Pediatric Neurology xxx (2016) 1e5
Contents lists available at ScienceDirect
Pediatric Neurology journal homepage: www.elsevier.com/locate/pnu
Original Article
Patient Use of Complementary and Alternative Medicines in an Outpatient Pediatric Neurology Clinic Daniel Kenney MD a, *, Sarah Jenkins MS b, Paul Youssef MD a, Suresh Kotagal MD a a b
Mayo Clinic Department of Child and Adolescent Neurology, Rochester, Minnesota Mayo Clinic Department of Biomedical Statistics and Informatics, Rochester Minnesota
abstract BACKGROUND: This article describes the use of complementary and alternative medicines in an outpatient pediatric neurology clinic, and assesses family attitudes toward the efficacy of complementary and alternative medicines versus prescription medications. Complementary and alternative medicine is an important element of the modern health care landscape. There is limited information about whether, and to what extent, families perceive its utility in childhood neurological disorders. DESIGN/METHODS: Surveys were distributed to 500 consecutive patients at a child neurology clinic in Rochester, Minnesota. Questions pertained to the child’s diagnoses, use of complementary and alternative medicines, and the specific complementary and alternative medicine modalities that were used. Opinions were also gathered on the perceived efficacy of complementary and alternative medicines and prescription medications. Data were compared using c2 or Fisher exact tests as indicated. RESULTS: A total of 484 surveys were returned, of which 327 were usable. Only 17.4% admitted to use of complementary and alternative medicine to treat neurological problems. However, in follow-up questioning, actually 41.6% of patients recognized that they were using one or more types of complementary and alternative medicines. Disorders associated with a statistically significant increased prevalence of complementary and alternative medicine use were headache (50.8% with headache used complementary and alternative medicine versus 35.7% without headache; P ¼ 0.008, Fisher exact test), chronic fatigue (63.2% vs 38.8%; P ¼ 0.005, Fisher exact test), and sleep disorders (77.1% vs 37.3%; P < 0.0001, Fisher exact test). CONCLUSIONS: A large proportion of pediatric neurology patients in our clinic are also using complementary and alternative medicine. Only 38.5% of these recognize themselves as using complementary and alternative medicine, underlining the need to inquire in-depth about its use. Patients who are less satisfied with their prescription medications are more likely to use complementary and alternative medicine, perhaps reflecting the less tractable nature of their disorders. Keywords: pediatric neurology, complementary and alternative medicine, headache, chronic fatigue, epilepsy
Pediatr Neurol 2016; -: 1-5 Ó 2016 Elsevier Inc. All rights reserved.
Introduction
The use of complementary and alternative medicines (CAMs) in the United States is becoming increasingly prevalent.1 From 2002 through 2012, the prevalence of CAM use among Americans has remained stable at about one in three.2,3 Among adults with neurological disorders, the prevalence of CAM use has been estimated to be 44% to 50%.4-6 Article History: Received June 26, 2015; Accepted in final form November 1, 2015 * Communications should be addressed to: Dr. Kenney; Mayo Clinic; Department of Child and Adolescent Neurology; 200 1st St. SW; Rochester, MN 55904. E-mail address: [email protected] 0887-8994/$ e see front matter Ó 2016 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.pediatrneurol.2015.11.003
The role of CAM is an area of increasing interest to pediatric care providers. The use of CAM in child neurology practice is estimated between 24% and 78%,7,8 with wide variation among sites.9 Specific conditions, such as autism spectrum disorders (ASDs) and migraine, may have greater association with use of CAM than other diseases.10,11 It is therefore helpful for pediatric providers to understand how CAMs are being used in their specific community as well as in the larger population. Methods This project was approved by the Institutional Review Board of the Mayo Clinic. An anonymous questionnaire was developed with the aid of
2
D. Kenney et al. / Pediatric Neurology xxx (2016) 1e5
the Mayo Clinic Survey Research Center. It was completed on a voluntary basis at the time of check-in to the Child Neurology clinic by families of new and returning patients. Patients were excluded if they had already been surveyed as part of this study. This survey contained a total of ten questions, requiring about five minutes complete. Questions included information on the neurological symptoms experienced by the patient, the level of education of the parent completing the questionnaire and that parent’s spouse (if applicable); whether or not the patient was using any pharmaceuticals and their perceived efficacy, whether or not the patient was using CAM and their perceived efficacy; whether the patient intended to continue the use of CAM; if treatment has been attempted with CAM alone in the recent past, and the perceived level of expertise of the treating neurologist with CAM. Also included was a list of 56 commonly used CAM modalities, along with a blank in which others could be added (e-component 1). Patients were determined to be users of CAM if they answered in the affirmative to any of the modalities in the list or checked “other.” Although the question “Does your child use CAM for their neurological condition?” was asked, this question was not used specifically to determine the prevalence of the use of CAM because of concerns that patients might not be able to reliably identify CAM. Instead, prevalence of CAM use was determined by whether or not one of the specific CAM modalities listed in question #5 was checked.
Statistical methods De-identified data were collected and managed using REDCap electronic data capture tools hosted at Mayo Clinic. REDCap (Research Electronic Data Capture) is a secure, web-based application designed to support data capture for research studies.12 In order to ensure accuracy in the responses, the surveys were completed on the same day as the clinic visit and placed in a drop box by the parent to clinic desk before leaving. Survey responses were summarized with frequencies and percentages and were compared between groups (i.e., CAM users versus non-CAM users) with c2 test (or Fisher exact test, as appropriate). Ordinal survey items (i.e., total neurological conditions) were compared with Wilcoxon rank-sum tests. P values less than 0.05 were considered statistically significant. All analyses were performed using SAS version 9.
Results
Four hundred and eighty-four surveys were returned, of which 327 included complete responses with respect to the primary analysis goals. The remaining surveys were not included in the analysis because of their lacking data on diagnosis or use of CAM. Surveys were still included in the analysis set regardless of missing data with regards to the educational level of the parent, that of the spouse, or their assessment of their physician’s competence with CAM, but completed other segments of the questionnaire. Of the neurological disorders represented in this survey, the most common were headache (128 of 327; 39.1%), followed by epilepsy (107 of 327; 32.7%) (Table). Of the 327 surveys completed, 136 (41.6%) indicated the use of at least one type of CAM. Fifty-four patients (39.7% of the CAM users; 16.5% of the total) were using three or more CAM modalities. Although the actual number of users was higher, only 57 of 327 patients (17.4%) answered in the affirmative to the question “Does your child take CAM to treat neurological problems?” The patients with the largest use of CAM in this survey were those with sleep disorders (77.1%), which continued to be true even after controlling for the use of melatonin (a therapy that is more and more frequently being prescribed by allopathic providers; 62.9% of children with sleep disorders used non-melatonin CAM). This group was followed by patients with chronic fatigue (63.2%). It should be noted in these analyses that 43.7% of patients were
TABLE. Overview of Disorders Represented and Complementary and Alternative Medicine (CAM) Use
Disorder
Number of Patients (% of Total)
Number (%) Using CAM
Number of Patients (%) Using 3 or More CAM
2 or more Epilepsy Headache Autism Attention-deficit hyperactivity disorder Delayed development, cause not known Generalized body pain (not headache) Chronic fatigue Sleep disorder Abnormal movements Tumor Multiple sclerosis (proven or suspected) Other
143 107 128 19 35
76 37 65 11 17
41 13 31 7 8
(43.7) (32.7) (39.1) (5.8) (10.7)
(53.1) (34.6) (50.8) (57.9) (48.6)
(12.5) (4.0) (24.2) (36.8) (22.9)
45 (13.8)
18 (40.0)
12 (26.7)
35 (10.7)
18 (51.4)
8 (22.9)
38 35 28 7 4
(11.6) (10.7) (8.6) (2.1) (1.2)
24 (63.2) 27 (77.1) 15 (53.6) 2 (28.6) 0 (0.0)
14 (36.8) 13 (37.1) 8 (28.6) 0 (0.0) 0 (0.0)
86 (26.3)
39 (45.3)
17 (19.8)
Note that there is some overlap, because many patients (43.7%) indicated more than one diagnosis; for this reason, percentages will not add to 100%.
marked as having multiple disorders, and each disorder was analyzed separately (with the goal of determining whether a given disorder was associated with an increased use of CAM). Of patients with multiple disorders, over half (53.1%) were users of CAM (compared with 32.6% of those without multiple disorders, P ¼ 0.0003, Fisher exact test). CAM users felt that these modalities were at least slightly effective (70.6%, Fig 1). Eighty-six patients were using both CAM and prescription medications (representing 63.2% of patients using CAM and 26.3% of the total cohort). Within the entire cohort, 51.5% of patients taking prescription medications rated them as “Very effective” or “Effective,” whereas only 36.0% of CAM users who were taking prescription drugs rated the latter as very effective. On the 100% 90% 80% 70% 60% Very effec ve
50%
Effec ve 40%
Slightly effec ve
30%
Not at all effec ve Not sure
20% 10% 0% Perceived Perceived Perceived Percieved effec veness of effec veness of effec veness of effec veness of prescrip on prescrip on prescrip on CAM according drugs (en re drugs according drugs according to CAM users cohort) to CAM users to CAM nonusers
FIGURE 1. Perceived effectiveness of complementary and alternative medicine and prescription drug therapy. (The color version of this figure is available in the online edition.)
D. Kenney et al. / Pediatric Neurology xxx (2016) 1e5
CAM modality
other hand, 62.7% of CAM nonusers who were taking prescription medications rated their drugs as “Very effective” or “Effective” (P ¼ 0.0002, Wilcoxon rank-sum test, Fig 1). Overall, most parents who indicated that they were administering some form of CAM to their child stated that they definitely or probably would continue to do so, with 25.0% of respondents reporting that they “definitely will continue” and 41.1% indicating that they “probably will continue”. Only 12.5% indicated that they probably or definitely would not continue to use CAM. The most widely used CAM modality in our cohort was melatonin, in part representing its wide use among child
3
neurologists. However, it should be noted that of the entire cohort, only 16 patients recognized melatonin as a CAM. Melatonin was followed by the “Other” category, and then by probiotics (Fig 2). When CAM use was broken down by diagnosis, this pattern generally held, with a few minor exceptions. Interestingly, restriction diets (gluten-free diet or casein-free diet) were among the top ten modalities by popularity for every diagnosis, despite the relative difficulty of maintaining such regimens. Parents who reported the use of at least one CAM modality reported a higher level of education among their spouses (where applicable): 88.5% of CAM users reported
St. John's Wort Rhodelia Reiki therapy L-tryptophan Inositol Facilitated communicaon DAN (Defeat Ausm Now) based dietary… Dimethyl glycine Choline Chlorella Ascorbigen Propionyl-l-carnine Medium chain triglycerides Ginko Evening primrose oil Buerbur Vision therapy Valerian Lemon balm Ginseng Flaxseed oil Feingold diet DHEA Ginger Enzymes DHA (docosahexanoic acid) Marijuana Kinesiology Zinc Olive oil Lavender Sensory integraon Aroma therapy Vitamin B6 Omega-3 Music therapy Gluten or casein free diet Fish oil Calcium Probiocs Other Melatonin 0
10
20
30
40
50
60
Number of paents FIGURE 2. Complementary and alternative medicine modalities by frequency of use. (The color version of this figure is available in the online edition.)
4
D. Kenney et al. / Pediatric Neurology xxx (2016) 1e5
their spouse as having at least some college education compared with 69.6% of nonusers (P ¼ 0.0008, c2 test). There was no statistically significant difference among CAM users and nonusers in the rating of their physician’s competence with CAM. However, rates of inquiry by physicians were relatively low between both groups, with 42.5% of CAM users and 57% of CAM nonusers reporting that the physician did not ask about the use of CAM. Among those who were asked, the rating of expertise of the MD was similar between the two groups. Of note, this question was only answered by patients who filled out their survey after having seen their physician and not beforehand. Because patients were given the survey with their intake paperwork, only 247 of the total had the opportunity to answer this question. Relatively few families reported recent attempts to manage solely with CAM, with only 4.9% reporting having tried to do so in the past year.
Discussion
This study illustrates the use and prevalence of CAM in a pediatric neurology referral clinic in Midwestern United States. Patients with headache, pain, sleep disorders, and fatigue syndromes were most likely to receive CAM, whereas the disorders least likely to be treated with CAM included epilepsy (multiple sclerosis and central nervous system tumor were also disorders in which CAM was seldom used, although these disorders were not well represented in our cohort; hence conclusions about these subgroups could not be reliably drawn). The increased use of CAM among patients with headache in particular is consistent with other studies of CAM use among adult patients with headache.6,13 However, Wells et al.6 found that, although CAM use was increased among adult patients with headache, few of these patients reported that they were using CAM primarily for treatment of their headache symptoms; rather, the most commonly cited reason for use of CAM among this population was general wellness and stress reduction. It could be the case that patients with headache (and perhaps other pain syndromes) have additional risk factors for use of CAM that go beyond their symptomatology. In any case, the use of CAM among pediatric patients with chronic disease (neurological and otherwise) is well documented.14-17 These findings may suggest that intractability of symptoms is a driver for the use of CAM. Our survey found no difference in the educational level among the families of patients using CAM versus those not using CAM (although where applicable, respondents for families using CAM reported higher levels of education in their spouses). Other studies have shown a tendency for greater parental education to lead to increased use of CAM.1 However, different communities may demonstrate different patterns of use in this regard. It is interesting to note that educational level did not affect the use of CAM in Olmsted County, particularly given that many Olmsted County residents are employed in health care18 because of the presence of the Mayo Clinic in the county seat of Rochester. It might have been speculated that in Olmsted County, more highly educated patients would be likely to be working in the allopathic health care field and accordingly less likely to seek
care outside that realm. However, this was not borne out by our data. It is notable that many patients initially stated that they were not using CAM, and then went on to indicate on the survey that they were indeed using CAM. It is likely that many of the patients did not recognize the CAM that they were using as being a CAM until they saw it on the list. Furthermore, the most prominently used item on our list was melatonin, which, although widely considered a CAM and therefore included in our survey, is frequently prescribed by allopathic practitioners for sleep issues. However, only 16 of 147 (10.9%) of CAM-using patients were using only melatonin, which is insufficient to account for this pattern. It could be that as a given CAM modality becomes more commonly used, modalities that are under frequent mainstream discussion or are widely advertised are not understood to fall under the aegis of CAM. If this is the case, then as these therapies become more mainstream we may expect that it will become paradoxically more difficult to elicit a history of their use. Whatever the reason for this discrepancy, it must be taken into account when performing a patient history or ascertaining the use of CAM in a population. It is also notable that about half of respondents reported that their physicians did not ask about the use of CAM; this is unfortunately consistent with previous work suggesting that most pediatric CAM use is not discussed by physicians with patients, despite patient desire to discuss this subject,19,20 although there is expected variation between sites and specialties.21 The strengths of this study include its large sample size and consecutive design. There are some limitations to this study. First, one of our findings was that people are less likely to report the use of CAM unless asked about specific CAM modalities, perhaps reflecting that they do not recognize the modalities that they are using as being CAM per se. For this reason, it is possible that the use of CAM among our population is somewhat under-reported, because we were unable to ask about every CAM modality. Another limitation is that the demographics of Olmsted County have some differences with the nation at large. Most residents of Olmsted County are white non-Hispanics,12 with education and health care the highest field of employment.18 These data are important because the use of CAM draws in many cases from cultural backgrounds that may not be represented in our population.22-24 Certainly, the prevalent modalities of CAM from region to region could be expected to vary widely from place to place, and given the heterogeneity of the American population, it may be the case that any generalization regarding use of specific CAM modalities would be suspect. However, although we did gather data on specific forms of CAM that were in use, the underlying goal of our study was not so much to determine which specific CAMs were being used but rather to gain insight into the people using CAM and the conditions under which it was being used. This information may be much more readily generalizable than information on which specific modalities are being used in a given population. Our sample sizes for certain disorders were small; this was particularly prominent in the case of patients with ASDs, who have been shown in previous studies to be prominent users of CAM. Although 57.9% of patients with ASDs were using CAM, the sample size in our study was too small for
D. Kenney et al. / Pediatric Neurology xxx (2016) 1e5
this to achieve statistical significance. These patients were under-represented because in our clinic, autism at our institution is generally followed by developmental pediatricians. Finally, our study drew respondents from a pediatric neurology clinic. These patients can be expected to already have a certain degree of confidence in allopathic medicine, because they were seeking allopathic treatment at the time of the survey’s administration. Conclusion
Our study found that CAM use is common among pediatric neurology patients. Certain disorders (headache, fatigue or pain syndromes, and sleep disorders) showed greater use of CAM. Families using CAM frequently did not self-identify as CAM users until presented with a list of CAMs, which complicates the history-taking process. Physicians may have more success in getting a history of CAM use if they ask specifically about specific CAM modalities or use examples of CAM. However, in about half of cases in our survey, physicians did not ask about CAM. The authors are grateful for the help of the Mayo Clinic Department of Child and Adolescent Neurology (Dr. John Bodensteiner, MD, Dr. Gesina Keating, MD, Dr. Kenneth Mack, MD, PhD, Dr. Katherine Nickels, MD, Dr. Marc Patterson, MD, Dr. Deborah Renaud, MD, Dr. Jan-Mendelt Tillema, MD, Dr. Elaine Wirrell, MD, and Dr. Lily Wong-Kisiel, MD), the assistance of the desk staff in distributing these surveys, the Mayo Clinic Department of Neurology for grant support, and to Ann Harris for help in data analysis.
8.
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18.
References 19. 1. Barnes PM, Bloom B, Nahin RL. Complementary and alternative medicine use among adults and children: United States, 2007. Natl Health Stat Report 2008;(12):1-23. 2. Tindle HA, Davis RB, Phillips RS, Eisenberg DM. Trends in use of complementary and alternative medicine by US adults: 1997-2002. Altern Ther Health Med. 2005;11:42-49. 3. Harris PE, Cooper KL, Relton C, Thomas KJ. Prevalence of complementary and alternative medicine (CAM) use by the general population: a systematic review and update. Int J Clin Pract. 2012;66:924-939. 4. Purohit WR MP, Zafonte RD, Davis RB, Phillips RS. Neuropsychiatric symptoms and the use of complementary and alternative medicine. The Spine Journal. 2013;13:719. 5. Wells RE, Phillips RS, Schachter SC, McCarthy EP. Complementary and alternative medicine use among U.S. adults with common neurological conditions. J Neurol. 2010;257:1822-1831. 6. Wells RE, Bertisch SM, Buettner C, Phillips RS, McCarthy EP. Complementary and alternative medicine use among adults with migraines/severe headaches. Headache. 2011;51:1087-1097. 7. Treat L, Liesinger J, Ziegenfuss JY, Humeniuk K, Prasad K, Tilburt JC. Patterns of complementary and alternative medicine use in children
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with common neurological conditions. Glob Adv Health Med. 2014; 3:18-24. Soo I, Mah JK, Barlow K, Hamiwka L, Wirrell E. Use of complementary and alternative medical therapies in a pediatric neurology clinic. Can J Neurol Sci. 2005;32:524-528. Galicia-Connolly E, Adams D, Bateman J, et al. CAM use in pediatric neurology: an exploration of concurrent use with conventional medicine. PLoS One. 2014;9:e94078. Hanson E, Kalish LA, Bunce E, et al. Use of complementary and alternative medicine among children diagnosed with autism spectrum disorder. J Autism Dev Disord. 2007;37:628-636. Huang A, Seshadri K, Matthews TA, Ostfeld BM. Parental perspectives on use, benefits, and physician knowledge of complementary and alternative medicine in children with autistic disorder and attention-deficit/hyperactivity disorder. J Altern Complement Med. 2013;19:746-750. Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Conde JG. Research electronic data capture (REDCap)dA metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform. 2009;42:377-381. von Peter S, Ting W, Scrivani S, et al. Survey on the use of complementary and alternative medicine among patients with headache syndromes. Cephalalgia. 2002;22:395-400. Hurvitz EA, Leonard C, Ayyangar R, Nelson VS. Complementary and alternative medicine use in families of children with cerebral palsy. Dev Med Child Neurol. 2003;45:364-370. Perrin JM, Coury DL, Hyman SL, Cole L, Reynolds AM, Clemons T. Complementary and alternative medicine use in a large pediatric autism sample. Pediatrics. 2012;130(Suppl 2):S77-S82. Bishop FL, Prescott P, Chan YK, Saville J, von Elm E, Lewith GT. Prevalence of complementary medicine use in pediatric cancer: a systematic review. Pediatrics. 2010;125:768-776. Franik S, Huidekoper HH, Visser G, et al. High prevalence of complementary and alternative medicine use in patients with genetically proven mitochondrial disorders. J Inherit Metab Dis. 2015;38: 477-482. Statistics UBoL. Bureau of Labor Statistics, Rochester MN [online]. Available at: http://www.bls.gov/oes/current/oes_40340.htm. Accessed April 28, 2015. Ottolini MC, Hamburger EK, Loprieato JO, et al. Complementary and alternative medicine use among children in the Washington, DC area. Ambul Pediatr. 2001;1:122-125. Doering JH, Reuner G, Kadish NE, Pietz J, Schubert-Bast S. Pattern and predictors of complementary and alternative medicine (CAM) use among pediatric patients with epilepsy. Epilepsy Behav. 2013; 29:41-46. Gruber M, Ben-Arye E, Kerem N, Cohen-Kerem R. Use of complementary alternative medicine in pediatric otolaryngology patients: a survey. Int J Pediatr Otorhinolaryngol. 2014;78:248-252. Huang TP, Liu PH, Lien AS, Yang SL, Chang HH, Yen HR. Characteristics of traditional Chinese medicine use in children with asthma: a nationwide population-based study. Allergy. 2013;68: 1610-1613. Dalla Libera D, Colombo B, Pavan G, Comi G. Complementary and alternative medicine (CAM) use in an Italian cohort of pediatric headache patients: the tip of the iceberg. Neurol Sci. 2014;35(Suppl 1):145-148. Goker Z, Serin HM, Hesapcioglu S, Cakir M, Sonmez FM. Complementary and alternative medicine use in Turkish children with epilepsy. Complement Ther Med. 2012;20:441-446.
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Contents lists available at ScienceDirect
Pediatric Neurology journal homepage: www.elsevier.com/locate/pnu
Original Article
Patient Use of Complementary and Alternative Medicines in an Outpatient Pediatric Neurology Clinic Daniel Kenney MD a, *, Sarah Jenkins MS b, Paul Youssef MD a, Suresh Kotagal MD a a b
Mayo Clinic Department of Child and Adolescent Neurology, Rochester, Minnesota Mayo Clinic Department of Biomedical Statistics and Informatics, Rochester Minnesota
abstract BACKGROUND: This article describes the use of complementary and alternative medicines in an outpatient pediatric neurology clinic, and assesses family attitudes toward the efficacy of complementary and alternative medicines versus prescription medications. Complementary and alternative medicine is an important element of the modern health care landscape. There is limited information about whether, and to what extent, families perceive its utility in childhood neurological disorders. DESIGN/METHODS: Surveys were distributed to 500 consecutive patients at a child neurology clinic in Rochester, Minnesota. Questions pertained to the child’s diagnoses, use of complementary and alternative medicines, and the specific complementary and alternative medicine modalities that were used. Opinions were also gathered on the perceived efficacy of complementary and alternative medicines and prescription medications. Data were compared using c2 or Fisher exact tests as indicated. RESULTS: A total of 484 surveys were returned, of which 327 were usable. Only 17.4% admitted to use of complementary and alternative medicine to treat neurological problems. However, in follow-up questioning, actually 41.6% of patients recognized that they were using one or more types of complementary and alternative medicines. Disorders associated with a statistically significant increased prevalence of complementary and alternative medicine use were headache (50.8% with headache used complementary and alternative medicine versus 35.7% without headache; P ¼ 0.008, Fisher exact test), chronic fatigue (63.2% vs 38.8%; P ¼ 0.005, Fisher exact test), and sleep disorders (77.1% vs 37.3%; P < 0.0001, Fisher exact test). CONCLUSIONS: A large proportion of pediatric neurology patients in our clinic are also using complementary and alternative medicine. Only 38.5% of these recognize themselves as using complementary and alternative medicine, underlining the need to inquire in-depth about its use. Patients who are less satisfied with their prescription medications are more likely to use complementary and alternative medicine, perhaps reflecting the less tractable nature of their disorders. Keywords: pediatric neurology, complementary and alternative medicine, headache, chronic fatigue, epilepsy
Pediatr Neurol 2016; -: 1-5 Ó 2016 Elsevier Inc. All rights reserved.
Introduction
The use of complementary and alternative medicines (CAMs) in the United States is becoming increasingly prevalent.1 From 2002 through 2012, the prevalence of CAM use among Americans has remained stable at about one in three.2,3 Among adults with neurological disorders, the prevalence of CAM use has been estimated to be 44% to 50%.4-6 Article History: Received June 26, 2015; Accepted in final form November 1, 2015 * Communications should be addressed to: Dr. Kenney; Mayo Clinic; Department of Child and Adolescent Neurology; 200 1st St. SW; Rochester, MN 55904. E-mail address: [email protected] 0887-8994/$ e see front matter Ó 2016 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.pediatrneurol.2015.11.003
The role of CAM is an area of increasing interest to pediatric care providers. The use of CAM in child neurology practice is estimated between 24% and 78%,7,8 with wide variation among sites.9 Specific conditions, such as autism spectrum disorders (ASDs) and migraine, may have greater association with use of CAM than other diseases.10,11 It is therefore helpful for pediatric providers to understand how CAMs are being used in their specific community as well as in the larger population. Methods This project was approved by the Institutional Review Board of the Mayo Clinic. An anonymous questionnaire was developed with the aid of
2
D. Kenney et al. / Pediatric Neurology xxx (2016) 1e5
the Mayo Clinic Survey Research Center. It was completed on a voluntary basis at the time of check-in to the Child Neurology clinic by families of new and returning patients. Patients were excluded if they had already been surveyed as part of this study. This survey contained a total of ten questions, requiring about five minutes complete. Questions included information on the neurological symptoms experienced by the patient, the level of education of the parent completing the questionnaire and that parent’s spouse (if applicable); whether or not the patient was using any pharmaceuticals and their perceived efficacy, whether or not the patient was using CAM and their perceived efficacy; whether the patient intended to continue the use of CAM; if treatment has been attempted with CAM alone in the recent past, and the perceived level of expertise of the treating neurologist with CAM. Also included was a list of 56 commonly used CAM modalities, along with a blank in which others could be added (e-component 1). Patients were determined to be users of CAM if they answered in the affirmative to any of the modalities in the list or checked “other.” Although the question “Does your child use CAM for their neurological condition?” was asked, this question was not used specifically to determine the prevalence of the use of CAM because of concerns that patients might not be able to reliably identify CAM. Instead, prevalence of CAM use was determined by whether or not one of the specific CAM modalities listed in question #5 was checked.
Statistical methods De-identified data were collected and managed using REDCap electronic data capture tools hosted at Mayo Clinic. REDCap (Research Electronic Data Capture) is a secure, web-based application designed to support data capture for research studies.12 In order to ensure accuracy in the responses, the surveys were completed on the same day as the clinic visit and placed in a drop box by the parent to clinic desk before leaving. Survey responses were summarized with frequencies and percentages and were compared between groups (i.e., CAM users versus non-CAM users) with c2 test (or Fisher exact test, as appropriate). Ordinal survey items (i.e., total neurological conditions) were compared with Wilcoxon rank-sum tests. P values less than 0.05 were considered statistically significant. All analyses were performed using SAS version 9.
Results
Four hundred and eighty-four surveys were returned, of which 327 included complete responses with respect to the primary analysis goals. The remaining surveys were not included in the analysis because of their lacking data on diagnosis or use of CAM. Surveys were still included in the analysis set regardless of missing data with regards to the educational level of the parent, that of the spouse, or their assessment of their physician’s competence with CAM, but completed other segments of the questionnaire. Of the neurological disorders represented in this survey, the most common were headache (128 of 327; 39.1%), followed by epilepsy (107 of 327; 32.7%) (Table). Of the 327 surveys completed, 136 (41.6%) indicated the use of at least one type of CAM. Fifty-four patients (39.7% of the CAM users; 16.5% of the total) were using three or more CAM modalities. Although the actual number of users was higher, only 57 of 327 patients (17.4%) answered in the affirmative to the question “Does your child take CAM to treat neurological problems?” The patients with the largest use of CAM in this survey were those with sleep disorders (77.1%), which continued to be true even after controlling for the use of melatonin (a therapy that is more and more frequently being prescribed by allopathic providers; 62.9% of children with sleep disorders used non-melatonin CAM). This group was followed by patients with chronic fatigue (63.2%). It should be noted in these analyses that 43.7% of patients were
TABLE. Overview of Disorders Represented and Complementary and Alternative Medicine (CAM) Use
Disorder
Number of Patients (% of Total)
Number (%) Using CAM
Number of Patients (%) Using 3 or More CAM
2 or more Epilepsy Headache Autism Attention-deficit hyperactivity disorder Delayed development, cause not known Generalized body pain (not headache) Chronic fatigue Sleep disorder Abnormal movements Tumor Multiple sclerosis (proven or suspected) Other
143 107 128 19 35
76 37 65 11 17
41 13 31 7 8
(43.7) (32.7) (39.1) (5.8) (10.7)
(53.1) (34.6) (50.8) (57.9) (48.6)
(12.5) (4.0) (24.2) (36.8) (22.9)
45 (13.8)
18 (40.0)
12 (26.7)
35 (10.7)
18 (51.4)
8 (22.9)
38 35 28 7 4
(11.6) (10.7) (8.6) (2.1) (1.2)
24 (63.2) 27 (77.1) 15 (53.6) 2 (28.6) 0 (0.0)
14 (36.8) 13 (37.1) 8 (28.6) 0 (0.0) 0 (0.0)
86 (26.3)
39 (45.3)
17 (19.8)
Note that there is some overlap, because many patients (43.7%) indicated more than one diagnosis; for this reason, percentages will not add to 100%.
marked as having multiple disorders, and each disorder was analyzed separately (with the goal of determining whether a given disorder was associated with an increased use of CAM). Of patients with multiple disorders, over half (53.1%) were users of CAM (compared with 32.6% of those without multiple disorders, P ¼ 0.0003, Fisher exact test). CAM users felt that these modalities were at least slightly effective (70.6%, Fig 1). Eighty-six patients were using both CAM and prescription medications (representing 63.2% of patients using CAM and 26.3% of the total cohort). Within the entire cohort, 51.5% of patients taking prescription medications rated them as “Very effective” or “Effective,” whereas only 36.0% of CAM users who were taking prescription drugs rated the latter as very effective. On the 100% 90% 80% 70% 60% Very effec ve
50%
Effec ve 40%
Slightly effec ve
30%
Not at all effec ve Not sure
20% 10% 0% Perceived Perceived Perceived Percieved effec veness of effec veness of effec veness of effec veness of prescrip on prescrip on prescrip on CAM according drugs (en re drugs according drugs according to CAM users cohort) to CAM users to CAM nonusers
FIGURE 1. Perceived effectiveness of complementary and alternative medicine and prescription drug therapy. (The color version of this figure is available in the online edition.)
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CAM modality
other hand, 62.7% of CAM nonusers who were taking prescription medications rated their drugs as “Very effective” or “Effective” (P ¼ 0.0002, Wilcoxon rank-sum test, Fig 1). Overall, most parents who indicated that they were administering some form of CAM to their child stated that they definitely or probably would continue to do so, with 25.0% of respondents reporting that they “definitely will continue” and 41.1% indicating that they “probably will continue”. Only 12.5% indicated that they probably or definitely would not continue to use CAM. The most widely used CAM modality in our cohort was melatonin, in part representing its wide use among child
3
neurologists. However, it should be noted that of the entire cohort, only 16 patients recognized melatonin as a CAM. Melatonin was followed by the “Other” category, and then by probiotics (Fig 2). When CAM use was broken down by diagnosis, this pattern generally held, with a few minor exceptions. Interestingly, restriction diets (gluten-free diet or casein-free diet) were among the top ten modalities by popularity for every diagnosis, despite the relative difficulty of maintaining such regimens. Parents who reported the use of at least one CAM modality reported a higher level of education among their spouses (where applicable): 88.5% of CAM users reported
St. John's Wort Rhodelia Reiki therapy L-tryptophan Inositol Facilitated communicaon DAN (Defeat Ausm Now) based dietary… Dimethyl glycine Choline Chlorella Ascorbigen Propionyl-l-carnine Medium chain triglycerides Ginko Evening primrose oil Buerbur Vision therapy Valerian Lemon balm Ginseng Flaxseed oil Feingold diet DHEA Ginger Enzymes DHA (docosahexanoic acid) Marijuana Kinesiology Zinc Olive oil Lavender Sensory integraon Aroma therapy Vitamin B6 Omega-3 Music therapy Gluten or casein free diet Fish oil Calcium Probiocs Other Melatonin 0
10
20
30
40
50
60
Number of paents FIGURE 2. Complementary and alternative medicine modalities by frequency of use. (The color version of this figure is available in the online edition.)
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their spouse as having at least some college education compared with 69.6% of nonusers (P ¼ 0.0008, c2 test). There was no statistically significant difference among CAM users and nonusers in the rating of their physician’s competence with CAM. However, rates of inquiry by physicians were relatively low between both groups, with 42.5% of CAM users and 57% of CAM nonusers reporting that the physician did not ask about the use of CAM. Among those who were asked, the rating of expertise of the MD was similar between the two groups. Of note, this question was only answered by patients who filled out their survey after having seen their physician and not beforehand. Because patients were given the survey with their intake paperwork, only 247 of the total had the opportunity to answer this question. Relatively few families reported recent attempts to manage solely with CAM, with only 4.9% reporting having tried to do so in the past year.
Discussion
This study illustrates the use and prevalence of CAM in a pediatric neurology referral clinic in Midwestern United States. Patients with headache, pain, sleep disorders, and fatigue syndromes were most likely to receive CAM, whereas the disorders least likely to be treated with CAM included epilepsy (multiple sclerosis and central nervous system tumor were also disorders in which CAM was seldom used, although these disorders were not well represented in our cohort; hence conclusions about these subgroups could not be reliably drawn). The increased use of CAM among patients with headache in particular is consistent with other studies of CAM use among adult patients with headache.6,13 However, Wells et al.6 found that, although CAM use was increased among adult patients with headache, few of these patients reported that they were using CAM primarily for treatment of their headache symptoms; rather, the most commonly cited reason for use of CAM among this population was general wellness and stress reduction. It could be the case that patients with headache (and perhaps other pain syndromes) have additional risk factors for use of CAM that go beyond their symptomatology. In any case, the use of CAM among pediatric patients with chronic disease (neurological and otherwise) is well documented.14-17 These findings may suggest that intractability of symptoms is a driver for the use of CAM. Our survey found no difference in the educational level among the families of patients using CAM versus those not using CAM (although where applicable, respondents for families using CAM reported higher levels of education in their spouses). Other studies have shown a tendency for greater parental education to lead to increased use of CAM.1 However, different communities may demonstrate different patterns of use in this regard. It is interesting to note that educational level did not affect the use of CAM in Olmsted County, particularly given that many Olmsted County residents are employed in health care18 because of the presence of the Mayo Clinic in the county seat of Rochester. It might have been speculated that in Olmsted County, more highly educated patients would be likely to be working in the allopathic health care field and accordingly less likely to seek
care outside that realm. However, this was not borne out by our data. It is notable that many patients initially stated that they were not using CAM, and then went on to indicate on the survey that they were indeed using CAM. It is likely that many of the patients did not recognize the CAM that they were using as being a CAM until they saw it on the list. Furthermore, the most prominently used item on our list was melatonin, which, although widely considered a CAM and therefore included in our survey, is frequently prescribed by allopathic practitioners for sleep issues. However, only 16 of 147 (10.9%) of CAM-using patients were using only melatonin, which is insufficient to account for this pattern. It could be that as a given CAM modality becomes more commonly used, modalities that are under frequent mainstream discussion or are widely advertised are not understood to fall under the aegis of CAM. If this is the case, then as these therapies become more mainstream we may expect that it will become paradoxically more difficult to elicit a history of their use. Whatever the reason for this discrepancy, it must be taken into account when performing a patient history or ascertaining the use of CAM in a population. It is also notable that about half of respondents reported that their physicians did not ask about the use of CAM; this is unfortunately consistent with previous work suggesting that most pediatric CAM use is not discussed by physicians with patients, despite patient desire to discuss this subject,19,20 although there is expected variation between sites and specialties.21 The strengths of this study include its large sample size and consecutive design. There are some limitations to this study. First, one of our findings was that people are less likely to report the use of CAM unless asked about specific CAM modalities, perhaps reflecting that they do not recognize the modalities that they are using as being CAM per se. For this reason, it is possible that the use of CAM among our population is somewhat under-reported, because we were unable to ask about every CAM modality. Another limitation is that the demographics of Olmsted County have some differences with the nation at large. Most residents of Olmsted County are white non-Hispanics,12 with education and health care the highest field of employment.18 These data are important because the use of CAM draws in many cases from cultural backgrounds that may not be represented in our population.22-24 Certainly, the prevalent modalities of CAM from region to region could be expected to vary widely from place to place, and given the heterogeneity of the American population, it may be the case that any generalization regarding use of specific CAM modalities would be suspect. However, although we did gather data on specific forms of CAM that were in use, the underlying goal of our study was not so much to determine which specific CAMs were being used but rather to gain insight into the people using CAM and the conditions under which it was being used. This information may be much more readily generalizable than information on which specific modalities are being used in a given population. Our sample sizes for certain disorders were small; this was particularly prominent in the case of patients with ASDs, who have been shown in previous studies to be prominent users of CAM. Although 57.9% of patients with ASDs were using CAM, the sample size in our study was too small for
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this to achieve statistical significance. These patients were under-represented because in our clinic, autism at our institution is generally followed by developmental pediatricians. Finally, our study drew respondents from a pediatric neurology clinic. These patients can be expected to already have a certain degree of confidence in allopathic medicine, because they were seeking allopathic treatment at the time of the survey’s administration. Conclusion
Our study found that CAM use is common among pediatric neurology patients. Certain disorders (headache, fatigue or pain syndromes, and sleep disorders) showed greater use of CAM. Families using CAM frequently did not self-identify as CAM users until presented with a list of CAMs, which complicates the history-taking process. Physicians may have more success in getting a history of CAM use if they ask specifically about specific CAM modalities or use examples of CAM. However, in about half of cases in our survey, physicians did not ask about CAM. The authors are grateful for the help of the Mayo Clinic Department of Child and Adolescent Neurology (Dr. John Bodensteiner, MD, Dr. Gesina Keating, MD, Dr. Kenneth Mack, MD, PhD, Dr. Katherine Nickels, MD, Dr. Marc Patterson, MD, Dr. Deborah Renaud, MD, Dr. Jan-Mendelt Tillema, MD, Dr. Elaine Wirrell, MD, and Dr. Lily Wong-Kisiel, MD), the assistance of the desk staff in distributing these surveys, the Mayo Clinic Department of Neurology for grant support, and to Ann Harris for help in data analysis.
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