Only 1 in 5 People Living With HIV Fully Engaged in Care in U.S. Study
by Tim Horn
Only one in five people living with HIV meet the criteria for being established and retained in care, according to a new analysis involving 12 clinics across the United States to be published in a forthcoming issue of the Journal of Acquired Immune Deficiency Syndromes. Though the authors warn that the data involving nearly 23,000 people enrolled in the HIV Research Network are not representative of retention rates in the country, the results nevertheless underscore a need for improvements in keeping those living with the virus connected to care.
As John Fleishman, PhD, of the Agency for Healthcare Research and Quality in Rockville, MD, and his colleagues write: HIV care is a continuum. One end reflects the estimated 1.2 million people believed to be living with HIV in the United States; the opposite end reflects the low rate (28 percent) of people living with HIV in the country who are successfully engaged in HIV care, receiving antiretroviral therapy and maintaining undetectable viral loads.
Provision of care is problematic at intermediate points in this continuum. “An estimated 21 percent of persons living with HIV in the U.S. are unaware of their infection,” the authors note. “Among those aware of their HIV infection, initial linkage to care is often delayed. After patients have been linked with a provider and have made an initial visit, they must still remain in care, with regular visits over a long time period.”
The study conducted by Fleishman’s group examined these later, but essential, stages in the HIV care continuum, notably rates of establishment and retention in care. These rates were determined using three main measurements.
“Establishment” applied to patients who made follow-up visits for longer than six months after showing up once for HIV care. “Retention” applied to patients who had been seen at least twice at HIV Research Network clinics, with visits separated by 90 days, in each year following their initial visit. The researchers also considered the rate of patients lost to follow-up—those who stopped their HIV Research Network clinic visits without notifications.
Fleishman’s group evaluated the records of 22,984 people living with HIV who presented for care at least once between 2001 and 2009 at one of 12 clinics (six were in the Northeast, one was in the Midwest, two were in the South, and three were in the West). Only those individuals who did not have a concurrent relationship with a primary care provider outside the HIV Research Network clinics were included in the analysis.
Overall, 21.7 percent of patients failed to meet the criteria for being established in care—they did not have follow-up appointments that extended beyond the initial six months of their original clinic visit.
Among those who did meet the criteria for being established in care, the majority (57.4 percent) did not meet the definition for being retained in care—they did not consistently have at least two follow-up appointments annually after their early visits—and 34.9 percent were lost to follow-up. Retention was strongest during the first year of care, with rates declining during subsequent years.
Only 20.4 percent of all patients met all three criteria for being successfully engaged in HIV care.
The odds of successfully meeting all three criteria were higher for older patients. “Younger patients may face greater socioeconomic challenges, have minimal experience in navigating the health care system, and/or have a greater sense of invulnerability than older patients,” the authors suggest.
Men were less likely than women to establish care, but sex was not associated with retention or loss to follow-up.
Latinos were significantly more likely than whites in the study to establish care and not be lost to follow-up, though they did not differ in terms of retention. Black patients were less likely to be retained in care compared with whites; however, they were more likely to establish care and not be lost to follow-up.
Patients with an initial CD4 count below 50 were more likely to be retained in care, compared with those with higher CD4 counts. “Symptoms may increase patients’ motivation to see a care provider regularly,” the authors explain.
Though the study involved multiple sites and thus has greater generalizability than single-site studies, “the [HIV Research Network] data are not nationally representative; rates of establishment, retention and [loss to follow-up] may differ among providers with smaller HIV patient caseloads, not receiving support from the Ryan White CARE Act, or with a different mix of patients.” The researchers also point out that some patients received care by non-HIV Research Network clinicians that wasn’t reported and that it is possible that some patients originally seen at one of the 12 clinics permanently switched to non-network providers.
Still, the researchers conclude, “increased adoption of existing interventions and development of new, more effective interventions are urgently needed to help patients establish and remain in HIV care.”