Only 20% of US HIV-positive people have high levels of engagement with specialist HIV care

Michael Carter
Published: 02 May 2012

Only a fifth of HIV-positive people in the United States are fully engaging in specialist HIV care, research published in the online edition of the Journal of Acquired Immune Deficiency Syndromes shows. Investigators from the HIV Research Network examined rates of entry into care, retention in care, and loss to follow-up between 2001 and 2009.

“A minority of PLWH [people living with HIV] established and consistently engaged in HIV outpatient care,” write the authors. “These results suggest that our health care system faces significant challenges in providing continuous, long-term care to the majority of the HIV-infected population.”

HIV is a highly specialist area of medicine. The majority of care is provided at dedicated HIV outpatient clinics. Treatment guidelines recommend that patients should be connected with care immediately following their diagnosis with HIV and then have follow-up appointments every three to four months.

Research conducted in the US has consistently shown that this is not occurring. There are concerns that poor engagement with care is contributing to the excess mortality rates associated with HIV. It may also have implications for the use of antiretroviral therapy as prevention.

Investigators wanted to gain a better understanding of the proportion of patients who are successfully engaged in HIV care and the factors associated with this.

They assessed three key measures of care:

  • Establishment of care – a follow-up appointment six or more months after first engaging with care.
  • Retention in care – two or more follow-up appointments at least 90 days apart in each year of care.
  • Loss to follow-up – no visits for more than twelve months without return.

Their study population comprised 22,984 adults who received care at twelve sites in the HIV Research Network widely distributed across major urban areas in the United States between 2001 and 2009. The patients were diverse and largely representative of the communities affected by HIV in the US.

The investigators were therefore confident that their research would address the limitations of some earlier studies, for instance measurement of a single marker of engagement with care, a small sample size, or a short period of follow-up.

A total of 4,996 persons diagnosed with HIV (22%) never established contact with HIV outpatient care.

“Future studies should investigate mechanisms to facilitate establishing care during this critical period, such as using patient navigators,” comment the investigators.

Factors associated with engaging with care included female vs male sex (p < 0.01), race/ethnicity (black/Hispanic vs white; p < 0.05 and p < 0.001); and older age (40 to 49/50-plus vs 18 to 29; p < 0.01 and p < 0.001).

Overall, 43% of patients consistently engaged with care. The proportion of patients who were retained was highest for the first year and then dropped for subsequent years. Annual rates of retention varied between 68 and 75%.

Only 4% of patients never met the criterion for engagement in any single year.

Factors associated with consistent engagement with care included older age (p < 0.001); risk group (gay men vs. others, p < 0.02); and a CD4 cell count below 50 cells/mm3 (p < 0.001).

Just over a third of patients (35%) who established care were subsequently lost to follow-up. Risk factors for loss to follow-up were similar to those for retention in care.

“LTFU [loss to follow-up] may result from several factors, such as relocation, dissatisfaction with the provider, and logistical difficulties (transportation, convenience of appointments),” suggest the researchers. “Future studies should focus on understanding patients’ perspectives on discontinuing care, examine clinic/health factors influencing the risk of being LTFU, and develop interventions to prevent LTFU.”

The investigators calculated that only 20% of patients met all three of their criteria.

Factors associated with such high level of engagement were sex (female vs male, p < 0.01), Hispanic ethnicity (p < 0.001), HIV risk group (gay men vs heterosexual and injecting drug user; p < 0.01 and p < 0.001), older age at enrollment (p < 0.001) and a lower initial CD4 cell count (p < 0.001).

“Increasing adoption of existing interventions, and development of new, more effective interventions are urgently needed to help patients establish and remain in HIV care,” conclude the authors.


Fleishman JA. Establishment, retention, and loss to follow-up in outpatient HIV care.  J Acquir Immune Defic Syndr, online edition. DOI: 10.1097/QAI.0b013e318258c696, 2012.

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