced by some ingredients in tradi-tional Chinese medicine or herbal remedies [25]. Self-discontinuationof CMT might also have contributed to seizure aggravation.

4.2.6. Influence of the National Health Insurance programIn our cohort, the percentage of patients who delayed their first

visit to CMT decreased after implementation of the NHI program,and the percentage of patients who accessed CMT as a first treatmentincreased after NHI implementation. Moreover, nearly two-thirds ofour PWE felt that the NHI positively affected their decision to seektreatment. Because NHI enrollees were given almost free access to

CMT (maximum of 20 USD for co-payment and some registration feeson each visit in most clinics and hospitals), people sought a doctorearlier than they would have without NHI involvement. In terms ofconvenience and economic considerations, the NHI program couldimprove treatment compliance for better seizure control. A study hasalso shown that Taiwan's NHI is associated with a reduction in deathsfrom amenable causes [26].

4.3. Limitations of this study

This study has certain limitations. First, we included only patientsvisiting a medical center in Taipei City. Although there was nosignificant difference in our subanalysis of these patients based ontheir birthplaces and residential areas, our study might not berepresentative of the entire Taiwanese population. The enrolledpatients were those who had visited a medical hospital and wereunder CMT. In this study, we were unable to approach those who hadnever tried or had ceased using CMT. The actual prevalence of CAMuse may be higher than our results indicate. However, all of theparticipants were carefully interviewed by board-certified neurolo-gists and underwent EEG examination to accurately diagnoseepilepsy. The misdiagnoses, concealment, and unawareness ofepilepsy that might be encountered in a community door-to-doorinvestigation may be underrepresented compared with this hospital-based study. Nevertheless, this preliminary investigation did provideuseful clinical information and will influence the direction of futurenationwide and population-based studies in Taiwan.

Second, we did not ask patients when they had first visited a CAMpractitioner and if they were compliant with CMT. These itemswill be added to a future larger study. Finally, as this study was aretrospective cross-sectional survey, it is hard to avoid recall bias,especially with respect to the exact time and form of CAM use and thefrequency of seizures.

5. Conclusions

Despite these limitations, this study provides clinicians with usefulinformation that CAM, especially traditional Chinese medicine andtemple worship, is popular among Taiwanese PWE. Patients withhigher seizure frequency and less educated parents are more likely touse CAM in both adult- and childhood-onset epilepsy. Therefore, it isnecessary to improve patient satisfaction with seizure control and bealert for possible CAM use by our patients, especially when seizuresare not well controlled with AEDs. Additional effort is required toeducate patients and, more importantly, their parents that CMT is thekey to control of epilepsy, receiving CMT as early as possible is wise,and the effectiveness of CAM for seizures is unproven. The TaiwanEpilepsy Society and Taiwan Epilepsy Association also need topromote public awareness and understanding of epilepsy to improvepublic attitudes toward epilepsy and encourage appropriate treat-ment as soon as possible.

Acknowledgments

We express gratitude to Professor Chi-Wan Lai for providingcomments regarding this article.We thankMs. C.W. Lu,Ms. H.T.Wang,Ms. Y.J. Chou,Ms. P.S. Shao, andMs. J.F.Meng for their assistance duringdata collection.

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