Over 50% of HIV-positive people use complementary or alternative medicine, yet many do not discuss use with their HIV doctor, according to a large US study published in the June 1st 2003 edition of the Journal of Acquired Immune Deficiency Syndromes. However the study found that few patients were using complementary or alternative medicine in place of HAART.
Several earlier studies have found that up to 60% of HIV-positive patients use some kind of alternative therapy, including herbal medicine, the potential dangers of which were demonstrated by studies showing that the herbal antidepressant St John’s wort could reduce the amount of indinavir in the blood and that large doses of garlic could have a similar affect on saquinavir.
The study involved over 2,400 patients enrolled in the US HIV Cost and Services Utilization Study (HCSUS), which is representative of HIV patients in the US. Investigators wished to establish the prevalence of complementary therapies’ use, the potential for side-effects, and the extent to which complementary and alternative therapies were being substituted for HAART. In addition, the investigators tried to establish which patient groups were most likely to use complementary and alternative approaches to the management of their HIV disease.
Baseline demographic and clinical information was obtained from patients in the first half of 1996. At follow-up interviews over six months later, patients were asked if they had used complementary of alternative therapies since the last interview, including massage, acupuncture, self-help, herbal medicine and unlicensed and underground drugs.
For each alternative therapy a patient used they were asked if this was something they had used in place of conventional medical treatment or in addition to their conventional HIV treatment. Patients were also asked if they had discussed the use of complementary and alternative treatments with their doctor, their doctor's reaction if they had done so, and if they hadn’t discussed their use what they thought their doctor’s reaction would be.
Investigators also tried to establish which factors predicted complementary and alternative therapy use in the cohort. These included demographic background, health status and attitudes and health beliefs.
The majority of patients (53%) reported using at least one complementary or alternative treatment in the six months of the study. Amongst patients with CD4 cell counts below 500 cells/mm3, 3% reported using these therapies in place of conventional HIV treatments.
Over 50% of patients who used alternative and complementary therapies had not discussed their use with their doctor, including a third of patients who were using this approach to help manage the side-effects of HIV treatments.
White, well-educated, wealthy gay men were the group of patients most likely to report any kind of complementary and alternative therapy.
When the investigators looked at the use of alternative therapies to help alleviate side-effects they found that a greater desire for medical information (OR 1.37, 95% CI, 1.12 – 1.68), and involvement in medical decision making (OR 1.52, 95% CI, 1.21 – 1.89) predicted such use. In addition, patients who believed that anti-HIV drugs were not worth taking were also more likely to report the use of complementary and alternative approaches (‘probably not worth taking’, OR 1.36, 95% CI, 1.04 – 1.79; ‘definitely not worth taking’, OR 1.46, 95% CI 0.94 – 2.25).
Amongst patients substituting complementary and alternative treatments for HAART, a greater desire for involvement in treatment decisions was predictive (OR 1.78, 95% CI 1.00 – 3.18). In addition, negative attitudes towards the effectiveness of HAART were also prevalent in this group (‘probably not worth taking’, OR 2.93, 95% CI 1.31 – 6.55; ‘definitely not worth taking’, OR 7.77, 95% CI 3.18 – 19.0).
The investigators note 27% of patients who did not discuss the use of complementary and alternative medicine with their doctor thought that their doctor would disapprove of such therapies. However, only 9% of those who did discuss such treatments with their doctor encountered disapproval. “This suggested that lack of discussion with physicians was partly mediated by the perception that physicians disapprove of c(omplementary) and a(lternative) m(edicine).” The investigators suggest “improved physician understanding about patients’ need for control over their own health and the benefits and risks of CAM in HIV care may open channels of communication.”
Many patients in the study were using complementary therapies to reduce side-effects. However, the investigators note that many alternative treatments have side-effect profiles similar to those of HIV drugs and that patients using both antiretrovirals and alternative medicine “may wrongly attribute their adverse effects to the antiretrovirals. Clinicians who are not aware of their patients CAM use may change antiretroviral regimens unnecessarily.”
The study was conducted in 1996 and 1997 when the use of HAART was first becoming widespread. The investigators highlight this as a possible limitation of the study as “some patients might not have been aware of” HAART’s “ability to significantly improve their quality of life and life expectancy.”
A recommendation that doctor’s should openly ask their patients if they are using alternative or complementary therapies concludes the study.