At least as high a proportion of patients in the UK as in the US seem to be disappearing from
care. Last year, a study from King’s College
Hospital in south London4
found that no less than 40% of patients seen at least once between 1995 and
2005 were not seen at all during 2006. Checking with the Health Protection
Agency (HPA) found that half of these were attending another clinic and a small
number were known to have died, but it still meant that more than one in five
of all patients had disappeared from care. (The HPA encodes patients’ surnames
with a method called Soundex which, when combined with date of birth, creates a
distinctive, though not necessarily unique, identifier which can be followed
from clinic to clinic. No other identifying detail is kept.)
This year, several surveys from clinics in London
were presented at the BHIVA conference in Liverpool
with similar findings. One was from Homerton
Hospital in Hackney, east London. This found that it
was not patients failing to turn up for confirmatory tests that was the
problem; instead, they were dropping out after
this, once they’d had their confirmatory test and their first serious chat
with an HIV consultant.
Only one out of 88 newly diagnosed patients failed to turn up for their
initial HIV-clinic appointment after they had been diagnosed in other settings
ranging from the GUM clinic to antenatal clinics, and by their GP. After that,
however, over a third of the total failed to turn up for any subsequent appointment
during 2007, including a quarter of the patients with CD4 counts under 200
cells/mm3.
Dr Iain Reeves from Homerton comments:
“We can’t eliminate absolutely everyone who turned up at another clinic,
as the Health Protection Agency data we use is very sensitive to misspelt
names, wrong dates of birth, and so on.”
Nonetheless, it’s an ongoing problem, and has continued in 2009, he
adds. If you take a shorter time-frame, you get better attendance, as cases are
‘live’ and exclude people who have died or moved abroad.
“But,” comments Reeves, “in our clinic population of about 700 we had
56 (8%) who we’d seen in the second half of 2008 who we didn’t see in the first
half of 2009. We found that ten of these had transferred to another clinic and
five had died and we’ve managed to get about eight to come back by phoning them,
but that leaves 33 patients who have completely vanished – nearly one in 20.
“If we’ve got a phone number or address, we’ll try and contact them and
if we’ve got permission to contact their GP, we will do that. In rare
circumstances, if someone has been really seriously unwell, we may break
confidentiality and contact their GP anyway, though I can only recall a couple
of cases. There is a dilemma between respecting patient autonomy and our duty
to ensure the patient doesn’t become seriously ill or die.
Community
organisations often spend time unpicking and correcting inaccurate or
incomplete messages seared into people’s brains in the trauma of
diagnosis.
“People may have all sorts of reasons for not turning up. One of my patients
was in prison and turned up again once he was out. But the two biggest reasons
are depression and fear of stigma. There is a subset of patients who struggle
with depression, have problems with adherence, and are very difficult to get
into the clinic. With one recent patient of mine we counted it as a success
that she’d phoned up to cancel her last appointment instead of just failing to
show.
“Another lady was admitted here very ill and went straight to the
Intensive Care Unit where she unfortunately died. Her partner tested positive here and then he
disappeared too. When contacted he said he had seen some people in the waiting
room he thought might know him and he didn’t want to be identified.”
The North Middlesex Hospital, just a few miles away from Homerton, also
did a survey, this time of long-term rather than new patients, and found that
between 2005 and 2009, about 6% of the patient population disappeared every
year. This figure excluded those known to have transferred, died, or moved out
of the UK.
It managed to trace 44% of those missing but could not establish where the
remainder had gone.
Patients lost to care were on average somewhat younger, more recently
diagnosed (two versus five years) and, worryingly, much more likely to have a
detectable HIV viral load (60% versus 20%). Three times as many were on a
failing drug regimen at the time they had disappeared from care as patients who
stayed in care.
The North Middlesex is now in the
process of a systematic attempt to trace these patients. The hospital’s Dr
Chris Wood explains:
“We find the best results are to phone people’s mobiles, as in our
clinic population, many of whom are immigrants, their mobile numbers change
less than their addresses. So far, we’ve managed to persuade everyone to
re-attend that we’ve actually spoken to.
“Many are women diagnosed in the antenatal clinic. One recently phoned
up and said she thought she had an appointment in November- after 2.5 years! I
think she was embarrassed about not seeing us.
“Women sometimes prioritise their children’s needs over their own, and
may only show up again when they become pregnant once more: the way we imply
that the purpose of testing is to avoid transmission to the baby may reinforce
this.
“A lot test positive out of the blue, and feel perfectly well; in some
ways they’ve never quite believed the test result. Some are in wilful denial,
some genuinely don’t know if they need to stay in touch, and some have very
controlling spouses who don’t want them to be in care.
“Another common reason is the dispersal of immigrants. Patients who
don’t make links with a clinic in their new area they will drop out of care. It
may have taken them a long time to trust a healthcare team and they don’t want
to go through it again.
“And yes, some believe they are cured. I had an east African chap who
insisted he was. He said ‘I know you won’t agree with me, but I think I’m
cured. I want a viral load test to prove it.’ Well, we did the viral load test,
which was high, and he still wasn’t impressed by it!”