HIV patient care in the UK is far from normalised

HIV is far from being a normalised medical condition in the UK hospitals, a study published in the online edition of Sexually Transmitted Infections has found. Very few hospitals combine HIV notes with general hospital notes, and many doctors thought that this was compromising the care of HIV-positive patients.

Since the advent of potent anti-HIV therapy there has been a dramatic improvement in the prognosis of HIV-positive individuals, and studies are now suggesting that many HIV-positive patients will enjoy a near-normal life expectancy. Along with the improvement in the medical outlook for patients with HIV, attempts have been made to ‘normalise’ the illness and to reduce its associated stigma.

Hospital notes for HIV-positive patients are often handled in the same manner as notes for patients attending sexual health or genitourinary medicine (GUM) clinics. These notes identify a patient by a code rather than by name and are protected by a higher level of confidentiality. They are also kept separate from normal hospital notes and cannot be accessed by clinicians working outside the specialist department.

Some HIV treatment centres have moved away from this approach and the notes of HIV-positive patients are treated no differently to those of other outpatients.

In late 2005, investigators carried out a survey involving over 130 HIV treatment centres in the UK to see how “normalised” HIV outpatient note-keeping was and to describe the views of specialist HIV doctors regarding the normalisation of their patients’ care.

Most of the HIV treatment centres (60%) were at district general hospitals, with 26% based at teaching hospitals and the remainder in primary care or health centres. Many of the clinics (44%) had a single HIV consultant physician.

The majority of HIV-positive patients were seen within a genitourinary medicine clinic, and only three of the clinics participating in the survey had a dedicated HIV outpatient clinic. Infectious diseases clinics (15%) were also the sites of HIV care. Over two-thirds of clinics saw fewer than 200 HIV-positive patients a year.

In 88% of cases, HIV notes were kept separate from general hospital notes. Only 11% of centres used combined HIV and hospital notes. Centres using combined notes were significantly more likely to be at teaching hospitals (p

Most clinics (86%) used only a hospital number when requesting blood tests for patients, and 47% of clinics prevented access from other parts of the hospital to the computerised records of HIV-positive patients.

Three-quarters of clinics communicated with a patient’s GP immediately after their HIV diagnosis, but only 60% maintained regular contact with a patient’s primary care provider. Clinics that used combined notes were more likely to communicate with GPs (44% vs. 26%).

Only 10% of clinics provided open access to HIV notes if an individual was admitted to hospital as an acute patient, and a little over a quarter of HIV treatment centres held joint antenatal clinics with obstetricians for the care of HIV-positive pregnant women.

Difficulties in communication affecting the delivery of HIV care were reported by 42% of respondents, and of these 67% felt that the normalisation of HIV notes would lead to improved patient care.

“This survey suggests that in most centres management of HIV-infected patient care is far from normalised”, write the investigators.

They suggest that arguments in favour of increasing normalisation of note-keeping for HIV-positive patients are likely to grow. In particular, the role of GPs in the care of HIV-positive patients is likely to increase, and as HIV-positive individuals live longer, they are increasingly likely to require treatment from non-HIV medical specialists.

The investigators acknowledge that HIV is still a stigmatised illness and emphasise that sexual health notes must not be incorporated into general hospital notes – indeed doing so would be illegal. However, they conclude, “centres where HIV notes are kept separate from hospital notes should consider combining notes for delivery of optimized clinical care.”