Progress report on the HIV and Ageing study

Background:
The study involves completing a comprehensive questionnaire and is designed to improve our understanding of how ageing with HIV impacts on an individual’s health, social and economic wellbeing.

Our intention is to recruit 220 patients from each of three groups namely:
1). HIV positive patients aged 50 and over
2). HIV positive patients aged under 50
3). HIV negative individuals aged 50 and over (peer recruited controls or GUM clinic recruited controls). Patients are selected at random to participate in the study so as to minimise selection bias.

The study is unique in that it is patient led. It has been conceived, designed and is being led by the Frontline HIV Forum (the HIV patient group at Chelsea and Westminster Hospital) in collaboration with clinicians and researchers within the Directorate.

The main study started in February 2013 following a small pilot study. To date, in the HIV positive groups we have received completed questionnaires from 188 patients aged 50 and over and 75 from HIV positive patients aged under 50 although an additional 198 patients were approached and either agreed to be in the study but have not returned their questionnaire or declined participation. Recruitment to the positive arms is proceeding well although slower than initially anticipated.

Recruitment to the negative arm is proving difficult. To date we have received 19 completed questionnaires from individuals aged 50 and over. Our first approach, HIV positive patients aged 50 and over nominating controls (partners, friends or relatives) failed as none of the respondents were prepared, or in a position to, nominate a negative control; this may partly do with the requirement for the control to either have a documented HIV negative test within the last 6 months, at one of the three Chelsea and Westminster GUM departments, or agree to have an HIV test (an INSTI point of care test) at one of the clinics.

We are currently recruiting HIV negative respondents from Chelsea and Westminster Hospitals GUM clinics; this approach was outlined in our protocol and original ethics submission. However recruitment is slower than anticipated as patients are often in a rush, the number of patients aged 45 and over is small, clinics are exceptionally busy with limited time for patients to be approached for consent to join the study and there is only capacity within the budget to recruit from GUM one day a week. The steering group is currently reviewing the recruitment of negative controls.

Recruitment to the study is ongoing with results expected in summer 2014:
Recruitment to the study is ongoing and we anticipate that preliminary findings will be available in the summer of 2014. Our initial goal was to complete the study by September 2013 but there has been some slippage in time lines. This is because recruitment, for a variety of reasons, has been slower than expected for example: clinics are exceptionally busy with limited time for patients to be approached for consent to join the study; it has not always been appropriate for patients to be approached, for example if they were unwell or have received 'bad news’; obtaining informed consent is time consuming.

Additional funding:
It has been possible to extend the recruitment period as the Monument Trust have kindly granted us additional funds so we can reach our sample size of 660 subjects (220 in each of the three groups). Further details regarding the study, including numbers of patients recruited to date are provided in the ‘background’ section below.

Thank you:
Many thanks to the patients who have so far participated in the HIV and ageing study.

Also a thank you to the clinical staff who have referred patients to the researchers and reception staff who have assisted the researchers and flagged eligible patients for the HIV negative arm of the study .

If you have any feedback, suggestions or require further information about the study please do not hesitate to contact either the Research Project Manager. Peter Madden, peter.madden@chelwest.nhs.uk or Paul Decle

Thanks HIV and Ageing Study Team

Dr David Asboe
Jane Bruton
Graham Cawthorne
Alex Cocker
Grainne Cooney
Katie Deakes
Paul Decle
Dr Emilie Elliot
Breda Patterson

and
Peter Madden
Research Project Manager/Medical Statistician