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. 2009 Nov;23(11):965–971. doi: 10.1089/apc.2009.0134

Disclosure of Complementary and Alternative Medicine Use to Health Care Providers among HIV-Infected Women

Chenglong Liu 1,✉, Yang Yang 2, Stephen J Gange 3, Kathleen Weber 4, Gerald B Sharp 5, Tracey E Wilson 6, Alexandra Levine 7, Esther Robison 8, Lakshmi Goparaju 1, Monica Gandhi 9, Dan Merenstein 10
PMCID: PMC2801553  NIHMSID: NIHMS160783  PMID: 19821723

Abstract

To determine prevalence and predictors of complementary and alternative medicine (CAM) use disclosure to health care providers and whether CAM use disclosure is associated with highly active antiretroviral therapy (HAART) adherence among HIV-infected women, we analyzed longitudinal data collected between October 1994 and March 2002 from HIV-infected CAM-using women enrolled in the Women's Interagency HIV Study. Repeated measures Poisson regression models were constructed to evaluate associations of selected predictors with CAM use disclosure and association between CAM use disclosure and HAART adherence. A total of 1377 HIV-infected women reported CAM use during study follow-up and contributed a total of 4689 CAM-using person visits. The overall prevalence of CAM use disclosure to health care providers was 36% across study visits. Women over 45 years old, with a college education, or with health insurance coverage were more likely to disclose their CAM use to health care providers, whereas women identified as non-Hispanic Black or other ethnicities were less likely to communicate their CAM usage. More health care provider visits, more CAM domains used, and higher health care satisfaction scores had significant relationships with increased levels of CAM use disclosure. Restricting analysis to use of herbal or nonherbal medications only, similar results were obtained. Compared to other CAM domains, mind–body practice had the lowest prevalence of CAM use disclosure. Additionally, CAM use disclosure was significantly associated with higher HAART adherence. From this study, we showed that a high percentage of HIV-infected women did not discuss their CAM use with health care providers. Interventions targeted towards both physicians and patients may enhance communication of CAM use, avoid potential adverse events and drug interactions, and enhance HAART adherence.

Introduction

Therapeutic approaches to treating disease or illness that fall outside of the realms of conventional medicine are called complementary and alternative medicine (CAM). In the early years of the HIV epidemic, CAM use was prevalent because few standard treatments were available and the available options often had negative side effects.1,2 With widespread use of antiretroviral drugs, HIV disease has been transformed into a manageable chronic disease in many developed countries. However, CAM is still used more often in the HIV-infected individuals than non-HIV–infected individuals3 and CAM usage is still an integral part of HIV therapy as it may be used to reduce disease symptoms or alleviate side effects from conventional treatments.4 The usage of CAM ranges between 60% and 90% among HIV-infected individuals in the era of highly active antiretroviral therapy (HAART),5–7 with women reporting higher CAM usage8 and CAM being used almost exclusively as adjunct rather than as alternative therapies to the conventional therapies.3,9

While CAM use can benefit HIV-infected patients,4 potential adverse events or unfavorable interactions with pharmacologic therapies do exist.10–13 However, not all CAM users communicate their CAM usage with health care providers. One study among HIV-infected individuals in the United States found that approximately one half of the patients who used any type of CAM had not discussed it with their health care providers. 9 Another recent study found only 16% of HIV-infected CAM users in Uganda informed their conventional health care providers about their usage.14 Because of high prevalence of CAM use and multiple medications in the HIV-infected individuals, possible CAM adverse events and interactions with HIV therapies should be closely monitored by physicians. In addition, given the extreme importance of 95% or more level of HAART adherence,15 it is of great concern whether nondisclosure of CAM use negatively affects HAART adherence. Unfortunately, very few studies have been conducted among HIV-infected individuals to examine barriers to physician and patient communication of CAM use14 and to our knowledge no study has been carried out to examine association of CAM use disclosure with HAART adherence.

Our study aimed to determine the extent and predictors of CAM use disclosure to health care providers among HIV-infected women and whether CAM use disclosure was associated with HAART adherence, using data from the Women's Interagency HIV Study (WIHS), the largest HIV/AIDS prospective cohort study of women in the United States.

Methods

Women's Interagency HIV Study

The WIHS is an ongoing longitudinal study designed to investigate the natural and treated history of HIV disease among women. Its design has been detailed previously.16 Briefly, 2056 HIV-infected and 569 HIV-uninfected women were enrolled between October 1, 1994 and November 30, 1995 from six study sites in Chicago, Los Angeles, San Francisco, Washington, D.C. and Brooklyn and Bronx in New York City. Standardized face-to-face interviews were conducted semiannually to collect data on participants' sociodemographic characteristics, behaviors, health care utilization, and medication use. Additionally, physical and obstetric/gynecologic examinations were performed and biologic specimens were collected. The study protocol was approved by an Institutional Review Board at each site and all participants gave informed consent.

In the WIHS, information regarding use of CAM therapies, disclosure of CAM use to health care providers and patient's satisfaction with health care was systematically collected at each odd-numbered visit from October 1994 until March 2002 at all sites except for the Brooklyn site because it chose not to collect these data. For this study, we restricted our analyses to study visits where the HIV-infected participants used at least one CAM modality during that study visit interval. The index visit was defined as the first visit a participant reported use of CAM during the follow-up period.

Outcome definition

The participants were asked whether they used certain CAM modalities in the past 6 months and were asked to list other specific CAM modalities they used in open-ended question manner. The CAM modalities reported in this study are detailed in Table 1, which included St. John's wart, ginger, ginseng, algae, zinc, acupuncture/acupressure, yoga, and biofeedback, etc. These specific CAM modalities were then categorized into four CAM domains, i.e., herb medication, non-herb medication, mind–body practice, and body-based manipulative practice. For our analysis, multivitamins, folic acid, and antioxidants were not included in our definition of CAM because HIV primary care providers may routinely prescribe these for their patients. In addition, we also excluded regular exercise from body-based manipulative practice. Among respondents who reported having used at least one form of CAM since the last study visit, we then asked them whether they had discussed this use with their health care providers. The primary outcome was self-reported disclosure of CAM use to health care provider which was dichotomized as “yes/no.” The secondary outcome was self-reported 95% or more level of HAART adherence in the past 6 months, with HAART being defined under the guideline by the DHHS/Kaiser Panel.17

Table 1.

List of Complementary and Alternative Medicine Modalities Reported by HIV-Infected Women in the WIHS from October 1994 to March 2002

CAM domains CAM modalities
Herb medications St. John's wort (Hypericin)
  Herbal preps
  Melatonin
  Herbs (Chinese/Asian, Native American, South American, Indian/Ayurvedic)
  Cat claw
  Chamomile
  Combination Chinese herbs
  Dandelion
  Echinacea (with or without goldenseal)
  Garlic
  Ginkgo biloba
  Ginger
  Ginseng
  Goldenseal
  Milk thistle
  Valerian
  Woodroot
  Evening primrose oil
  Red clover
  Black cohosh
Non-herb medications DHEA (dehydroepiandrosterone)
  Coenzyme Q-10
  Niacin (Niaspan)
  NAC (N-acetyl-cysteine)
  Amino acids (glutamine)
  Acidophilus
  Alfalfa
  Algae (blue algae, blue-green algae)
  Aloe vera
  Astragalus
  Bee pollen
  beta-carotene
  Chromium
  Cranberry
  Megadose vitamins
  Omega-3 type oils
  Protein powder
  Spirulina
  Thymus glandular
  Zinc
  Lecithin
  Cod liver oil
  l-carnitine
  Soy
  Flaxseed (linseed)
  Kemron
  Thymus extract
  Peptide t
  Special diet for health
  Trental
  Enzyme therapies (plant or pancreatic)
  Flower remedies
  Homeopathic remedies
Body-based practices Acupuncture
  Acupressure
  Massage
  Reflexology therapy
Mind–body practices Spiritual health therapy
  Hypnosis
  Biofeedback
  Image therapy
  Yoga
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CAM, complementary and alternative medicine; WIHS, Women's Interagency HIV Study.

Predictors

Based on prior studies9,14,18,19 and data available in WIHS, the following visit-specific time-varying variables (unless otherwise stated) were selected as predictors for CAM disclosure: (1) sociodemographic characteristics included age in years (<35, 35–45 and >45), racial/ethnic identification (non-Hispanic Black, non-Hispanic White, Hispanic and others), and educational level (less than high school, some high school, or college and above) at study index visit, as well as annual income (>$12,000 or not), employment status, and any medical insurance coverage at each visit; (2) health care utilization indicators included number of health care provider visits (<2, 2–3, 4–5, and 6+), any hospitalization, number of CAM domains (1, 2, 3, and 4) and different type of CAM domain used since last visit; (3) functional status of participants consisted of depressive symptoms (measured by using the Center for Epidemiologic Studies Depression Scale [CESD],20 with a score 16 or higher defined as depression) and overall health-related quality of life (QOL, measured on a scale from 0 to 100 using a modified version of the MOS-HIV21 and was categorized using tertiles); (4) patient satisfaction was evaluated using the RAND Patient Satisfaction Questionnaire Short Form (PSQ-18), which has demonstrated validity and reliability among individuals with HIV/AIDS.22,23 We used the general satisfaction domain (categorized by quartiles) of this instrument to represent participants' overall satisfaction with health care received; (5) clinical variables included CD4+ T cell counts (measured using standardized three or four color flow cytometry24), HIV RNA level (measured using the isothermal nucleic acid sequence based amplification method [bioMérieux, Boxtel, NL]), number of HIV-related symptoms (including fever, memory/ concentration problem, diarrhea, numbness /tingling/burning rash, unintentional weights loss, difficulty with mental tasks, drenching night sweats, and divided into four categories 0, 1, 2, >2), clinical AIDS diagnosis (1993 criteria25), as well as use of antiretroviral therapy (no therapy, non-HAART therapy, and HAART).

Statistical methods

To assess associations of the selected predictors with disclosure of CAM use after taking into account within individual correlation, we used a repeated-measures Poisson regression model (generalized estimating equations method), rather than logistic regression model because CAM use disclosure was not a rare event in our study and estimated odds ratio from logistic regression might be a biased estimate of risk ratio.26 Univariate associations with CAM disclosure were examined first and only variables with significant associations (p < 0.05) were included into the multivariate models to assess their independent associations with disclosure of CAM use. Because use of herbal and non-herbal medications may pose more risk of interaction with antiretroviral therapy than use of other CAM modalities, we conducted a separate analysis to assess whether different predictors are associated with disclosure prevalence of herbal and non-herbal medications. To examine whether types of CAM domains were associated with different disclosure level, a separate multivariate model was fit by restricting analysis to study visits when the participants used only one type of CAM domain and by including the same set of univariately significant predictors as stated above. To assess association of CAM use disclosure with HAART adherence, the same repeated measures Poisson model was used, with the identified significant predictors of CAM use disclosure as covariates in the multivariate model. All analyses were conducted using SAS 9.01 (SAS Institute, Cary, NC).

Results

Participant characteristics

One thousand seven hundred forty-five HIV-infected WIHS women were asked their CAM use history from October 1994 to March 2002. A total of 1377 (79%) reported using CAM at least once during this period; these women constituted the current study population and contributed a total of 4689 CAM-using person visits. At the index visit, 16% of the study subjects were older than 45 years and 31% of them had less than a high school education. Among these participants, approximately 54% were non-Hispanic Black and 21% were Hispanic. Of these women, about 40% had been diagnosed with AIDS and 65% used antiretroviral therapy.

Prevalence of CAM use disclosure

During follow-up visits, the participants used a variety of CAMs, including some CAM medications with confirmed (such as St. John's wort and garlic10,11) or potential (such as ginkgo biloba and echinacea27) adverse events or interaction with antiretroviral therapies. The average prevalence of CAM use disclosure was 36% across visits (range, 29%–45%) but remained relatively stable over time, which includes both pre- and post-HAART eras. Participants with younger age, non-White race, lower education, lower income, no insurance coverage, or depression symptom had lower prevalence of CAM use disclosure, whereas women with more health care provider visits, higher satisfaction with received health care, or using HAART had higher prevalence of CAM use disclosure (Table 2). The disclosure prevalence also varied by number of CAM domains used, with 25% for using one CAM domain only and 61% for using all four CAM domains. Restricting analyses to visits where the participants were using only one CAM domain, women using mind–body practice had the lowest disclosure level (18%), while those using non-herbal CAM medication had the highest disclosure level (37%).

Table 2.

Predictors of Complementary and Alternative Medicine Use Disclosure to Health Care Providers among HIV-Infected Women

 
  
  
  
 Statistical associations
 
  
  
  
 Univariate
 Multivariate
Variable Study subjects n = 1377 Person visits n = 4689 Disclosure prevalence % PR 95% CI PR 95% CI
Social demographics
 Age
 <35 472 1066 29.74 1.00   1.00  
 35–45 682 2503 35.96 1.21 (1.06, 1.38)a 1.13 (0.99, 1.28)
 >45 223 1099 41.95 1.41 (1.22, 1.63)b 1.25 (1.09, 1.44)a
Ethnicity
 White, non-Hispanic 301 1109 42.83 1.00   1.00  
 Black, non-Hispanic 741 2461 33.56 0.78 (0.70, 0.88)b 0.87 (0.78, 0.97)c
 Hispanic 294 953 35.26 0.85 (0.73, 0.98)a 0.94 (0.81, 1.08)
 Other 41 145 28.28 0.66 (0.45, 0.97)c 0.70 (0.50, 0.99)c
Education
 Less than high school 430 1286 29.24 1.00   1.00  
 High school 437 1351 34.12 1.17 (1.01, 1.35)c 1.05 (0.91, 1.20)
 Some college 510 2031 41.41 1.41 (1.25, 1.61)b 1.15 (1.01, 1.32)c
Income > $12,000 per year 529 2107 37.97 1.10 (1.00, 1.20)c 0.98 (0.89, 1.07)
Currently Employment 322 1480 38.04 1.09 (0.98, 1.20)    
Insurance 1144 4125 37.31 1.45 (1.22, 1.72)b 1.26 (1.06, 1.48)a
Health care utilization
Being hospitalized 296 920 37.72 1.06 (0.96, 1.17)    
Number of health care provider visits
 <2 971 1447 28.82 1.00   1.00  
 2–3 147 1135 35.95 1.25 (1.11, 1.40)a 1.21 (1.07, 1.35)a
 4–5 85 685 38.83 1.35 (1.18, 1.53)b 1.26 (1.11, 1.43)a
 6+ 174 1401 41.90 1.45 (1.31, 1.62)b 1.34 (1.20, 1.49)b
Number of CAM modalities
 1 769 2206 24.71 1.00   1.00  
 2 331 1267 38.20 1.55 (1.37, 1.71)b 1.50 (1.35, 1.66)b
 3 182 777 50.45 2.04 (1.83, 2.28)b 1.96 (1.76, 2.19)b
 4 95 418 61.48 2.49 (2.22, 2.81)b 2.35 (2.09, 2.64)b
Functional status
Quality of life
 <52 500 1542 35.73 1.00      
 52–73 462 1526 35.52 0.99 (0.89, 1.11)    
 >73 411 1596 36.59 1.02 (0.91, 1.15)    
Depression 730 2270 33.74 0.89 (0.81, 0.97)c 0.98 (0.90, 1.07)
Health care general satisfaction score
 <3.0 258 745 30.07 1.00   1.00  
 3.0–4.0 311 1015 34.19 1.14 (0.98, 1.31) 1.19 (1.03, 1.37)c
 4.0–4.5 447 1609 35.92 1.19 (1.04, 1.37)c 1.27 (1.11, 1.45)a
 >4.5 350 1284 40.89 1.36 (1.18, 1.57)b 1.39 (1.22, 1.59)b
Clinical disease stages
AIDS diagnosis 555 2271 37.65 1.10 (0.99, 1.21)    
CD4+T cell count (per mm3)
 >500 348 1398 36.05 1.00      
 350–500 279 995 34.97 0.97 (0.86, 1.10)    
 <350 717 2240 36.47 1.01 (0.91, 1.13)    
HIV viral load (per μL)
 <81 83 898 38.64 1.00      
 81–4000 487 1865 35.44 0.92 (0.82, 1.03)    
 >4000 785 1882 35.23 0.91 (0.80, 1.03)    
Number of HIV-related symptoms
 0 564 2095 34.94 1.00      
 1 321 1094 37.48 1.07 (0.97, 1.19)    
 2 208 670 37.31 1.06 (0.94, 1.21)    
 >2 283 808 35.40 1.01 (0.89, 1.15)    
Antiretroviral therapy
 No therapy (reference) 486 1522 33.71 1.00   1.00  
 Non-HAART therapy 735 1416 35.45 1.05 (0.94, 1.18) 1.09 (0.98, 1.22)
 HAART therapy 155 1729 38.35 1.13 (1.02, 1.27)c 1.01 (0.91, 1.12)
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a

p < 0.01.

b

p < 0.0001.

c

p < 0.05.

CAM, complementary and alternative medicine; PR, prevalence ratio; HAART, highly active antiretroviral therapy; CI, confidence interval.

Predictors of CAM use disclosure

A number of predictors were significantly associated with disclosure of CAM use in univariate analysis (Table 2). With these predictors included in the multivariate model, non-Hispanic Black and other ethnicity women were less likely to disclose CAM use while women over 45 years old, with some college education or health insurance were more likely to disclose. In addition, satisfaction with health care, number of CAM domains used, and number of health care providers visited all had significant dose-response relationships with CAM use disclosure. Restricting analysis to use of herbal and nonherbal medications only, similar results were obtained; all significant predictors in the multivariate analysis with all CAM domains included (original model, see Table 2) remained significant in this separate analysis except for insurance coverage, which became insignificant (prevalence ratio [PR], 1.18; 95% confidence interval [CI], 0.98–1.41; p = 0.075) and such slight change might be caused by reduced sample size. Furthermore, compared to mind–body practice, use of herbal medication (PR, 1.51; 95% CI, 1.18–1.93; p = 0.0011), non-herbal medication (PR, 1.79; 95% CI, 1.48–2.19; p < 0.001) or body-based manipulative practice (PR, 1.67; 95% CI, 1.37–2.05; p < 0.0001) was significantly related to higher CAM use disclosure to health care providers, after restricting to visits when only one CAM use was reported and adjusting for the same set of univariately significant covariates as described in Table 2.

Association between CAM use disclosure and HAART adherence

Univariately, CAM use disclosure was significantly associated with HAART adherence (PR, 1.08; CI, 1.01–1.15; p = 0.0252). After adjusting for the above identified significant CAM use disclosure predictors that were also associated with HAART adherence in the multivariate model, the association remained significant (PR, 1.07; 95% CI, 1.00–1.14; p = 0.0415).

Discussion

Our data showed that 79% of HIV-infected women in the WIHS reported CAM use. However, the prevalence of CAM use disclosure averaged only 36%, which was somewhat in between those previously reported.9,14 In addition, the CAM use disclosure prevalence remained stable over study follow-up time, which included both pre- and post-HAART eras. Given that some HIV-infected WIHS women were using certain CAM medications with confirmed or potential adverse events or interaction with antiretroviral therapies, and that patient's knowledge about safety of CAM is usually limited,28 such a low prevalence of CAM use disclosure is disturbing. In addition, we showed that CAM use disclosure was related to higher HAART adherence, which is congruent with findings that better physician–patient relationship, including better communication, can increase adherence to HAART.29 Therefore, physician–patient communication of CAM use is of critical importance in clinical management of HIV infection, and identification of important predictors of CAM use disclosure is an essential first step for possible improvement.

Two studies have examined predictors of CAM use disclosure among HIV-infected individuals before. As a byproduct of their research on CAM use and substitution for conventional therapy, Hsiao et al.9 found that Latino, no insurance, perceptions of negative attitude of providers toward CAM use, and patients' negative attitude toward antiretroviral medications were individually associated with nondisclosure of CAM use. Unfortunately the independent associations of these predictors were not further evaluated in the multivariate analysis. Recently, Langlois-Klassen et al showed that higher education and more HIV-related symptoms were independently associated with higher CAM use disclosure among HIV-infected individuals in west Uganda.14 Our analysis confirmed the roles of education and insurance coverage in CAM use disclosure, but had different results for race and number of HIV-related symptoms. These discrepancies might be largely due to different study populations used in examining the association; Hsiao et al.9 included only patients using CAM with potential adverse events, while the HIV-infected individuals in Africa were simply different from those in the North America because of different prevalence of antiretroviral therapy usage.

From our study, individuals who had more visits to health care providers or used more CAM domains were more likely to disclose their CAM usage. Our findings were similar to those from a study among patients with rheumatologic disease, in which patients using 3 or more types of CAM or with more physician visits were more likely to disclose usage.19 Health care utilization indicators generally represent disease severity and/or individual health care seeking preference. As we adjusted disease stages in our analyses, these indicators were more likely reflective of the latter. Patients utilizing more health service might be more health conscious; they might be more willing to or might have more chances of communicating with their health care providers.

Although previous studies showed that individuals used CAM not simply because of dissatisfaction with conventional medicine,30,31 the current study revealed that higher satisfaction with received health care was significantly related to higher disclosure of CAM use. Our results were different from those reported among rheumatology patients, where no significant association was demonstrated.19 Possible explanations for the difference might include different provider satisfaction forms used, different study settings, or distinct disease populations. In the RAND PSQ-18 form, satisfaction with physician communication is an important dimension, which might help explain our findings.

In the HAART era, maintaining high adherence to HAART and maximizing quality of life are two major goals in the management of HIV-infected patients. From our analysis, CAM use disclosure is related to both goals. According to the above identified predictors, intervention programs may be developed toward both patients and physicians to improve CAM use disclosure. From the patients' perspective, targeted education programs toward those who are young, minority, with lower education or no insurance coverage should be carried out to increase their health consciousness and awareness of the importance of disclosing CAM use to health care providers.32

Given the demonstrated effectiveness of HAART and potential risk associated with CAM use nondisclosure, physicians should take a leading role in discussing with patients about CAM usage. Specifically, effective intervention programs should be developed for physicians to increase their knowledge about CAM, take initiative in communicating CAM use and incorporate CAM use inquiry into routine inquiries about patients' medical histories, antiretroviral therapy adherence and other aspects of care. For instance, as evidenced by a previous study in Canada, asking specifically about CAM use by physicians was a strong predictor for CAM use disclosure.18

Compared to the two previous studies, our study has some additional strength. Both studies utilized a cross-sectional design. Hsiao et al did not examine the independent associations of the predictors with CAM use disclosure, while the study by Langlois-Klassen et al.14 used a relatively small number of patients attending medical clinics. Our study adopted a prospective cohort design, had a large sample size and thus improved external validity. However, some limitations in this study should also be noted. First, we used self-reported disclosure prevalence and HAART adherence. However, previous WIHS research has shown self-reported outcomes such as medication adherence to be consistent with objective measures of HIV outcomes, such as CD4+ T cell count, and HIV viral load.33 Second, we did not evaluate information on comorbidities, which could affect both CAM use and disclosure of CAM use to health care providers. However, certain covariates such as functional status might reflect some effects of potential comorbidities. Third, although we tried to be inclusive in assessing predictors for disclosure of CAM use, some unmeasured predictors might not have been included.

Conclusion

HIV-infected women in the WIHS had a high prevalence of CAM use, but a low prevalence of disclosing it to their health care providers. We identified important predictors for CAM use disclosure in this study and our findings have critical clinical implications because possible interventions based on these predictors may help improve CAM use disclosure, avoid adverse events and/or drug interactions, and enhance HAART adherence.

Acknowledgments

Data in this manuscript were collected by the Women's Interagency HIV Study (WIHS) Collaborative Study Group with centers (Principal Investigators) at New York City/Bronx Consortium (Kathryn Anastos); Brooklyn, New York (Howard Minkoff ); Washington, D.C. Metropolitan Consortium (Mary Young); The Connie Wofsy Study Consortium of Northern California (Ruth Greenblatt); Los Angeles County/Southern California Consortium (Alexandra Levine); Chicago Consortium (Mardge Cohen); Data Coordinating Center (Stephen Gange). WIHS is funded by the National Institute of Allergy and Infectious Diseases with supplemental funding from the National Cancer Institute and the National Institute on Drug Abuse (UO1-AI-35004, UO1-AI-31834, UO1-AI-34994, UO1-AI-34989, UO1-AI-34993, and UO1-AI-42590). Funding is also provided by the National Institute of Child Health and Human Development (UO1-HD-32632) and the National Center for Research Resources (MO1-RR-00071, MO1-RR-00079, MO1-RR-00083).

Author Disclosure Statement

No competing financial interests exist.

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