Why Patients (and Their Doctors) Choose Not to Start HIV Treatment

People living with HIV choose not to start antiretroviral therapy (ART) mainly because they feel no symptoms and believe treatment is not needed, according to study results presented at EACS 2013 in Brussels, Belgium. On the other side of the coin, physicians are hesitant to start their patients on HIV treatment, regardless of CD4+ cell count and guidelines, mainly because they either perceive their patients as being too depressed or because they feel they have not known the patient long enough, the study found.

Jan Fehr, M.D., presented results from a survey of 508 HIV-infected, treatment-naive patients and their 114 treating physicians from 34 sites across Europe and Australia. Between December 2011 and October 2012, each patient was given a 90-item questionnaire to gauge his or her beliefs on stages of readiness, perceptions around 11 different aspects of HIV treatment and susceptibility to depression and harmful alcohol use. Those patients' physicians were then given questionnaires to gauge their beliefs on stages of readiness and reasons for not starting a patient on medications. In addition, they were asked to assess their patients' responses.

All patients had been under the care of their surveyed physician for at least 180 days. The median age was 37 and 84% were male. About 67% had been diagnosed between one and four years ago, while 28% had been diagnosed five or more years ago. In terms of transmission route, 67% contracted the virus via homosexual sex, 25% via heterosexual sex and 6% via needle sharing. The median viral load was 10,000 copies/mL.

The patients were broken down into three groups based on CD4+ cell count: 8% had below 350 cells/mm3, 27% had between 350 and 499, and 65% had greater than or equal to 500.

Generally, the physicians were well experienced in providing care for HIV: 59% had 10 or more years of experience, 19% had five to nine years of experience and 18% had one to four years of experience. Additionally, over 90% of the physicians had more than 50 patients under their care.

Previous survey data taken between 1996 and 2006 found that patients' main concerns were fear of side effects, high pill burden and problems integrating ART into everyday life. For physicians, treatment guidelines regarding ART initiation changed frequently during that period.

In the current study, after analyzing all questionnaire results, the researchers found that the most common reasons patients selected for not starting ART were "I rely on my body to tell me when to start," and "lack of symptoms." This was particularly true for the group with a CD4+ cell count below 350, arguably the patients that need antiretrovirals the most. Overall, 47% of all three CD4+ cell count groups stated that they "didn't want to think about HIV."

In terms of readiness, for the two groups with a CD4+ cell count below 500, 50% said they "were not ready" for treatment and about 33% were "ambivalent" toward it.

On the physician side, the main reasons for not starting a patient with a CD4+ cell count below 350 were the perception that the patient was too depressed and that the patient didn't understand "key disease issues." For the group with a CD4+ cell count between 350 and 499, physicians primarily withheld treatment because they felt they had not known the patient long enough or that the patient was too depressed to start medications. In the group with a CD4+ cell count over 499, physicians also commonly felt they had not known the patient long enough.

When asked to assess whether HIV treatment guidelines were suitable for each patient, physicians thought recommendations were suitable for their patients 93% of the time. However, when asked if ART was currently indicated for each patient, physicians who had a patient with a CD4+ cell count below 500 said 51% of the time that they should start treatment; among patients with a CD4+ cell count between 350 and 499 specifically, only 43% of their physicians said treatment was indicated. Unsurprisingly, for patients with a CD4+ cell count over 499, their physicians thought they should start ART only 16% of the time.

The study had some limitations, such as a low number of patients in the group with a CD4+ cell count below 350 and lack of analysis regarding potential cultural differences in this cross-continental survey. Nonetheless, these results shed light on some of the current thinking behind why HIV-infected patients and their physicians defer starting therapy. These reasons differ from those in the past, when toxicity and high pill counts were the main barriers to treatment initiation.

The researchers conclude that, particularly with changing guidelines and more patients being approached to start treatment, these new barrier patterns should be taken into consideration.