Lost - Disappearing after Diagnosis

posted: 16/07/2009

A significant number of people disappear from HIV clinics after receiving their HIV diagnosis. We’ve noticed this from close study of NW HIV statistics. It's a problem that is now being recognised across the country. Up to 1 in 4 disappear and there are real concerns for the health of those individuals and for onward transmission.

1 in 4 disappearing
Homerton hospital in London found 30 (35%) did not attend any further appointments including eight out of the 37 people who had CD4 counts under 200. A quarter of people with CD4 counts under 200 (24%) disappeared from further care. People with CD4 counts under 200 are at high risk of many opportunistic infections such as PCP (the type of pneumonia common in people with low CD4 counts).

Another north London hospital, North Middlesex, found similar rates of disappearance both from existing patients as those people who were newly-diagnosed. The hospital found that between 2005 and 2009 157 patients out of 723 were lost to follow-up, a rate of 22%. This doesn’t count people known to have transferred to another clinic, who died (2%), or who moved out of the UK (1%).

Health Protection Agency cross-checking

Using the Health Protection Agency’s (HPA) anonymous database of HIV patients, the HPA found that 55 from North Middlesex had transferred to another London clinic (of whom one died), and 14 to a clinic out of London. This left 87 patients (12%) who do not receive any HIV care.

King’s College Hospital in south London reports that 5% of its patients actively disengaged from care or never returned for their results and – worryingly – nine patients (2.5%) who had never been informed of their HIV-positive test result.

5 more reports at Liverpool

In Liverpool this spring, the BHIVA conference heard five different reports of people ‘lost to follow-up’.

• 64 people from London’s Queen Elizabeth hospital,
• 17.6% of pregnant women diagnosed with HIV in London disappear,
• 38% of teenagers and young people under 25 become 'ghosts',
• 21% of people who tested at Kings College hospital in London vanished, as did
• 15% of those at Cambridge hospital.

Northwest England's missing and action
George House Trust spotted some years ago that there was something odd happening with the region’s HIV figures, because the number of newly diagnosed people never increased the total of everyone diagnosed by the same number. We checked all the possible explanations and none could explain all the losses.

We’ve been following the trend and noticed the gap suddenly widened in 2007, to nearly three times the number in the previous two years. The gap, the number disappearing from HIV treatment services, is now several hundred people across NW England.

We met with experts at the Liverpool Centre for Public Health and showed them our detailed findings and analysis for the period 1996 - 2007. They have now sent details (anonymous) to the HPA of 417 people who are recently missing from NW clinics, to check if any of the people are using clinics in other regions. We are waiting for the results.

Who is disappearing?
Looking at some of the data from London clinics, people disappearing seem

• a bit younger than the patients who stay, (mean age 40 versus 44),
• had been diagnosed for much less time (the average for established patients was 5.5 years) and
• much more likely to have had a detectable viral load at last visit (60% versus 20%).
• 1 in 5 had just received an AIDS diagnosis 
• 18% versus 7% had been diagnosed during antenatal care.
• 1 in 6 had been on a failing regime at their last clinic visit.
• African patients were not more likely to be lost to follow-up, but were less likely to tell the clinic when they had moved to another hospital
• An unknown number of these patients will have moved abroad but this can only be a tiny fraction of those unaccounted for.

 

What should we do?

People have every right to chose to ignore their HIV diagnosis and refuse any treatment offered.

However, we know that many people find HIV diagnosis their worst moment and welcome support to get through this crisis.

The 'disappeared' are telling us that there is much more that clinics and others need to do to improve 'patient retention' rates. HIV is a serious long-term condition that doesn't get better by itself but significantly damages health, and untreated, people are more likely to transmit HIV.

The evidence suggests stigma, fear, misunderstandings about HIV, and news about some significant stage in the person's HIV development, all play a major role in encouraging people to ignore HIV after diagnosis. These need dealing with better.

Frontline clinic staff who give positive results and immediate aftercare may need good practice guides, more support and some further training. There is evidence that clinics vary significantly in 'patient retention.' Some types of people (eg women diagnosed while pregnant, and people under 25 years old) also seem to be more vulnerable to loss from clinics.

The loss of such significant proportions of people from clinics after diagnosis needs detailed analysis and action. There is already enough evidence here for BHIVA (British HIV Association) to carry out an audit of HIV clinics' 'patient retention rates' and to produce best practice guidance.

Partial drop-outs and the community sector

There is also evidence that the community sector needs to act too. There are many people who are 'partial drop-outs' (people who are lost to clinics but seeing the community sector). The community sector needs to consider what more we can do to encourage people to attend clinics for example.

There are many people lost to clinics but still in contact with the community sector - 34% of all the people the community sector sees in NW England, 849 people in 2007. 23% of these people (504) have never been treated in NW England. (Chapter 4, Table 4.3, 2007 HIV in NW report)

George House Trust NW England analysis of people lost to regional HIV treatment 1996-2007 

Source for some of the data
Source for BHIVA conference reports 

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