Current HIV treatment (known as antiretroviral therapy or ART) is highly effective. However, many patients in the UK are not getting the best from ART. Over a quarter delay accepting ART when it is recommended and a third do not take it as prescribed (Horne et al, 2007). Delay and nonadherence can make ART much less effective (Stohr et al, 2007), make the virus resistant to ART (Sabin & Hill, 2005) and increase the risk of passing HIV on to others. There are also implications for costs to the NHS (Devine et al, 2009).
There are currently no interventions for improving ART uptake. ART adherence interventions have had limited success, partly because they have not been systematically developed.
We have developed a theory of nonadherence, empirically tested across long-term conditions, and applied it to identify the salient perceptual factors (e.g. beliefs about HIV and ART) and practical factors (limitations in capacity and resources) influencing motivation and
ability to start and continue ART. It is these perceptual and practical barriers that we aim to address in our treatment support programme.
The programme has been developed to help people with the decision to take start taking ART and if they chose to start medication, how to take it most effectively.
To evaluate whether the treatment support programme is more successful in encouraging adherence compared to what is currently being offered,
we will have a comparison group who will receive normal care without the treatment support programme. We will compare how well each group does with treatment, and how they feel about their treatment, and we will then use this information to make recommendations on the best options to help support other HIV positive patients in the future who are facing treatment decision.
The research team is a world-class partnership of academics, clinicians, HIV service users, NHS commissioners and managers, able to ensure that high quality, pragmatic interventions are developed, evaluated and implemented into the NHS. The research environment comprises leading
academic and NHS institutions with a track record of delivering and implementing health services research.
The programme has four main stages:
1) To provide new knowledge about the barriers to starting and continuing
antiretroviral therapy among the one of the groups most affected by HIV in the UK:
people from black African and Caribbean communities.
During February 2012 - August 2012 we conducted 52 semi structured interviews with
HIV Positive people from these communities, who had started ART and were deemed
by their clinician to have poor adherence to their HIV medication. Analysis of the interviews
uncovered a wealth of information on their experiences of being HIV positive and their beliefs
about treatment. This was then used to inform and develop support services to help patients
best manage treatment decisions and if they decided to start taking treatment, to support them
with taking their medication most effectively.
2) To combine the knowledge and expertise of HIV positive people, researchers
and NHS clinicians to develop support services (interventions) to overcome the
barriers to starting and continuing with ART. Our interventions will be tailored to the
meet the needs of each patient. They will address misconceptions about HIV and
ART and concerns about treatment, help people to manage side-effects and provide
information, support and practical advice.
We are currently working on this stage of the programme across selected NHS hospitals
in London and Nationwide. Recruitment is due to continue until October 2016.
3) To determine whether our interventions are acceptable to patients and
cost-effective (i.e. whether they improve ART uptake and adherence and are good
4) To help the NHS to quickly bring effective interventions into routine HIV care
(e.g. by developing training programmes for staff).