1. Project Overview

2.  General population getting older.  Greater demand on Health & Social Care Services.  Plenty of data on health for those 50yrs+.

3.  People living longer & ageing with HIV on ART.  Little research on health and social care needs of ageing population with HIV.  Lack of data for service providers to plan for health and social care needs of those ageing with HIV.

4.  To establish empirically valid quantitative and in-depth qualitative data describing the growing and changing population of older adults with HIV.

5.  Research project to find & establish needs.  “Experienced” HIV Patient led and constructed to ensure relevant questions asked & areas covered.  Ethical & Medical compliance & oversight.  Partnered with established research in USA – ACRIA Research On Ageing with HIV study.

6.  Outcome measures ◦ Self-reported health problems of those over 50 compared with those under 50. ◦ Comparative incidence of depression and other measures of psychological wellbeing. ◦ Comparative data on social isolation. ◦ Comparative data on economic status and life style.

7.  Quantitative ◦ Survey instrument.  Pilot of 50 people 50 yrs and over.  Major study 500 people split in half (250) above and below 50 years of age.  Qualitative ◦ Interviews of 10 survey participants 50 yrs +.

8.  68 pages covering ◦ Health ◦ Well being ◦ Social  Family / Friends  Isolation  Loss ◦ Spiritual ◦ Financial  Some R.O.A.H questions for comparison UK/USA.

9.  50 candidates from C&W HIV Directorate. ◦ Aged 50 years or over. ◦ Broad cohort & demographic ◦ Patient base biased towards gay men ◦ Prove study & learn lessons  Qualitative Interviews ◦ 10 of above candidates for more through experience.

10.  250 under 50 yrs + 250 over 50 yrs =500 ◦ Compare over 50yrs data with pilot. ◦ More informed data. ◦ Compare current experience of those under 50yrs. ◦ Some may be under 50 but have been diagnosed longer. ◦ Discover areas of need. ◦ Compare with National Averages. ◦ Compare with USA. ◦ Subsets allow for some specific data i.e. pregnancy.

11.  Project started 2008.  Pilot to be delivered early 2010.  Larger study delivered summer 2010.  Reporting completed by end of 2010. We remain ambitious with our delivery timeframe.

12.  First major patient led research project with any NHS organisation.  Patients skill base / living with HIV.  Learning curve for patients & NHS.  Building patient involvement research framework and process as by-product.  NHS slow to change and broaden process to facilitate this form of research. For all partners – “Learn as we go” approach.

13.  Financiers year report on progress due March/April 2010.  NHS Ethical approval and subsequent Research lead ongoing audit.  C&W duty as key partner to ensure correct delivery within their research process.

14.  Ground breaking patient led health research. ◦ Easier for patient led research in future.  Patient led & constructed leads to patient issues and outcomes being the focus.  First major ethical and medically accepted research project of its type.  Help plan local health and social care outcomes as well as contribute to global understanding of Ageing with HIV.

15.  St Stephens Aids Trust ◦ Statistician ◦ Financial holding & management.  Chelsea & Westminster NHS Foundation Trust ◦ Lead Researcher ◦ Project assistance, advice and oversight ◦ Main partner.  ACRIA – Aids Community Research Initiative of America  Monument Trust.

16.  Dr. David Asboe ◦ Lead Researcher.  Ignacio Escrich Val ◦ Frontline Patient Forum project lead.  Sundhiya Mandalia ◦ Statistician.

17. Thank you for your interest. www.hivage.net www.frontlinehiv.net www.chelwest.nhs.uk www.ssat.org.uk www.acria.org