Are ART preparedness requirements leading to high loss
to follow-up among people who qualify for ART but have not yet started?
Patients with CD4 counts of less than 250 require
timely initiation of ART but structural, behavioural and psychosocial barriers
may pose barriers to ART initiation. Losses to follow-up (i.e., unknown
outcomes) at this stage are high and prevent complete observation of patients’
outcomes, according to Dr Elvin Geng of the University
of California, San Francisco.17 As already noted, Dr Geng has published on the use of
sampling to try to ascertain what is going on with patients who are lost to
follow-up, and has now expanded on his work with a study investigating the
causes of loss to follow-up among people who qualify for ART but for one reason
or another, do not start.
“We used a sampling-based approach which fills in
outcomes through tracking a random sample of lost patients to evaluate ART
initiation at a proto-typical, high-volume, semi-rural scale-up clinic in
south-western Uganda and where two to three counselling sessions and a
treatment supporter are typically required for ART initiation,” he said.
In the study, over a three-year period 2369 ART
eligible patients presented to the clinics. But by one year, 21% became lost
before ART initiation - defined as being at least 60 days late for a return
visit. In a random sample of lost patients, in which 82% of outcomes were ascertained,
the one year mortality was 31%.
After incorporating outcomes among lost patients into
the entire ART-eligible clinic population, Dr Geng and colleagues observed that
over the first 90 days, the fraction starting ART rises quickly. But then at
one year, only 69% of patients have initiated; 16% are waiting in care/for ART,
but continued to visit a clinic —mostly at a different clinic than the original
clinic; 7% are completely disengaged from care, meaning no visits to any clinic
at all; and 9% of patients have died before
“The next question really is: why?” said Dr Geng. “The
requirements for adherence counselling are an important aspect of care and are
very widespread but perhaps their role in the time to ART initiation needs
no mistake, I think that counselling has a tremendous causal effect in how well
patients do after they start ART. But I
think we need to ask ourselves - do we need to evaluate what kind of selection
is going on at that point in time as well, and whether or not that selection
precludes a decent chunk of patients from initiating ART?”
The requirements of adherence counselling include the
need to make repeated clinic visits for counselling — which Dr Geng said in
their clinic’s protocol meant somewhere between two to four visits before being
initiated on ART — as well as the need to designate a treatment supporter (who
may also need to be trained). Other potential causes of failure to initiate
could include distance to clinic and time off work or family duties required to
make these visits.
“If these observations are true elsewhere, in the
roll-out to date, potentially over one million ART eligible patients who have
presented to care failed to initiate ART in a timely way. Strategies to engage ART eligible patients therefore
represent a public health priority,” he concluded.
Of particular concern are those patients who die
before they can be initiated onto treatment, some speakers noted during the
discussion section — so it may be best to fast track the most ill patients.
Dr Ahonkhai said that while
she agreed about the importance of the pre-ART preparation, education and
counselling, “I think in our cohort we found that the median time to ART
initiation was 30 days in a very large multisite programme in South Africa —
and the South Africa National Guidelines now recommend fast tracking. Fast
tracking, particularly of patients who present with the most advanced disease,
is another important programmatic uptake that can be [implemented].”
Dr El Sadr said that awareness needed to be raised among clinic staff about the urgency of getting this group of patients onto treatment, “Maybe by setting up
something like a clock [or a timer]. The clock starts ticking from when the
person is identified to be eligible so that there’s an awareness that the clock
is ticking [among] the clinic staff and they’re trying to meet the deadline,” she suggested.
can delay because they cannot afford travelling to facilities where ART can be
found," said Dr Geng. “Lastly we need to
remove stigma - to fight stigma - to actually ensure that stigma is not there
because it contributes a lot to preventing people from accessing ART. They
don’t want to come forward for fear of being known by the community that they
Could providing preventive therapy retain people with
HIV not yet on ART in care?
think all of us are aware that most of the data on retention and adherence have
really focused on patients who have initiated ART. Until very recently the
group that was in care, or pre-ART, has not been given enough attention. So
that’s kind of a group that is important to highlight, to try to find
strategies to maintain these individuals in care so that they can initiate ART
in a timely manner,” said Dr El-Sadr.
the basic concerns regarding retention of patients in care before starting ART
is creating incentives to remain engaged in care. After all, why should a
patient give up time and money and travel a long distance to the clinic if
there is no apparent health benefit and they feel well?
cotrimoxazole significantly improves retention amongst ART ineligible clients
in Kenya,” said Dr Pamela
Kohler of the University
of Washington, Seattle,
reporting on an analysis of data from a treatment programme in Nairobi.18 The aim of the study was to evaluate whether a
programme change — which was offering free cotrimoxazole prophylaxis to all
clients, regardless of CD4 count — was associated with improved retention in
care among ART-ineligible clients.
The analysis included 1024 ART-ineligible clients who
enrolled in the programme between 2005 and 2007. At that time, ART
ineligibility was defined as having a CD4 count greater than 250, and WHO stage
one or two disease. One-year retention in care among those enrolled was
compared before (n=610) and after (n=414) free cotrimoxazole prophylaxis was
offered. There were no significant differences in age, gender, TB status, BMI
or CD4 count associated with time of access to care. However those lost to
follow-up were significantly younger and had lower BMI than those who remained
The analysis found that those who enrolled after the
offer of free cotrimoxazole began had a significantly higher retention rate
(84% versus 63%), p<0.001, with a hazard ratio (adjusted for age, gender and
CD4 count)of 2.64 (95 percent CI
In other words, those enrolled prior to implementation
of free cotrimoxazole were more than two and a half times more likely to be
lost to follow-up.
At the same time however, an analysis looking at
retention in the same time periods among those treated on ART found no
difference in the same time periods (89 and 88% retained in care) suggesting
that overall temporal programmatic changes were not responsible for the difference
seen in ART ineligible clients only.
“Although it’s not clear from these data, possible
mechanisms for this effect are decreased morbidity, perception of treatment,
lower cost of care or perhaps establishment of care-seeking habits,” said Dr
Kohler. “The implications of this analysis is that today’s ART ineligible lost
to follow-up are quite possibly tomorrow’s late presenters, and that losing
these clients presents missed opportunities for timely initiation of ART and
for messaging [to promote positive health dignity and prevention].”
This approach might work for other preventive care
measures, such as isoniazid prophylaxis therapy to prevent TB (IPT), and more
generally, the effect of pre-ART prophylaxis on retention in care needs to be
evaluated in a variety of settings. Although uptake of cotrimoxazole is good in
some countries among patients already taking ART or those on TB therapy, it
continues to be an underused intervention among those ineligible for ART,
despite WHO recommendations.