Infectious diseases clinical outcomes

Clinical outcomes are measurable changes in health, function or quality of life that result from our care. Constant review of our clinical outcomes establishes standards against which to continuously improve all aspects of our practice.

About the Infectious diseases service

The Infectious diseases department provides clinical expertise in the diagnosis and management of unusual and complicated infections, tropical diseases, and children with Human Immunodeficiency Virus (HIV) infection and Acquired Immunodeficiency Syndrome (AIDS). There are also specialist clinics for children with tuberculosis and chronic viral hepatitis.

A major part of the service is dedicated to the care of HIV infected children. The following section details clinical results for the HIV part of the service.

Clinical outcome measures - HIV

HIV is a blood-borne virus which attacks the body’s immune system and weakens its ability to fight infections and diseases, such as cancer. It is a life-long condition that can lead to acquired immunodeficiency syndrome (AIDS), where the body’s immune system can no longer fight infections and tumours.

While there is no cure for HIV, medication known as antiretrovirals works by slowing down the damage the virus does to the immune system. The outlook for children with HIV in Britain today is very good, a lot better than it was even 10 to 15 years ago. HIV is now considered a chronic life-long disease that must be controlled. There is evidence of this within the service at GOSH, where children in their teens are well and show every likelihood of living into their thirties and beyond. Only two children have died with AIDS at GOSH in the last 10 years, in comparison to 13 deaths in 1996 alone.

The HIV team provide regular medical monitoring of every patient with HIV to see how the virus is affecting his or her health and how effective medication is. This will involve a number of tests and examinations.

1. CD4 cell count results

One of the most important tests used by the team is called a CD4 cell count. HIV attacks CD4 cells in the immune system. A CD4 cell count measures the number of CD4 cells in a sample of blood to give a rough idea of the health of the patient’s immune system. The higher the count, the better the immune system.

The CD4 cell count can vary from 0 to over a 1000 per cubic millimetre of blood. A lower CD4 count is a sign that HIV is progressing, and the immune system is becoming weaker. If CD4 cell count levels reduce to less than 350 per cubic millimetre, there is potential that without treatment there will be progression to AIDS.

Of patients treated at GOSH for HIV, 85 per cent of the 115 treated in 2012, 85 per cent of the 125 treated in 2013, 91 per cent of the 116 treated in 2014, 95 per cent of the 101 treated in 2015, and 85 per cent of the 89 treated in 2016 had a CD4 count within a desirable range, thus slowing the damage of the disease on the child’s immune system.

The following table shows the proportion of GOSH patients within each range of CD4 cell count:

Table 1.1 CD4 count of patients by year, 2012 to 2016

Percentage of patients with
a CD4 cell count per cubic
millimetre of blood
2012 2013 2014 2015 2016
over 1,000 20.0% 21.1% 17.2% 18.8% 10.1%
between 501 and 1,000 46.1% 44.7% 54.3% 56.4% 60.7%
between 351 and 500 19.1% 19.5% 19.8% 19.8% 14.6%
between 201 and 350 9.6% 10.6% 7.8% 3.0% 10.1%
under 200 5.2% 4.1% 0.9% 2.0% 4.5%

These results are comparable with the CD4 cell counts for patients treated in other centres in the UK and Ireland, and show our own improvement in outcomes over time.

2. Viral load results

Another important marker of the management of HIV is viral load, which is a test to determine the level of HIV in the body. The quantity of virus is measured in 'copies per ml' of blood. The lower the number, the less active virus is present. The treatment aim is to maximally suppress the virus (viral load equal to or less than 50 copies per ml) so that the CD4 counts can normalise. Normalisation of CD4 counts means that children are less likely to become unwell or get serious infections.

The line chart and table below show the percentage of GOSH patients and the percentage of total paediatric patients across UK and Ireland who have a viral load of equal to or less than 50 copies per ml, 12 months after starting combined Anti-Retroviral Therapy (cART). The figures show that we have consistently and rapidly improved our viral load results, surpassing the UK/Ireland average since 2000 and most recently achieving the viral load target range in 85 per cent of our patients.

Fig 2.1 Percentage of patients with a viral load of equal to or less than 50 copies per ml 12 months* after starting cART naïve**

Fig 2.1 Percentage of patients with a viral load of equal to or less than 50 copies per ml

Table 2.1 Percentage of patients with a viral load of equal to or less than 50 copies per ml 12 months* after starting cART naïve**
Years GOSH UK & Ireland***
1997 to 1999 0 (0%) 7/34 (21%)
2000 to 2004 6/9 (67%) 127/305 (42%)
2005 to 2009 19/28 (68%) 277/439 (63%)
2010 onwards 28/33 (85%) 297/399 (74%)

* Response is based on the viral load value nearest 12 months (+/- 3 months) after cART initiation

** cART is defined as: first combination ART composed of three or more drugs across two or more classes (excluding unboosted Protease inhibitors (PIs)), or three nucleoside reverse transcriptase inhibitors (NRTIs) including Abacavir (ABC).

*** 52/689 (8 %) of undetectable results had a lower limit of detection >50 but ≤400c/ml and are included here.

3. Hospital stays results

By offering children and young people ART, we aim to enable them to manage their disease at home, and maintain their wellbeing so they do not become ill and need to stay in hospital. Therefore, the team monitors the number of times patients need to stay in hospital as an indicator of the wellbeing of the patients they support and treat.

The chart below shows that there has been a significant reduction in the proportion of HIV patients needing to stay at GOSH because of illness, from 25.2 per cent of patients in 2000 to 6.7 per cent in 2016.

The chart also shows our inpatient stay data alongside the average for paediatric HIV services across the UK and Ireland. GOSH results are comparable to the national average, with 12.2 per cent of GOSH patients requiring a hospital stay between 2000 and 2014. Most importantly, the trend for all services demonstrates the advancements in care that enable most patients to stay well most of the time.

Figure 3.1 Proportion of patients requiring HIV-related hospital stays - GOSH and UK & Ireland

Fig 3.1 Proportion of patients requiring HIV-related hospital stays

The raw figures for GOSH can be found in the table below:

Table 3.1 Number of GOSH patients in active follow-up and the number of patients who needed to stay in hospital

Year Number of patients
in active follow-up*
Number of patients
that needed to stay
in hospital
2000 131 33
2001 139 33
2002 144 25
2003 156 33
2004 166 22
2005 167 17
2006 163 20
2007 165 14
2008 148 18
2009 143 10
2010 134 14
2011 131 13
2012 119 9
2013 118 7
2014 112 6
2015 88 <5
2016 89 6

* Excludes patients who have died, left the UK and Ireland, transferred to adult care, or who are lost to follow-up.

To prevent the identification of individual patients, where there are low numbers of patients ie fewer than five, exact numbers are not shown.

About the information

Anonymous information is submitted to the Collaborative HIV Paediatric Study (CHIPS) database for national comparison. This information was provided by the Collaborative HIV Paediatric Study and GOSH reports are published annually around September.

This information was updated in November 2018 and will be updated in November 2019.