scholarly journals Critical Review of Complementary and Alternative Medicine Use in Amyotrophic Lateral Sclerosis: Prevalence and Users’ Profile, Decision-Making, Information Seeking, and Disclosure in the Face of a Lack of Efficacy

2018 ◽  
Vol 18 (4) ◽  
pp. 225-232 ◽  
Author(s):  
Jon Adams ◽  
Michael Lee ◽  
Wenbo Peng

Background: Despite a lack of evidence of clinical efficacy for complementary and alternative medicine (CAM) use in amyotrophic lateral sclerosis (ALS), these medicines remain popular around the world. Objective: To examine the prevalence and cost of CAM use in ALS and CAM users’ profile, decision-making, information seeking, and disclosure among ALS patients. Methods: A comprehensive literature search was conducted of MEDLINE, CINAHL/SCOPUS, and AMED databases from their inception to April 2018. This review followed PRISMA guidelines and employed a quality scoring system to assess the included papers. Results: Seven papers met the inclusion criteria and were thematically analysed. ALS patients utilized a range of CAM therapies and/or products, with acupuncture and vitamins being the most frequently reported. CAM modalities were often employed concurrently with conventional medications throughout the disease process. Although some ALS patients reported positive experience regarding CAM use, many were reluctant to disclose their CAM use to their clinicians. Research focusing on CAM use in ALS remains ad hoc and restricted to only a few countries. The rigour and quality of this research field to date has been varied, predominantly drawing upon regional/localized data and failing to report CAM users’ characteristics. Conclusion: A proportion of ALS patients report utilizing CAM concurrently with conventional treatments. Such use, set amidst a dearth of evidence for the efficacy of CAM in ALS, poses potential direct and indirect risks to patient care, and medical providers should be mindful of and enquire about CAM use when treating ALS patients.

2019 ◽  
Vol 2019 ◽  
pp. 1-5
Author(s):  
Sungha Kim ◽  
Sujeong Mun ◽  
Jeonghwan Park ◽  
Sunmi Choi ◽  
Sanghun Lee ◽  
...  

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.


2008 ◽  
Vol 13 (1) ◽  
pp. 3-19 ◽  
Author(s):  
Fuschia M. Sirois ◽  
Rebecca J. Purc-Stephenson

Guided by the conceptual framework of the consumer decision-making model, the present study compared the factors associated with initial and long-term use of complementary and alternative medicine (CAM) providers. A survey was completed by 239 people recruited from the offices of physicians and CAM practitioners. Conventional medicine clients ( n = 54), new or infrequent clients ( n = 73), and established CAM clients ( n = 112) were compared to identify the decision factors for initial and long-term CAM use. Consistent with the components of this model, we found support for the roles of external influences (age, social recommendations), decision process factors (symptom severity, egalitarian provider preference), and post-decision factors (dissatisfaction with conventional care) depending on whether the pattern of CAM use was new or infrequent or established. Overall, this study provides preliminary support for the utility of the consumer decision-making model as an integrative framework for understanding the roles of correlates of CAM use.


2020 ◽  
Vol 19 ◽  
pp. 153473542098391
Author(s):  
Chieh-Ying Chin ◽  
Yung-Hsiang Chen ◽  
Shin-Chung Wu ◽  
Chien-Ting Liu ◽  
Yun-Fang Lee ◽  
...  

Background Complementary and alternative medicine (CAM) is becoming more common in medical practice, but little is known about the concurrent use of CAM and conventional treatment. Therefore, the aim was to investigate the types of CAM used and their prevalence in a regional patient cohort with breast cancer (BC). Methods BC patients were interviewed with a structured questionnaire survey on the use of CAM in southern Taiwan at an Integrative Breast Cancer Center (IBCC). The National Centre for Complementary and Integrative Health (NCCIH) classification was used to group responses. Over a period of 8 months, all patients receiving treatment for cancer at the IBCC were approached. Results A total of 106 BC patients completed the survey (response rate: 79.7%). The prevalence of CAM use was 82.4%. Patients who were employed, were receiving radiotherapy and hormone therapy, and had cancer for a longer duration were more likely to use CAM ( P < .05). Multivariate analysis identified employment as an independent predictor of CAM use (OR = 6.92; 95% CI = 1.33-36.15). Dietary supplementation (n = 69, 82.1%) was the type of CAM most frequently used, followed by exercise (n = 48, 57.1%) and traditional Chinese medicine (n = 29, 34.5%). The main reason for using CAM was to ameliorate the side effects of conventional therapies. Almost half (46.4%) of these CAM users did not disclose that they were using it in medical consultations with their physicians. Most chose to use CAM due to recommendations from family and friends. Conclusion A large portion of BC patients at the IBCC undergoing anti-cancer treatment courses used CAM, but less than half discussed it with their physicians. Given the high prevalence of CAM, it would be justifiable to direct further resources toward this service so that cancer patients can benefit from a holistic approach to their treatment.


2020 ◽  
Vol 22 (Supplement_3) ◽  
pp. iii303-iii304
Author(s):  
Fatma El-Khouly ◽  
Syed Adil ◽  
Harry Hendrikse ◽  
Gertjan Kaspers ◽  
Christof Kramm ◽  
...  

Abstract INTRODUCTION Diffuse intrinsic pontine glioma (DIPG) is a rare and aggressive childhood brainstem malignancy with a two-year survival rate of ≤10%. In this international survey study we aim to evaluate the use of complementary and alternative medicine (CAM) in this patient population. METHODS Parents of-, and physicians treating DIPG patients were asked to participate in a retrospective online survey with questions regarding CAM use during time of illness. RESULTS 120 parents and 75 physicians contributed to the online survey between January and May 2020. Physicians estimated that &lt;50% of their patients used CAM, whereas 69% of the parents reported to have used CAM to treat their child during time of illness. Cannabis was the most widely used form of CAM, followed by vitamins and minerals, melatonin, curcumin and boswellic acid. CAM was mainly used to actively treat the tumor. Other motivations were to treat side effects of chemotherapy, or to comfort the child. Children diagnosed ≥2016 were more likely to use CAM (χ2=6.08, p=0.014). No significant difference was found between CAM users and non-users based on ethnicity (χ2=4.18, p=0.382) and country of residence (χ2=9.37, p=0.154). Almost 50% of the physicians do not frequently ask their patients about possible CAM use. CONCLUSION This survey demonstrates that worldwide a considerable number of DIPG patients use CAM. Physicians should be more aware of potential CAM use and more actively discuss the topic. More research is needed to gain knowledge about possible anticancer effects of CAM and their interactions with conventional therapies.


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