Use of complementary and alternative medicine by parents of children with HIV infection and asthma and well children.
Materials and Methods: Parents of 152 subjects [H (n = 46). A (n = 53), and W (n = 53)] were interviewed on the use of CAM for their children, types of CAM, reasons for use/nonuse, methods of payment, and perceived benefits for their children.
Results: Compared with parents of the W and A groups, parents of the H group were less likely to be employed, were less likely to have private insurance, were less likely to have a high school or college education, and were more likely to be black. Interestingly, 38% of the W parents used CAM in their children compared with 22% in the H group and 25% in the A group. More than 80% of all three groups paid out of pocket for their use of CAM in their children. Within these groups, H parents were more likely to want CAM as part of their child's medical care (H = 91% vs W = 75% and A = 67%, P = 0.02) and were more likely to believe that CAM was expensive (H = 78% vs W = 57% and A = 60%, P < 0.01).
Conclusions: Our study revealed a relatively high rate of CAM usage by parents of all three study groups. Although parents of children with HIV infection were more likely to want CAM as part of their children's medical care, their rate of CAM usage was not higher than that in well children. This may be related to their socioeconomic factors. A larger and more diverse study population may provide more information on factors contributing to CAM usage in chronically ill and well children.
Key Words: asthma, complementary and alternative medicine, well children, human immunodeficiency virus infection, prevalence
There has been an increasing interest in complementary and alternative medicine (CAM), both among health care professionals and the general public. (1) A national survey in 1997 by Eisenberg et al (2) indicated that 42% of adults in the general population in the United States used CAM, an increase of 8% from a previous 1990 survey conducted by the same authors. (3) In a more recent survey published in 2004 and conducted by the National Center for Health Statistics, the Centers for Diseases Control and Prevention revealed that 62% of US adults used some form of CAM therapy during 2002. (4) In particular, patients with chronic conditions such as cancer, asthma, chronic pain, and other recurring illnesses for which conventional medical therapy has been inadequate or not helpful have often turned to CAM. (5-12)
Infection caused by human immunodeficiency virus (HIV) at present is incurable. Despite advances in the treatment of HIV infection, morbidity remains high. (13) In light of the limitations of conventional medical therapy for HIV infection, CAM utilization would be expected to be high. Indeed, several studies have demonstrated a high rate of CAM utilization in adult patients with HIV infection. In these studies, the incidence of CAM usage ranged from 15 to 100%, depending on the patient population studied and the definition of CAM used by the investigators. (14-18)
In contrast to the volume of data concerning CAM usage in adults, the data in children are more limited. In particular, there have been no published studies of CAM usage in the pediatric HIV-infected population. Surveys of CAM usage have shown that the incidence of CAM use in the general pediatric population is between 9 and 70%. (19-24) There was a higher rate of CAM usage in children with chronic conditions such as cystic fibrosis, asthma, and cancer. (5-7,11,21-23)
Given the increasing interest in CAM and the serious nature of HIV infection, we hypothesized that parents of children with HIV infection would be more likely to use CAM therapies for their children than children with a less severe chronic condition such as asthma or parents of well children. To test this hypothesis, we conducted a survey of CAM usage in families with HIV-infected children, children with asthma, and well children.
Materials and Methods
All the study subjects were recruited from the patient population seen at the primary care and subspecialty care clinics at the State University of New York at Stony Brook, New York. The institutional review board approved the protocol, and written informed consent was obtained from all parents guardians of study patients. Care was undertaken to ensure that one questionnaire per child per family was used.
The study was conducted during the period of June 1998 through March 2000. Parents/guardians of perinatally acquired HIV-infected children with no other chronic illness and parents of the asthmatic and well children were interviewed on the use of CAM for their children. The first author conducted all of the interviews in a private room during a routine clinic visit.
Using a questionnaire, data also were collected regarding patient demographics and type of medical insurance, as well as education level, marital status, and employment status of the parent(s)/guardian(s). The HIV-infected patients were classified on the basis of standard pediatric HIV clinical and immune categories. (25) Parents/guardians were specifically questioned on their use of different CAM therapies. CAM modalities were reviewed and discussed with each parent/guardian. Examples of each CAM modality in the questionnaire were provided during the interview process. Questions raised by parents/guardians were discussed, and clarifications were made as needed. Complementary and alternative medicine as defined by the National Center for Complementary and Alternative Medicine (NCCAM) is a group of diverse medical and health care systems, practices, and products that are not presently considered to be part of conventional medicine. (26) The different CAM modalities included in the questionnaire were selected to represent the five main categories of CAM, based on the NCCAM: alternative medical systems (homeopathy); mind-body interventions (hypnosis, prayer, healing ritual, meditation, and yoga); biologically based therapies (aromatherapy, home remedies, herbal remedies, and vitamins including minerals and antioxidants; manipulative and body-based methods (chiropractic care, massage therapy) as well as energy therapies (acupuncture, therapeutic touch, and qi gong). For each specific treatment, parents/guardians were asked about the specific CAM modality used, cost, mode of payment, and effects of the remedy. Parents/guardians were also asked if they thought CAM was expensive, whether they would like to see CAM included in their child's medical care, and whether they have disclosed CAM usage to their primary physician.
Data from the questionnaire were entered into a Filemaker database (Filemaker Inc, Santa Clara, CA). Demographics, use of CAM therapies, reasons for use, and costs of use were compared across the three groups by means of the Student t test and [chi square] analysis. Analysis of variance was used to compare means across the three groups. The effects of individual demographic characteristics on the likelihood of CAM usage in each study group were analyzed by using the [chi square] test or Fisher exact test. The statistical analysis was performed using Statistical Analysis Software (SAS Version 7, Cary, NC). Statistical significance was designated at a level of P < 0.05.
Parents/guardians of 152 study subjects were interviewed. This included parents/guardians of 46 perinatally acquired HIV-infected children with no other chronic illness, parents/guardians of 53 children with moderate to severe asthma and with no other chronic illness, and parents/guardians of 53 well children. When the three study groups were compared (Table 1), parents/guardians of the HIV group were less likely to be employed (P < 0.01), less likely to have private insurance (P < 0.01), more likely to have no high school or college education (P = 0.01), and more likely to be black (P < 0.01). There was no significant difference among the three groups in terms of marital status (P = 0.32). Among the three groups, the vast majority of the parents/guardians interviewed were female. The patients' mean age for the three groups was 7.3 [+ or -] 4.2 years and was comparable among the three study groups. Ninety-six percent of the HIV-infected patients were receiving highly active antiretroviral treatment: 56% were receiving a protease inhibitor therapy and 40% were receiving a protease inhibitor-sparing regimen. Four percent of these patients were not receiving any antiretroviral medications. Thirty-four percent were in the pediatric HIV clinical categories A (mildly symptomatic disease); 32% in the clinical category B (moderately symptomatic disease); and 34% in the clinical category C (severely symptomatic disease). At the time of the study, 72% were classified into the immune category 1 (no immune suppression). Twenty-two percent of patients were in the immune category 2 (moderate immune suppression) and 6% were in the immune category 3 (severe immune suppression).
The effects of individual demographic characteristics on the likelihood of using CAM therapies were evaluated in each study group. Within the HIV group, CAM usage by parents/guardians was reported in 40% (10 of 25) of those who had a high school education compared with none (0 of 21) of those with less than a high school education (P < 0.01). In the same group, CAM usage was reported in 40% (8 of 20) of nonblacks versus 9% (2 of 26) of blacks (P = 0.04). For this analysis, blacks included blacks and interracial persons with one black parent. Employment status, insurance status, and marital status were not statistically different between CAM users and CAM nonusers in the HIV group.
In the asthma group, CAM usage was reported in 31.7% (13 of 41) of those who had a high school education compared with none (0 of 12) of those with less than a high school education (P = 0.02). In addition, CAM usage was reported in 33.3% (13 of 39) of those who were employed and in none (0 of 14) of those who were unemployed (P = 0.01). Ethnicity, insurance status, and marital status were not statistically different between CAM users and CAM nonusers in the asthma group.
Within the healthy child group, there was no difference in educational status, ethnicity, insurance status, employment status, and marital status between CAM users and CAM nonusers.
The overall prevalence of CAM usage in the three study groups is shown in Table 2. The rates of CAM usage in the healthy child group (38%), the asthma group (25%), and the HIV group (22%) were not significantly different (P = 0.16). The different CAM modalities used also are shown in Table 2. The most frequent CAM modalities used were multivitamins (117 of 152, 77%), prayer (109 of 152, 72%), and home remedies (36 of 152, 24%), followed by aromatherapy 33/152 (21%) and herbal remedies 29/152 (19%). The parents/guardians of well children were more likely to use herbal therapies than the parents of either the HIV or the asthma group (32% vs 11% and 13%, P = 0.01); the majority of these patients absorbed the cost of such therapies themselves (88%). All three groups used home remedies (20 to 28%) for wound healing, cold symptoms, or relief of upset stomach, and they were equally likely to use aromatherapy (17 to 24%) and chiropractic care (4 to 7%). Parents/guardians of HIV-infected children were more likely to pray (83%), compared with those of asthmatic (62%) and well children (72%) (P = 0.03). All three groups used meditation (4 to 11%). Massage was used by all three groups (4 to 13%) for stress reduction, emotional relief, and aid in coping with illnesses. There was a very low usage of acupuncture, homeopathy, healing rituals, and therapeutic touch that precluded detailed statistical analysis of the use of these modalities. None used hypnosis, qi gong, or yoga.
The attitude of parents/guardians toward CAM usage is shown in Table 3. Parents/guardians of the HIV-infected patients were more likely to want CAM modalities (mostly acupuncture and massage) to be part of their children's regular medical care (P = 0.02). They were also more likely to believe that CAM was expensive (P < 0.01). Compared with the families of well children and HIV-infected patients, parents/guardians of the asthma group were more likely to fear the side effects of CAM (P = 0.03) and were less likely to believe that CAM would improve the quality of life of their children (P = 0.01). The majority of parents/guardians in all three groups thought CAM was cost-effective (economical in terms of the health benefits received for the money spent). Fifty percent of parents/guardians in the healthy child and HIV-infected groups and 75% in the asthma group informed providers about their use of CAM.
This study revealed a relatively high rate of CAM usage by parents/guardians of our pediatric outpatient population. It is difficult to compare the prevalence of CAM usage in our study population with that reported in the literature because of the lack of uniform definitions of CAM. (19,20,24) Spigelblatt et al (20) conducted the largest survey of CAM usage in well children. These investigators found an 11% prevalence of CAM usage. This study was performed in Canada and covered different modalities such as osteopathy, oligopathy, and homeopathy and may not reflect the same CAM usage in the United States. Our survey used a broader definition of CAM and included practices such as prayer, herbal remedies, meditation, and home remedies. These remedies may be easier to access than those used by Spigelblatt et al, and that might explain the higher rate of CAM usage in our study.
In our present study we found a comparable rate of CAM usage in children with HIV infection, children with asthma, and well children that is different from our prestudy hypothesis that parents of HIV-infected children would be more likely to use CAM therapies than parents of children with a less severe chronic condition such as asthma or parents of well children. It is possible that because our study population of HIV-infected patients was relatively healthy, their parents/guardians were therefore less likely to seek alternative therapies. The sample size in each of the clinical and immunologic categories was not large enough to assess CAM usage on the basis of HIV clinical and immunologic status, which would have been helpful in assessing the validity of this speculation. Also, some parents/guardians may have been aware of the potential drug-drug interactions and thus were reluctant to use any biologically based CAM therapies.
Although we speculate that mild immunologic impairment may have been the factor that resulted in a lower rate of CAM usage in the HIV-infected group than we had hypothesized, our data suggest that the most likely reason was lack of access. In our survey, the parents/guardians of the HIV-infected patients had the highest interest in CAM therapy. However, they also had the highest rate of unemployment, the lowest rate of high school or college education, and the highest rate of being on Medicaid. It may be that the HIV-infected families are interested in CAM but have limited access to such treatment modalities as the result of socioeconomic barriers. This could also explain the difference between the rate of CAM usage in our pediatric HIV-infected group as compared with that reported in HIV-infected adults (15 to 68%). (8,16-18) Most adults with HIV infection who use CAM are well educated and have full-time employment (8,17,27) and therefore may have more resources to access CAM. Acupuncture, massage therapy, and homeopathy are the most common CAM therapies used by HIV-infected adults. These therapies are not usually covered by the majority of medical insurance and are relatively expensive. (16,28-31)
The relatively lower rate of CAM usage in our asthmatic children may reflect the specific treatment preference of our study population. The vast majority of our asthmatic patients have been compliant with their scheduled outpatient appointments and had well-controlled asthma (data not shown). Indeed, the fact that asthmatic patients came regularly to the clinic may indicate their preference for conventional medicine over CAM. Supporting this speculation is our finding that the parents/guardians of asthmatic children were more likely to fear the potential side effects of CAM and were less likely to believe that CAM would improve the quality of life of their children.
Surprisingly, more than one third of our healthy child population used CAM. This high CAM usage rate in the well children group may be because parents/guardians of this group are more health-minded. Since these children have no underlying illness, their parents/guardians may possibly be more willing to try CAM with prevention of illness and general wellness in mind.
Potential limitations to our study include small sample size for each group; therefore, our results may not be representative of the true prevalence of CAM use in the pediatric population. We also used only a single institution for our survey, which would fail to account for any regional or geographic differences in CAM usage among the pediatric population. Additional studies using larger and more diverse populations may provide further information regarding CAM usage in pediatrics and in those children with chronic illnesses such as HIV infection and asthma.
Although we found a high incidence of CAM usage in our patient population, 25 to 50% of parents/guardians reported that they did not inform their health care provider that they were using CAM. Some CAM treatments may be associated with adverse side effects or interactions with conventional therapies. (32-34) Given the increasing use of CAM and the significant degree of underreporting demonstrated in our study as well as in others, it is important for health care providers to actively question parents/guardians and patients on possible CAM use. Subsequently, comprehensive programs can be developed to address both holistic and specific needs of the patients through collaboration between traditional and alternative medicine practitioners.
In summary, our survey of CAM usage by families of HIV-infected children, well children, and asthmatic children demonstrated a relatively high rate of CAM usage among all three groups. There was a lower rate of CAM usage in the HIV group than we originally had anticipated, which may have been the result of socioeconomic barriers. Future work should be directed to assessing the importance of socioeconomic barriers as an impediment to CAM usage as well as to determine the importance of CAM to the medical care of the HIV-infected pediatric patients. In addition, parents/guardians need to be encouraged to inform their clinicians of any CAM usage to receive more comprehensive health care for their children. Clinicians should actively inquire about CAM usage to fully understand their patients' needs and to be able to provide a complete comprehensive care for children.
Appendix of Terminology
Complementary and alternative medicine is a group of diverse medical and health care systems, practices, and products that are not presently considered to be part of conventional medicine. Complementary medicine is used together with conventional medicine. Alternative medicine is used in place of conventional medicine.
The NCCAM classifies CAM therapies into five categories, or domains, described below. (26)
Alternative medical systems
Alternative medical systems are built on complete systems of theory and practice. Often, these systems have evolved apart from and earlier than the conventional medical approach used in the United States. Examples of alternative medical systems that have developed in Western cultures include homeopathic medicine and naturopathic medicine.
Mind-body medicine uses a variety of techniques designed to enhance the mind's capacity to affect bodily function and symptoms. Some techniques that were considered to be CAM in the past have become mainstream (for example, patient support groups and cognitive-behavioral therapy). Other mind-body techniques are still considered CAM, including meditation, prayer, mental healing, and therapies that use creative outlets such as art, music, or dance.
Biologically based therapies
Biologically based therapies in CAM use substances found in nature, such as herbs, foods, and vitamins. Some examples include dietary supplements, herbal products, and the use of other so-called natural but as yet scientifically unproven therapies (for example, using shark cartilage to treat cancer).
Manipulative and body-based methods
Manipulative and body-based methods in CAM are based on manipulation and/or movement of one or more parts of the body. Some examples include chiropractic or osteopathic manipulation and massage.
Energy therapies involve the use of energy fields. They are of two types, described below.
Biofield therapies are intended to affect energy fields that purportedly surround and penetrate the human body. The existence of such fields has not yet been scientifically proven. Some forms of energy therapy manipulate biofields by applying pressure and/or manipulating the body by placing the hands in, or through, these fields. Examples include qi gong, Reiki, and therapeutic touch.
Bioelectromagnetically based therapies involve the unconventional use of electromagnetic fields, such as pulsed fields, magnetic fields, or alternating-current or direct-current fields.
Acupuncture describes a family of procedures involving stimulation of anatomic points on the body by a variety of techniques. American practices of acupuncture incorporate medical traditions from China, Japan, Korea, and other countries. The acupuncture technique that has been most studied scientifically involves penetrating the skin with thin, solid, metallic needles that are manipulated by the hands or by electrical stimulation.
Aromatherapy involves the use of essential oils (extracts or essences) from flowers, herbs, and trees to promote health and well-being.
Chiropractic is a CAM alternative medical system. It focuses on the relation between bodily structure (primarily that of the spine) and function and how that relation affects the preservation and restoration of health. Chiropractors use manipulative therapy as an integral treatment tool.
Dietary supplements are products (other than tobacco) taken by mouth that contain a "dietary ingredient" intended to supplement the diet. Dietary ingredients may include vitamins, minerals, herbs or other botanicals, amino acids, and substances such as enzymes, organ tissues, and metabolites. Dietary supplements come in many forms, including extracts, concentrates, tablets, capsules, gel caps, liquids, and powders.
Healing rituals involve a type of folk medicine that have persisted since the beginning of culture and have flourished long before the development of conventional medicine. Folk healers usually participate in a training regimen of observation and imitation, with healing often considered a gift passed down through several generations. Folk healers may use a range of remedies including prayer, healing touch or lying on of hands, charms, herbal teas or tinctures, magic rituals, and others. They are found in all cultures and operate under a variety of names and labels.
Homeopathic medicine is a CAM alternative medical system. In homeopathic medicine, there is a belief that "like cures like," meaning that small, highly diluted quantities of medicinal substances are given to cure symptoms, when the same substances given at higher or more concentrated doses would actually cause those symptoms.
Home remedies are nonvitamin, nonmineral natural products prepared at home, taken by mouth, and contain a dietary ingredient intended to supplement the diet or cure a certain ailment other than vitamins and minerals. Garlic, for example has been used to treat fevers, sore throat, digestive ailments, and so forth.
Hypnosis is an altered state of consciousness characterized by increased responsiveness to suggestion. This state is attained by first relaxing the body, then shifting the client's attention toward a narrow range of objects or ideas as suggested by the therapist. The procedure is used to access various levels of the mind to effect positive changes in a person's behavior and to treat numerous health conditions.
Massage therapy involves pressing, rubbing, and otherwise manipulating muscle and connective tissue to enhance the function of those tissues and promote relaxation and well-being.
Meditation involves mental calmness and physical relaxation achieved by suspending the stream of thoughts that normally occupy the mind. Generally performed once or twice a day for approximately 20 minutes at a time, meditation is used to reduce stress, alter hormone levels, and elevate one's mood.
Osteopathic medicine is a form of conventional medicine that in part emphasizes diseases arising in the musculoskeletal system. There is an underlying belief that all of the body's systems work together, and disturbances in one system may affect function elsewhere in the body. Some osteopathic physicians practice osteopathic manipulation, a full-body system of hands-on techniques to alleviate pain, restore function, and promote health and well-being.
Qi gong is a component of traditional Chinese medicine that combines movement, meditation, and regulation of breathing to enhance the flow of qi (an ancient term given to what is believed to be vital energy) in the body, improve blood circulation, and enhance immune function.
Therapeutic touch is derived from an ancient technique called laying-on of hands. It is based on the premise that it is the healing force of the therapist that affects the patient's recovery; healing is promoted when the body's energies are in balance; and, by passing their hands over the patient, healers can identify energy imbalances.
Yoga is a combination of breathing exercises, physical postures, and meditation. Yoga calms the nervous system and balances the body, mind, and spirit. Yoga has been used to lower blood pressure, reduce stress, and improve coordination, flexibility, concentration, sleep, and digestion.
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Jocelyn Y. Ang, MD, Shibani Ray-Mazumder, SCD, Sharon A. Nachman, MD, SCD, Chokechai Rongkavilit, MD, Basim I. Asmar, MD, and Clement L. Ren, MD
From the Division of Pediatric Infectious Diseases, Division of Pediatric Pulmonary, Allergy, and Immunology, Children's Medical Center, The State University of New York at Stony Brook, Stony Brook, New York, and the Division of Infectious Diseases, Children's Hospital of Michigan, Wayne State University, Detroit, Michigan.
Reprint requests to Basim I. Asmar, MD, Children's Hospital of Michigan, Division of Infectious Diseases, 3901 Beaubien Boulevard, Detroit, MI 48201. Email: firstname.lastname@example.org
Accepted April 21, 2005.
RELATED ARTICLE: Key Points
* Complementary and alternative medicine (CAM) usage in children with human immunodeficiency virus (HIV) infection and asthma and well children was relatively high in our pediatric patient population.
* Parents/guardians of HIV-infected children demonstrated the highest interest in CAM therapy.
* CAM usage was not higher in HIV-infected children compared with well children and children with a less severe chronic condition such as asthma.
* Level of education, employment, and ethnicity appear to influence the use of CAM.
Table 1. Demographic characteristics of the three study groups Healthy HIV Asthma child (n = 46) (n = 53) (n = 53) P Parents/guardian Male 9% 0% 0% Female 91% 100% 100% Employment <0.01 Working full-time 17% 43% 45% Working part-time 9% 25% 15% Unemployed 74% 32% 40% Race <0.01 White 24% 66% 55% Hispanic 9% 13% 9% Black 44% 4% 21% Asian 0% 4% 6% Interracial 23% 13% 9% Education 0.01 College education 20% 43% 43% High school 36% 40% 36% No high school 44% 17% 21% Medical insurance <0.01 Private 15% 74% 62% Medicaid 84% 25% 37% Marital status 0.32 Married 61% 71% 55% Unmarried 39% 29% 45% Patients Age (yr) [+ or -] SD 8 [+ or -] 7 [+ or -] 7 [+ or -] 0.75 4 4 4 Table 2. Overall prevalence of complementary and alternative medicine modalities used in the three study groups (a) Healthy HIV Asthma child (n = 46) (n = 53) (n = 53) Overall Prevalence of CAM (b) 22% 25% 38% Alternative medical systems Homeopathy 1 (2.2%) 1 (1.9%) 0 Mind-body interventions Prayer 38 (82.6%) 33 (62.3%) 38 (71.1%) Healing rituals 0 0 1 (1.9%) Meditation 3 (6.5%) 2 (3.8%) 6 (11.3%) Biologically-based therapies Aromatherapy 11 (23.9%) 9 (17%) 12 (22.6%) Home remedies 13 (28.3%) 11 (20.8%) 12 (22.6%) Herbal remedies 5 (10.9%) 7 (13.2%) 17 (32.1%) Vitamins (including 34 (73.9%) 40 (75.5%) 43 (81.1%) minerals and antioxidants) Manipulative and body-based methods Massage therapy 2 (4.3%) 5 (9.4%) 7 (13.2%) Chiropractic care 2 (4.3%) 4 (7.5%) 2 (3.8%) Energy therapies Therapeutic touch 0 1 (1.9%) 3 (5.7%) Acupuncture 0 0 1 (1.9%) (a) CAM, complementary and alternative medicine. (b) P = 0.042; Healthy child group versus HIV and asthma groups combined. Table 3. Parents/guardians' attitudes toward complementary and alternative medicine among the three study groups (a) Healthy HIV Asthma child (n = 46) (n = 53) (n = 53) P Want CAM for their child 91% 67% 75% 0.02 Believe CAM expensive Yes 78% 60% 57% <0.01 No 4% 9% 28% Don't know/not sure 17% 30% 16% Fear of CAM side effects 11% 78% 11% 0.03 Believe CAM affect QOL 0.01 Yes 65% 40% 69% No 2% 13% 4% Others 33% 47% 27% Believe CAM cost-effective <0.01 Yes 57% 68% 77% No 9% 17% 18% Others 35% 15% 6% Told providers 50% 75% 50% NS (a) CAM, complementary and alternative medicine; QOL, quality of life; NS, nonsignificant.
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|Title Annotation:||Original Article|
|Author:||Ren, Clement L.|
|Publication:||Southern Medical Journal|
|Date:||Sep 1, 2005|
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