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 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
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
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