Journal of Adolescent Health 51 (2012) 200 –202
www.jahonline.org Adolescent health brief
Complementary and Alternative Medicine Use Among Youth With Juvenile Arthritis: Are Youth Using CAM, but Not Talking About It? Elisabeth M. Seburga,b,*, Keith J. Horvath, Ph.D.b, Ann W. Garwick, Ph.D., R.N., L.P., F.A.A.N.c, Barbara J. McMorris, Ph.D.d,e, Richard K. Vehe, M.D.f, and Peter Scal, M.D., M.P.H.a a
Department of Pediatrics, Medical School, University of Minnesota, Minneapolis, Minnesota Division of Epidemiology and Community Health, School of Public Health, University of Minnesota, Minneapolis, Minnesota c School of Nursing, University of Minnesota, Minneapolis, Minnesota d Center for Adolescent Nursing, School of Nursing, University of Minnesota, Minneapolis, Minnesota e Healthy Youth Development-Prevention Research Center, Division of Adolescent Health and Medicine, Department of Pediatrics, Medical School, University of Minnesota, Minneapolis, Minnesota f Division of Pediatric Rheumatology, Medical School, University of Minnesota, Minneapolis, Minnesota b
Article history: Received August 18, 2011; Accepted January 6, 2012 Keywords: Complementary medicine; Alternative medicine; Juvenile rheumatoid arthritis; Adolescent– health care provider communication; Quality of life.
A B S T R A C T
Purpose: To examine self-reported use and correlates of complementary and alternative medicine (CAM) in adolescents with juvenile arthritis (JA). Methods: One hundred thirty-four adolescents with JA completed an online survey of their use of, interest in, and discussions about CAM. The PedsQL 4.0 SF15 assessed quality of life. Results: The majority (72%) of youth reported using ⱖ1 CAM modality. Use did not differ by sex, age, race, or geographic location. The most commonly used CAM modalities were yoga (45%) and meditation, relaxation, or guided imagery (40%). Low psychosocial quality of life was associated with massage and meditation, relaxation, or guided imagery use (p ⬍ .05). Only 46% of youth reported discussing CAM with a health care provider. Nonusers were most interested in learning more about massage (79%) and yoga (57%). Conclusions: Youth with JA reported high use of CAM, but few discussed CAM with health care providers. Findings suggest practitioners should engage adolescents in discussions about CAM. 䉷 2012 Society for Adolescent Health and Medicine. All rights reserved.
Complementary and alternative medicine (CAM) is a system of holistic care used separately or in conjunction with conventional medicine [1]. Data from clinical samples and national surveys suggest youth in the United States increasingly use CAM, with higher use reported among youth with chronic conditions [2,3]. Studies indicate considerable rates of CAM use by youth with juvenile arthritis (JA) [4 –7]. Health care providers (HCPs) must be informed about CAM use among their patients with JA, although it appears that these conversations happen infrequently
* Address correspondence to: Elisabeth M. Seburg, Pediatrics and Adolescent Health, University of Minnesota, 717 Delaware St SE, Minneapolis, MN 55414. E-mail address:
[email protected] (E.M. Seburg).
IMPLICATIONS AND CONTRIBUTION
This study provides a selfreported estimate of CAM use by youth with JA. Most youth report using CAM, but few discussed it with HCPs. Practitioners should regularly include CAM as a topic in their practice with adolescents with JA.
[5]. Previous studies of CAM use among youth with JA are limited by their reliance on parental report, which may differ from adolescents’ actual use of CAM without parental knowledge. This study describes rates of self-reported CAM use among adolescents with JA. In addition, it describes characteristics of youth who report CAM use, youth-provider discussions of CAM, and nonusers’ interest in learning more about CAM. Methods Adolescents (n ⫽ 134) completed an online survey about living with arthritis. Potential participants were passively recruited through flyers posted at Minnesota and Wisconsin pediatric rheumatology clinics and chapters of the Arthritis Foundation, as well as targeted advertisements on the social media Web
1054-139X/$ - see front matter 䉷 2012 Society for Adolescent Health and Medicine. All rights reserved. doi:10.1016/j.jadohealth.2012.01.003
E.M. Seburg et al. / Journal of Adolescent Health 51 (2012) 200 –202
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Table 1 Characteristics of CAM users Characteristic
Yogaa % (n)
Herbal medicinea % (n)
Chiropracticb % (n)
Total sample Sex Male (16%, n ⫽ 22) Female (84%, n ⫽ 112) Age (years) 14–16 (60%, n ⫽ 80) 17–19 (40%, n ⫽ 54) Race White or European American (82%, n ⫽ 109) Nonwhite (18%, n ⫽ 24) Geographic location Urban (92%, n ⫽ 123) Rural (8%, n ⫽ 11) Quality of life—physical (Mean ⫽ 49.7) Low PedsQL physical High PedsQL physical Quality of life—psychosocial (Mean ⫽ 62.6) Low PedsQL psychosocial High PedsQL psychosocial
45.1 (60)
39.6 (53)
36.1 (48)
29.8 (39)
19.4 (26)
71.6 (96)
54.5 (12) 43.2 (48)
50.0 (11) 37.5 (42)
31.8 (7) 36.9 (41)
36.4 (8) 28.4 (31)
31.8 (7) 17.0 (19)
72.7 (16) 71.4 (80)
47.5 (38) 41.5 (22)
33.8 (27) 48.1 (26)
35.4 (28) 37.0 (20)
29.9 (23) 29.6 (16)
21.3 (17) 16.7 (9)
72.5 (58) 70.4 (38)
43.5 (47) 50.0 (12)
42.2 (46) 25.0 (6)
38.9 (42) 20.8 (5)
32.7 (35) 13.0 (3)
22.0 (24) 8.3 (2)
72.5 (79) 66.7 (16)
46.7 (57) 27.3 (3)
39.8 (49) 36.4 (4)
35.0 (43) 50.0 (5)
31.1 (38) 11.1 (1)
18.7 (23) 27.3 (3)
72.4 (89) 63.6 (7)
39.1 (25) 51.5 (35)
43.8 (28) 36.2 (25)
40.6 (26) 31.9 (22)
28.1 (18) 31.3 (21)
17.2 (11) 21.7 (15)
71.9 (46) 72.5 (50)
46.3 (31) 43.9 (29)
58.2d (39) 20.9d,e (14)
47.8d (32) 24.2d,e (16)
37.3 (25) 21.9 (14)
25.4 (17) 13.4 (9)
80.6d (54) 62.7d,e (42)
Meditation, relaxation, or guided imagerya % (n)
Massagea % (n)
Overall CAMc % (n)
CAM ⫽ complementary and alternative medicine. a Considered a user if participant reported any use (i.e., a few times per year, a few times per month, a few times per week, or every day). b Considered a user if participant reported any use (i.e., a few times per year, a few times per month, or a few times per week). c Participants who reported using one or more CAM therapies, excluding vitamins and minerals. d Significant p ⬍ .05; p value derived from 2 test. e Significant p ⬍ .05; based on comparing high vs. low levels in multivariate logistic regression controlling for all other variable listed in this table.
site Facebook. Recruitment materials described the survey as an opportunity for youth with JA to share opinions about their health and health care. Adolescents (14 –19 years) who selfreported having arthritis and who lived in the United States were eligible. Surveys were completed between June and December 2010, and participants received a $10 gift card. Online informed consent was obtained from adolescents. The Institutional Review Board of the University of Minnesota approved all study protocols, including a waiver of the requirement for parental consent. Participants completed demographic and CAM items with questions based on published measures [8,9]. Building on prior studies of commonly used CAM therapies in youth with JA [4 – 6], the frequency of use of biologically based therapies (vitamins and minerals, herbal medicine), manipulative and body-based therapies (massage, chiropractic), and mind-body therapies (yoga, meditation, guided imagery, and relaxation) [2] was assessed on a 5-point scale, from “never” to “every day.” Less commonly used CAM modalities (energy therapies or alternative medical systems) were not assessed [2]. Nonusers indicated their interest in learning more about modalities (not at all, somewhat, or very interested). All participants reported whether they had discussed a modality with their HCP (yes/no). Overall, CAM use was defined as using one or more CAM modality (ⱖ1 vs. no use). We excluded vitamin and mineral use in analyses because of the difficulty in differentiating use of a megadose of vitamins and minerals from daily multivitamins and minerals. The PedsQL 4.0 SF15 [10] measured health-related quality of life (HRQOL), reported as two subscales: (1) Physical functioning (5 items, ␣ ⫽ .60) and (2) Psychosocial health summary (10 items, ␣ ⫽ .81). A median split classified participants’ scores as “low” or “high.” Self-reported use of, interest in, and discussions about CAM were assessed with percentages and frequencies, and 2analyses were used to test group differences. Multiple logistic regression
determined the independent contribution of each variable of interest to CAM use. Results Most participants (84%) reported a juvenile rheumatoid arthritis or juvenile idiopathic arthritis diagnosis, with or without another diagnosis. Frequency of CAM use by modality and group characteristics is presented in Table 1. Seventy-two percent of respondents reported use of one or more CAM therapies. No significant associations were found between CAM use and sex, age, race, or geographic location. Lower psychosocial quality of life (QoL) was associated with use of massage, meditation, relaxation, or guided imagery, and the composite measure of any CAM use in both bivariate and multiple logistic regression models (p ⬍ .05; Table 1). Discussions of CAM with HCPs varied by modality and use of CAM (Table 2). Overall, 46% of youth reported discussing one or more CAM modalities with an HCP. Older youth (ages 17–19) were more likely than younger youth (ages 14 –16) to discuss CAM (57% vs. 31%, p ⬍ .05), and users of each modality were more likely than nonusers to have discussions (Table 2). No significant differences were found in discussions of CAM by gender, race, geographic location, or HRQOL. For most CAM modalities, most nonusers were somewhat or very interested in learning more (79% massage; 57% yoga; 54% chiropractic; 50% herbal medicine; and 43% meditation, relaxation, or guided imagery). Discussion Nearly three-fourths (72%) of youth used one or more CAM modalities. The results of this youth self-report study confirm high rates of youth CAM use based on parent report in prior studies [4,5].
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E.M. Seburg et al. / Journal of Adolescent Health 51 (2012) 200 –202
Table 2 Discussions of CAM with health care provider Types of CAM
Respondents who ever discussed CAM % (n)
Users who ever discussed CAM % (n)
Nonusers who ever discussed CAM % (n)
Yoga (n ⫽ 134) Massage (n ⫽ 132)a Herbal medicine (n ⫽ 134) Meditation, relaxation, guided imagery (n ⫽ 133)a Chiropractic (n ⫽ 134)
26.9 (36) 26.5 (35) 20.9 (28) 18.0 (24) 16.4 (22)
33.3 (20) 57.4b (27) 56.4b (22) 39.6b (21) 53.8b (14)
21.9 (16) 9.5b (8) 6.5b (6) 3.8b (3) 7.4b (8)
a b
n ⫽ 134 because of missing data. p ⬍ .01; based on 2 test comparing user versus nonuser.
Lower psychosocial QoL was associated with CAM use, possibly suggesting that CAM is an adaptive response to psychosocial distress. This finding was surprising given a recent study showing that CAM use was not associated with improved HRQOL in children with JA [7]. Fewer than half of adolescents in this sample reported discussing CAM with HCPs, which is consistent with earlier reports of low rates of such discussions when assessed by parental report [5]. Most notably, rates of CAM use discussions with HCPs were low among younger youth and nonusers. HCPs who work with youth with JA should be knowledgeable about CAM modalities and skilled at counseling youth and their families about CAM use. Engaging all youth in discussions about CAM presents an opportunity, as nonusers reported considerable interest in learning more about CAM. The small sample size, convenience sampling, and selfreported arthritis diagnosis limit the conclusions that can be drawn from this study. CAM measures, although used in other studies, have not been validated beyond face validity as assessed by youth advisors and study investigators. In addition, previously reported correlates of CAM use, such as disease duration and health status, were not assessed in this study [2,4,7]. Therefore, the association between QoL and CAM use should be interpreted cautiously; future studies should investigate the relationships between disease duration, health status, QoL, and CAM use. Finally, CAM modalities not included in this study, such as prayer and naturopathy, are commonly used by youth with JA [5,6]. This study’s narrow definition of CAM may underestimate the rate of CAM use among youth with JA and provider–adolescent discussions of CAM. Acknowledgments Funding for this research and data collection was provided by a grant from the University of Minnesota, Academic Health Cen-
ter Faculty Research Development Program titled “InternetBased Health Care Transition Program” to Drs. Scal, Garwick, and Horvath and to Dr. Scal from the Agency for Healthcare Research and Quality (K08HS015511) “Entry into Adult Care for Youth with Chronic Conditions.” References [1] National Institutes of Health, National Center for Complementary and Alternative Medicine. What is complementary and alternative medicine? Available at: http://nccam.nih.gov/health/whatiscam/ Accessed July 15, 2011. [2] Barnes PM, Bloom B, Nahin RL. Complementary and alternative medicine use among adults and children: United States, 2007. In: National Health Statistics Reports; no 12. Hyattsville, MD: National Center for Health Statistics, 2008. [3] Kemper KJ, Vohra S, Walls R. The use of complementary and alternative medicine in pediatrics. Pediatrics 2008;122:1374 – 86. [4] Hagen LEM, Schneider R, Stephens D, et al. Use of complementary and alternative medicine by pediatric rheumatology patients. Arthritis Care Res 2003;49:3– 6. [5] Zebracki K, Holzman K, Bitter KJ, et al. Brief report: Use of complementary and alternative medicine and psychological functioning in Latino children with juvenile idiopathic arthritis or arthralgia. J Pediatr Psychol 2007;32: 1006 –10. [6] April KT, Feldman DE, Zunzunegui MV, et al. Longitudinal analysis of complementary and alternative health care use in children with juvenile idiopathic arthritis. Complement Ther Med 2009;17:208 –15. [7] Toupin-April K, Feldman DE, Zunzunegui MV, et al. Is complementary and alternative healthcare use associated with better outcomes in children with juvenile idiopathic arthritis? J Rheumatol 2009;36:2302–7. [8] Patterson C, Arthur H. A complementary alternative medicine questionnaire for young adults. Integr Med Insights 2009;4:1–11. [9] Cotton S, Humenay Roberts Y, Tsevat J, et al. Mind-body complementary alternative medicine use and quality of life in adolescents with inflammatory bowel disease. Inflamm Bowel Dis 2010;16:501– 6. [10] Chan KS, Mangione-Smith R, Burwinkle TM, et al. The PedsQLTM: Reliability and validity of the short-form generic core scales and asthma module. Med Care 2005;43:256 – 65.