Ageing with HIV

1. Ageing with HIV Project Overview

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

3. HIV Background • 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. Aim • To establish empirically valid quantitative and in-depth qualitative data describing the growing and changing population of older adults with HIV.

5. Research • 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 • 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. Research construct • 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. Quantitative - Survey • 68 pages covering • Health • Well being • Social • Family / Friends • Isolation • Loss • Spiritual • Financial • Some R.O.A.H questions for comparison UK/USA.

9. Pilot Study • 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. Main Study • 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 timeline • 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. Issues arising • 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. Oversight • 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. Benefits • 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. Partners • 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. Key team members • 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