London patient surveys find widely different rates of patients referred to care and lost to follow-up

A number of surveys presented to the 15^th British HIV Association (BHIVA) conference in Liverpool have found wide variation between clinics in the proportion of patients in the UK who see an HIV doctor within two weeks of diagnosis and also the number who disappear from care (in medical terms ‘lost to follow-up’ or LTFU).

The standard that all patients diagnosed with HIV should, regardless of where they are tested, see an HIV specialist for a full assessment within two weeks was introduced in BHIVA’s Standards for Clinical Care document in 2007.

A survey from the Greenway Centre at Newham General Hospital in east London found that not only was attaining this standard the exception rather than the rule, but that matters had actually got worse in the last year. In 2007 over half (58%) had seen an HIV specialist within two weeks of diagnosis but by 2008 this had gone down to a third (33%). The mean time between diagnosis and appointment was 16 days in 2007 and 25 days in 2008. In 2007 one in 20 new patients still had not seen a specialist within six weeks; by 2008 this had grown to one patient in six.

A number of appointments are reserved for new patients at the clinic, the authors explain, but the problem was that while eight slots a month were made available, the clinic actually saw ten ‘new’ patients a month in 2008, many of these being patients transferred from other clinics or consultants. “Further interventions such as a nurse-led stable patient clinic are being implemented but considerable innovation will be required to meet the target,” comment the authors, pointing out that patient numbers at the clinic have doubled from 400 to 800 in the last seven years with no increases in medical staffing.

Meanwhile a few miles away in Hackney, north-east London, matters are a lot better at the HIV clinic at Homerton Hospital. This clinic saw 88 newly diagnosed patients in 2007 compared with 52 in the same year in Newham; 68% of them were of African or Caribbean ethnicity (78% at Newham) and 57% women (62% at Newham). A clinic specialist saw 93% of them within two weeks. Interestingly only half were actually diagnosed at Homerton GUM clinic; the others were diagnosed as in-patients (about 15%), in antenatal clinic (another 15%), by their GP (about 10%), in other outpatient clinics (about 7%) and the other 3% at a variety of other places such as drug dependency units.

However while the clinic was successful in its initial appointment system, it found that a significant minority of these patients dropped out of care. Although all but one of the newly-diagnosed patients did show up for their initial appointment, 30 (35%) did not attend any further appointments including eight of the 37 who had CD4 counts under 200. The person who did not attend their initial appointment also had a CD4 count under 200, so a quarter of patients in this category (24%) disappeared from further care.

Another north London hospital found similar rates of disappearance from its established patient group, as opposed to from newly-diagnosed patients. The North Middlesex Hospital found that between 2005 and 2009 157 patients out of 723 were lost to follow-up, a rate of 22%. This excluded patients who were known to have transferred to another clinic, died (2%), or moved out of the UK (1%). It worked with the Health Protection Agency’s SOPHID database of patients in care in the UK to trace individuals and found that 55 had transferred to another London clinic (of whom one died), and 14 to a clinic out of London. This left 87 patients (12%) whose whereabouts were unknown and did not appear to be in care.

These patients were, compared with the established patient group, somewhat younger (mean age 40 versus 44), had been diagnosed for much less time (just over two versus 5.5 years) and much more likely to have had a detectable viral load at last visit (60% versus 20%). One in five had had an AIDS diagnosis and 18% versus 7% had been diagnosed during antenatal care. Although only one in 17 patients in the established group were classed as being on a failing antiretroviral regimen, one in six of those lost to follow-up had been at their last 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. SOPHID cannot trace all patient outcomes, and a number of these patients will have moved abroad, but a number will still be in the UK outside of HIV care.

Finally, a survey from King’s College Hospital in south London looked at how many patients were successfully linked to care after their positive test. It found 339 patients who had had an HIV-positive test result from the hospital virology lab between September 2006 and August 2008, and another 26 with an indeterminate result. Three-quarters of these had been tested at the hospital GUM clinic, with the majority of the others being inpatients who received a test during a hospital stay. Nearly sixty per cent were linked into HIV care at King’s, while 12%, mainly the inpatients, were found to be known HIV-positive patients already. Eight per cent went to another clinic or left the UK, while 3% died.

This left 5% of patients who actively disengaged from care or never returned for their results and – worryingly – nine patients (2.5%) who, it appeared, had never been informed of their HIV-positive test result. These had all been tested in non-GUM settings and were not informed variously due to failure to arrange a follow-up appointment, or failure to either hand over the test result or record it at all. This means a total of one in six patients whose whereabouts and care status were unknown.

For more on this and other surveys of patient care presented at the BHIVA conference, see Strategies and challenges to reduce undiagnosed infection.