Complementary and Alternative Medicine Use in Amyotrophic Lateral Sclerosis Cases in South Korea

Patients with amyotrophic lateral sclerosis (ALS) sometimes consider complementary and alternative medicine (CAM) because of ineffective treatment. This study investigated the prevalence and utilization pattern of CAM among patients with ALS in South Korea. Participants were recruited through homecare services for mechanical ventilation in South Korea. This study comprised a face-to-face cross-sectional survey with staff members available to address any queries. Fifty-five participants were included; all had used >1 CAM treatment option for ALS symptoms. Dietary treatments were most common, followed by functional food and massages. Most participants had obtained relevant information from family members or friends. The main reason for CAM use was an expectation that symptoms will improve with CAM; most patients were unsure of the effects. CAM use was previously discontinued by the majority of patients because of unsatisfactory effects. The mean expenditure on CAM was 288,385.28 ± 685,265.14 won per month, and the mean duration of CAM use was 11.54 ± 20.09 months. The results indicate that there is a high prevalence of CAM use among ALS patients. Healthcare providers should inquire about CAM use and openly provide accurate CAM information. Further evidence of CAM efficacy is required, as is specific guidance for consulting ALS patients regarding CAM.


Introduction
e use of complementary and alternative medicine (CAM) is growing and will continue to affect healthcare delivery in the foreseeable future [1,2]. Over 100 million Europeans are currently CAM users, with one-fifth of them using it exclusively and the same number preferring health care including CAM. ere are numerous users of CAM in Africa, Asia, Australia, and North America [2].
More specifically, patients with amyotrophic lateral sclerosis (ALS) consider CAM because of the lack of effective conventional drugs [3,4]. ey use CAM with vague hopes and beliefs of improvement, despite knowing that it is considered an unorthodox method with no definite evidence of efficacy [5,6]. It has been reported that 54% of ALS patients have tried CAM methods including acupuncture and homeopathy in a survey conducted by the German Association for Neuromuscular Diseases [7], while 42% used herbal supplements or other alternative therapies (15%) at the Utah Motor Neuron Disease Clinic in the United States [8]. In Shanghai, China, a higher number of ALS patients (99%) reported the use of at least 1 CAM treatment [9]. However, there are few studies focusing on the utilization of CAM in ALS cases [3], and there have been no published attempts to investigate the prevalence of CAM in South Korea.
erefore, this study investigated CAM use in patients with ALS in South Korea to determine the prevalence, motives, information sources, adverse effects, and cost of CAM.

Sample.
is study comprised a face-to-face crosssectional survey. e participants were recruited through home care services for mechanical ventilation. Because of the paralysis of respiratory muscles, all ALS patients need ventilators in the late stages. e South Korean government supports ventilator rental services for patients with ALS, and the ventilators are managed by home care services. Sampling through a home care service was a feasible method to recruit a representative population with ALS. e purpose of the study was described, and written consent was obtained; then, willing participants took part in the survey during the visit with staff available to address any queries. All participants were informed that participation was voluntary.
Specific inclusion criteria for patients with ALS included the ability to express oneself or communicate through caregivers. Patients with stroke, dementia, or any cognitive disorders were excluded.

Questionnaire.
A structured questionnaire for patients with ALS was developed and revised by 3 Korean medicine doctors, based on previous qualitative research [6] and the Home Remedy questionnaire developed by the Korean Institute of Oriental Medicine [10,11]. In the questionnaire, CAM was defined as either self-treatment, or a recommendation, or the administration of a procedure by a noninstitutional practitioner for health management or disease treatment [11]. e questionnaire is presented in Supplementary Appendix 1.
is study was approved by the Ethics Committee of the Wonkwang University Hospital (WKIRB 2013-3). Data were collected in 2013.

Statistical Analysis.
Microsoft Excel software (Microsoft Office Professional Plus 2013, United States) was used for data entry, data documentation, and descriptive statistical analysis [12]. Individual CAM use was categorised into 3 types following the National Centre for Complementary and Integrative Health (NCCIH); natural products, mind and body medicine, and other complementary health approaches. CAM use among respondents was measured as a percentage.
Forty-three (78.1%) of the participants were high school or college graduates, and the monthly household income was mostly between 1,010,000 and 2,000,000 Korean won (KRW; n � 18, 32.7%). In terms of past or present occupation, office workers constituted the majority (n � 33, 60.0%) of the population (Table 1).

Prevalence and Pattern of CAM Use.
Among the 55 survey respondents, all had used more than 1 CAM therapy for the symptoms related to ALS. e average number of CAM treatment methods used was 3.54 per person.
A total of 195 CAM types were used by the respondents. Mind and body medicine (50.3%) was the most commonly used category followed by natural products (46.7%) ( Table 2). Among natural products, dietary treatments (23.6%) were the most commonly used. Among mind and body medicine, massage (9.7%) was the most commonly used (Supplementary Appendix 2). e main reason for initiating CAM use was the vague expectation that symptoms would improve (n � 40, 72.7%).
is was followed by poor results from conventional medicine (n � 9, 16.4%) and the high expense of conventional medicine (n � 6, 10.9%). Users expected increase in physical strength in most cases (n � 24, 43.6%), followed by reduction in disease progression (n � 23, 41.8%) and strengthening of muscles (n � 18, 32.7%). Among 195 cases of CAM use, patients were unsure about the effects in 146 cases (74.9%); most of the others stated that they had experienced the effects (n � 39, 20%).
irty-four (61.8%) patients had previously discontinued CAM use. Among them, 70.6% had discontinued CAM because of unsatisfactory effects. Most participants were not sure about recommending CAM to other patients (n � 24, 43.6%) ( Table 2).

Duration of and Expenditure for CAM Use.
In the 195 cases of CAM use, the mean expenditure was 288,385.28 ± 685,265.14 won ($249.58) per month and the mean duration of CAM use was 11.54 ± 20.09 months.

Origins of CAM Use.
Of the 55 respondents, 35 (63.6%) obtained information from family members or friends. is was followed by the Internet, mass media, and books (n � 11, 20.0%) and healthcare providers such as doctors (n � 4, 7.3%).

Adverse Effects of CAM among Patients with ALS.
Among 55 patients, 11 (20%) experienced adverse effects from CAM use for a total of 22 events. Most adverse effects were mild (n � 16, 72.7%), and most patients continued using the same CAM method (n � 14, 63.6%). Most patients responded that they were recovering from the adverse effects (n � 10, 45.5%) ( Table 4).

Discussion
is study, involving a survey regarding CAM use in ALS patients, is the only nationwide survey available in South Korea. It provides preliminary evidence for the extent, types, motives, expenditure, and adverse effects of CAM use. e type or prevalence of CAM tends to depend on the country [7]. Similar to a survey in Shanghai, China, all participants used CAM for symptoms related to ALS. We speculate that such a high prevalence is partly due to the Korean healthcare system. Provisions for traditional forms of medicine and medical treatment, such as acupuncture and herbal therapy, are an accepted part of conventional health care and are covered by the national healthcare system in Korea [13]. erefore, South Koreans are familiar with CAM. Dietary treatment or functional foods are popular forms of CAM. Perhaps, CAM users consider these therapies only as food and perceive that there is no associated risk.  Here, we defined CAM as the recommendation or administration of a procedure by a noninstitutional practitioner for health management. Acupuncture, cupping, or Chuna manipulative treatment can be covered by an authorized Korean medicine doctor. e rate of these types of treatments is relatively low compared to that in the survey in Germany [7]. e main reason for CAM use was a vague expectation of improvement, though patients were unsure about its effectiveness; nevertheless, they used CAM for an average of 11.54 months. Perhaps, the concept of "hope" is fundamental among the reasons for seeking CAM [14].
Regarding consultation, 25% of the patients did not consult with anyone about CAM, with many of those patients stating that there was "no need to consult with healthcare providers" (51.2%). ese results coincide with a previous study indicating that ALS patients have significant levels of nondisclosure to clinicians regarding their CAM use [3]. is may reflect a desire to avoid conflict or embarrassment; also, the response and attitude of the healthcare providers towards CAM may play a significant role in ALS patient decision-making concerning CAM use [6]. Among patients who experienced adverse effects from CAM use, most patients continued using the same type of CAM (63.6%). Interestingly, most patients responded that they were in a state of recovery from the adverse effects (45.5%).
is finding indicates that physical and psychological harm may come to patients with ALS via CAM use [4]. Shared decision-making is preferred by both patients and doctors and is associated with improved compliance and better health outcomes in doctor-patient relationships [4]. erefore, healthcare providers should ask about and discuss CAM use and its adverse effects in a supportive and open manner [6]. e effects of most CAM therapies remain to be elucidated.
e ALS research group has built an interactive program known as "ALS Untangled" to identify any potential benefits or harm of CAM [15]. e ALS Untangled team has published several narrative reviews on the effects and risks of various CAM methods for ALS, and there is only 1 review paper focusing upon the clinical efficacy of CAM for ALS [4]. is review reported the effects of CAM as generally unproven and highlighted conflicting evidence regarding the effect of dietary supplements and other options for ALS management. Further evidence for the efficacy of CAM is required considering the high prevalence of CAM use among ALS patients.
is study has several limitations. e sample size is small with respect to the prevalence of ALS, and the sample only includes patients in late stages of ALS who use a ventilator; nonetheless, this study is significant because it is the first survey conducted in South Korea regarding CAM use among ALS patients.

Conclusion
In conclusion, CAM use is highly prevalent among ALS patients in South Korea. Healthcare providers should

Data Availability
e data used to support the findings of this study are available from the corresponding author upon request.

Conflicts of Interest
e authors declare that they have no conflicts of interest.