Project Overview

General population getting older.

Greater demand on Health & Social Care Services.

Plenty of data on health for those 50yrs+.

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.

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

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.

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.

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 +.

68 pages covering◦ Health◦ Well being◦ Social

Family / Friends Isolation Loss

◦ Spiritual◦ Financial

Some R.O.A.H questions for comparison UK/USA.

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.

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.

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.

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.

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.

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.

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.

Dr. David Asboe◦ Lead Researcher.

Ignacio Escrich Val◦ Frontline Patient Forum project lead.

Sundhiya Mandalia◦ Statistician.

Thank you for your interest.

www.hivage.netwww.frontlinehiv.net

www.chelwest.nhs.ukwww.ssat.org.ukwww.acria.org