The State of Research on Complementary and Alternative Medicine in Pediatric Rheumatology




This article reviews available evidence on complementary and alternative medicine in pediatric rheumatology. Despite its common use in pediatric rheumatology (34%–92%), there is still uncertainty as to its efficacy and safety. Although results are promising for some treatments such as massage, acupuncture, mind-body interventions (eg, guided imagery and meditative breathing), and some natural health products (eg, calcium supplements and Tripterygium wilfordii ), there is a need for high-quality trials investigating the long-term effects and underlying mechanisms of these therapies as well as research on their use in this population of patients.


Because of the growing interest in unconventional therapies, health care providers caring for children are increasingly asked to recommend relevant, safe, cost-effective, and age-appropriate treatments regardless of whether or not they are considered to be conventional medicine. Interest in unconventional medicine, also called complementary and alternative medicine (CAM), among families and health care providers is increasing. Between 1994 and 2003, pediatric CAM use increased from 10% to 35%, depending on the study. Estimates vary depending on the country (approximately 2% of children in the United States, 11% in Canada, 18% in the United Kingdom, and 31% in Australia) but even more so on the type of patient population surveyed. For instance, children with chronic illnesses as well as adolescents (with or without chronic disease) are frequent users (57% use in the past year for the former and 79% lifetime use for the latter).


Not surprisingly, children and youth with juvenile idiopathic arthritis (JIA) and other pediatric rheumatology conditions also use these treatments regularly. Despite their high use and good reported effectiveness by parents, little is known about the efficacy of unconventional therapies in patients with JIA. Parents also seem to be reluctant to disclose its use to their treating physicians, and health care providers do not always inquire about the use of therapies in routine clinical care. This lack of awareness could be problematic because using these therapies in combination with conventional care may be beneficial but may also lead to a higher burden of care or diminished efficacy of medications. Adverse effects are also possible, and pharmacologic interactions exist with prescribed medication.


This article discusses the use of CAM in pediatric rheumatology as well as the characteristics and perceptions of parents who use these treatments for their child. Data about the efficacy and safety of the most commonly used types of CAM in addition to the potential challenges and avenues for future research in this field are also presented.


What is CAM


According to the National Center for Complementary and Alternative Medicine (NCCAM), a part of the National Institutes of Health in the United States, complementary medicine includes many types of therapies and products that are not considered to be a part of conventional medicine. The NCCAM divides complementary medicine into 5 domains: (1) alternative medical systems (eg, homeopathy, naturopathy, traditional Chinese medicine), (2) mind-body interventions (eg, hypnosis, biofeedback), (3) biologically based therapies (eg, herbal supplements, aromatherapy), (4) manipulative and body-based methods (eg, chiropractic, massage therapy), and (5) energy therapies (eg, therapeutic touch). However, there is no consensus on the definition of complementary medicine and on the types of therapies or products that should be considered as such. For now, the best way to deal with the many definitions is to make sure that researchers and clinicians explain clearly what they mean by CAM when they gather the data. In this article, the term CAM is used because it is inclusive of many different types of therapies, products, and health systems and has been used in other publications. Also, the NCCAM classification has been referred to here.




Characteristics of users


Use of CAM


To date, there have been 5 studies documenting the use of CAM in children with JIA, arthralgia, connective tissue disease (systemic lupus erythematosus, dermatomyositis, scleroderma, or vasculitis), or other pediatric conditions treated by pediatric rheumatologists (including fibromyalgia and rare diagnoses such as sarcoidosis). Of these studies, 4 were cross-sectional and 1 described the use of CAM during a 1 -year period. According to studies in pediatric rheumatology, the percentage of CAM use ranges between 34% and 92%. In the longitudinal study, use of CAM ranged between 10% and 24% for the various 3-month intervals, and 51% of participants had used CAM in the past to treat their JIA symptoms. Among these participants, 36% used CAM for more than a 3 -month interval.


Types of CAM Used


According to the study by Southwood and colleagues conducted in 1990 surveying 53 children with JIA from Canada (n = 18), New Zealand (n = 4), and Australia (n = 31) attending a summer camp, 70% of participants reported having used unconventional therapies. The most common therapies were copper bracelets, diet modifications, natural health products (NHPs), and chiropractic. High CAM use could be explained in part by the high disease severity of these children. In 1999, a study conducted by Hagen and colleagues on 141 children attending an outpatient rheumatology clinic and diagnosed with one of arthritis, connective tissue disease (systemic lupus erythematosus, dermatomyositis, scleroderma, or vasculitis), or other pediatric conditions (including fibromyalgia, rare diagnoses such as sarcoidosis, and those illnesses not yet diagnosed) at a tertiary care children’s hospital, 64% of the children used at least one type of CAM in the past year and half of them, more than one type. The most used interventions were vitamins, minerals, relaxation techniques, chiropractic, and homeopathy. High CAM use could be explained by the emphasis given to nutritional supplements in the survey. In fact, the use was lower (51.8%) when vitamins and minerals were excluded. Zebracki and colleagues also showed a high level of CAM use in 36 Latin American children with JIA (n = 17) and symptoms of arthralgia (n = 19) aged 6 to 16 years (56%) followed up at a rheumatology clinic at a tertiary care children’s hospital. The most popular types of interventions were prayer, massage therapy, and meditation/ relaxation. In 2007, Rouster-Stevens and colleagues surveyed 52 parents of children with JIA at a pediatric rheumatology clinic that cared for these children from birth to the age of 21 years. CAM was used in the previous 30 days in 92% of the families, including massage therapy, vitamins and other supplements, diets, and stress management techniques. Finally, Feldman and colleagues conducted a preliminary analysis of a cross-sectional study on 118 children with JIA aged 2 to 18 years, followed up at 2 outpatient rheumatology clinics. The study was continued for a 1-year period from 2003 to 2004. In this study, 34% of the patients used CAM, with the most commonly used modalities being naturopathy, acupuncture, chiropractic, and diets. In the longitudinal continuation of this study (n = 182 children with JIA at baseline), 40% of the participants used more than one type of CAM, particularly diets and supplements, chiropractic, and naturopathy. Differences in use of CAM may be explained by questionnaires, each assessing a different range of CAM types because of different definitions of CAM, different time frames, as well as populations with different sociodemographic and disease-related characteristics.


Factors Related to CAM Use


Some parents of children with JIA may seek CAM if they fear side effects of conventional medications and perceive that the child’s condition is not improving with such therapy. Most parents use CAM to relieve pain in their children. CAM was also used to improve overall well-being in 20% of the cases.


Factors associated with CAM use in children with JIA include longer disease duration, presence of more than one illness, previous CAM use by parents themselves, and parents’ perception that medications are not helping. Older age may be associated with CAM use but could also be a reflection of disease duration. In addition, parents who considered themselves as Canadian as opposed to belonging to a specific ethnic group were higher users of CAM according to Feldman’s cross-sectional study but not according to the longitudinal analysis of the same cohort by Toupin April and colleagues. Factors associated with the continued use of CAM (use in more than a single 3-month interval) in this population were previous parental use and parents’ perceived unhelpfulness of the prescribed medications. Use of CAM also seems to be related to improved psychological functioning in children with arthralgia. Also, according to the 1-year longitudinal study, children who used CAM did not seem to show improved outcomes, at least over this relatively short term but seemed to be more adherent to conventional treatment according to the rheumatologist. Finally, the level of acculturation (ie, language, ethnic identity, cultural heritage, and ethnic interaction) was not found to be associated with CAM use. None of the studies in pediatric rheumatology have examined whether ethnicity was related to the type of CAM used. However, prayer seemed to be used more extensively in a study of Latin American children, whereas vitamins, supplements, and special diets were most commonly used in studies including children from other ethnic backgrounds.


Costs Associated with CAM


None of the studies on JIA mention the financial costs of using CAM. However, one study conducted in Quebec, Canada mentioned the methods of payment for the use of CAM. Among the episodes of CAM use, 69% were paid by parents, 18% were paid by private insurance, 8% were free, 5% were paid by another source, and less than 1% was paid by the provincial universal insurance plan. The CAM treatments that were paid for most often by parents were dietary treatments (90%), chiropractic (81%), and homeopathy (75%), whereas those paid for most often by private insurance were acupuncture (46%), massage (29%), and osteopathy (27%). However, these results depend strongly on the extent of insurance coverage available to each participant, whether public or private. In the general American pediatric population, the average annual amounts spent per person on CAM visits and remedies were $73.40 and $13.06, respectively. Estimates of the 1996 national pediatric population on annual expenditures on CAM visits and remedies were $127 million and $22 million, respectively, with higher costs for children with a chronic condition.


Perceived Effectiveness and Side Effects of CAM


Many parents reported positive results of CAM. Among parents of Latin American children with JIA or arthralgia, 80% thought that CAM was somewhat helpful. Another study showed that the therapies perceived to be the most effective (rated on a 4-point scale from not helpful to very helpful) were support groups, spiritual healing, rubbing menthol-based balm on the joints, and vitamin D. Overall, CAM therapies showed a perception of helpfulness similar to conventional medication but with fewer perceived side effects. Finally, in another study, parents of children with JIA reported that 28% of episodes of use were not beneficial and 23% were somewhat beneficial, while 49% were moderately to highly beneficial, with most CAM types leading to a slight to moderate improvement.




Characteristics of users


Use of CAM


To date, there have been 5 studies documenting the use of CAM in children with JIA, arthralgia, connective tissue disease (systemic lupus erythematosus, dermatomyositis, scleroderma, or vasculitis), or other pediatric conditions treated by pediatric rheumatologists (including fibromyalgia and rare diagnoses such as sarcoidosis). Of these studies, 4 were cross-sectional and 1 described the use of CAM during a 1 -year period. According to studies in pediatric rheumatology, the percentage of CAM use ranges between 34% and 92%. In the longitudinal study, use of CAM ranged between 10% and 24% for the various 3-month intervals, and 51% of participants had used CAM in the past to treat their JIA symptoms. Among these participants, 36% used CAM for more than a 3 -month interval.


Types of CAM Used


According to the study by Southwood and colleagues conducted in 1990 surveying 53 children with JIA from Canada (n = 18), New Zealand (n = 4), and Australia (n = 31) attending a summer camp, 70% of participants reported having used unconventional therapies. The most common therapies were copper bracelets, diet modifications, natural health products (NHPs), and chiropractic. High CAM use could be explained in part by the high disease severity of these children. In 1999, a study conducted by Hagen and colleagues on 141 children attending an outpatient rheumatology clinic and diagnosed with one of arthritis, connective tissue disease (systemic lupus erythematosus, dermatomyositis, scleroderma, or vasculitis), or other pediatric conditions (including fibromyalgia, rare diagnoses such as sarcoidosis, and those illnesses not yet diagnosed) at a tertiary care children’s hospital, 64% of the children used at least one type of CAM in the past year and half of them, more than one type. The most used interventions were vitamins, minerals, relaxation techniques, chiropractic, and homeopathy. High CAM use could be explained by the emphasis given to nutritional supplements in the survey. In fact, the use was lower (51.8%) when vitamins and minerals were excluded. Zebracki and colleagues also showed a high level of CAM use in 36 Latin American children with JIA (n = 17) and symptoms of arthralgia (n = 19) aged 6 to 16 years (56%) followed up at a rheumatology clinic at a tertiary care children’s hospital. The most popular types of interventions were prayer, massage therapy, and meditation/ relaxation. In 2007, Rouster-Stevens and colleagues surveyed 52 parents of children with JIA at a pediatric rheumatology clinic that cared for these children from birth to the age of 21 years. CAM was used in the previous 30 days in 92% of the families, including massage therapy, vitamins and other supplements, diets, and stress management techniques. Finally, Feldman and colleagues conducted a preliminary analysis of a cross-sectional study on 118 children with JIA aged 2 to 18 years, followed up at 2 outpatient rheumatology clinics. The study was continued for a 1-year period from 2003 to 2004. In this study, 34% of the patients used CAM, with the most commonly used modalities being naturopathy, acupuncture, chiropractic, and diets. In the longitudinal continuation of this study (n = 182 children with JIA at baseline), 40% of the participants used more than one type of CAM, particularly diets and supplements, chiropractic, and naturopathy. Differences in use of CAM may be explained by questionnaires, each assessing a different range of CAM types because of different definitions of CAM, different time frames, as well as populations with different sociodemographic and disease-related characteristics.


Factors Related to CAM Use


Some parents of children with JIA may seek CAM if they fear side effects of conventional medications and perceive that the child’s condition is not improving with such therapy. Most parents use CAM to relieve pain in their children. CAM was also used to improve overall well-being in 20% of the cases.


Factors associated with CAM use in children with JIA include longer disease duration, presence of more than one illness, previous CAM use by parents themselves, and parents’ perception that medications are not helping. Older age may be associated with CAM use but could also be a reflection of disease duration. In addition, parents who considered themselves as Canadian as opposed to belonging to a specific ethnic group were higher users of CAM according to Feldman’s cross-sectional study but not according to the longitudinal analysis of the same cohort by Toupin April and colleagues. Factors associated with the continued use of CAM (use in more than a single 3-month interval) in this population were previous parental use and parents’ perceived unhelpfulness of the prescribed medications. Use of CAM also seems to be related to improved psychological functioning in children with arthralgia. Also, according to the 1-year longitudinal study, children who used CAM did not seem to show improved outcomes, at least over this relatively short term but seemed to be more adherent to conventional treatment according to the rheumatologist. Finally, the level of acculturation (ie, language, ethnic identity, cultural heritage, and ethnic interaction) was not found to be associated with CAM use. None of the studies in pediatric rheumatology have examined whether ethnicity was related to the type of CAM used. However, prayer seemed to be used more extensively in a study of Latin American children, whereas vitamins, supplements, and special diets were most commonly used in studies including children from other ethnic backgrounds.


Costs Associated with CAM


None of the studies on JIA mention the financial costs of using CAM. However, one study conducted in Quebec, Canada mentioned the methods of payment for the use of CAM. Among the episodes of CAM use, 69% were paid by parents, 18% were paid by private insurance, 8% were free, 5% were paid by another source, and less than 1% was paid by the provincial universal insurance plan. The CAM treatments that were paid for most often by parents were dietary treatments (90%), chiropractic (81%), and homeopathy (75%), whereas those paid for most often by private insurance were acupuncture (46%), massage (29%), and osteopathy (27%). However, these results depend strongly on the extent of insurance coverage available to each participant, whether public or private. In the general American pediatric population, the average annual amounts spent per person on CAM visits and remedies were $73.40 and $13.06, respectively. Estimates of the 1996 national pediatric population on annual expenditures on CAM visits and remedies were $127 million and $22 million, respectively, with higher costs for children with a chronic condition.


Perceived Effectiveness and Side Effects of CAM


Many parents reported positive results of CAM. Among parents of Latin American children with JIA or arthralgia, 80% thought that CAM was somewhat helpful. Another study showed that the therapies perceived to be the most effective (rated on a 4-point scale from not helpful to very helpful) were support groups, spiritual healing, rubbing menthol-based balm on the joints, and vitamin D. Overall, CAM therapies showed a perception of helpfulness similar to conventional medication but with fewer perceived side effects. Finally, in another study, parents of children with JIA reported that 28% of episodes of use were not beneficial and 23% were somewhat beneficial, while 49% were moderately to highly beneficial, with most CAM types leading to a slight to moderate improvement.

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Oct 1, 2017 | Posted by in RHEUMATOLOGY | Comments Off on The State of Research on Complementary and Alternative Medicine in Pediatric Rheumatology

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