Engaging women living with HIV in research: the PRIME Study

@Savoy__Truffles.tariq@ucl.ac.uk

Shema TariqPostdoctoral Clinical Research Fellow (UCL)

& Honorary Consultant HIV/Sexual Health (Mortimer Market Centre)

Overview

• Background

• Overview of the PRIME Study

• Involving women living with HIV

• Reflections

Background

Number of women accessing HIV care by age group, 2004-2014

0

5000

10000

15000

20000

25000

3000020

04

2005

2006

2007

2008

2009

2010

2011

2012

2013

2014

57+

45-56

35-44

25-34

<25

Source: Data provided by Zheng Yin (Centre for Infectious Disease Surveillance and Control, Public Health England)

HIV & the menopause

• Relatively under-researched

• US studies predominate

• Earlier age and possibly increased symptoms1

• Symptoms under-recognised2,3

• Use of HRT ~10%4,5

Source: 1. Tariq S et al. (2016) 2. Johnson TM et al . (2008); 3. Cejtin HE et al. (2005); 4. Fantry LE et al. (2005); 5. Samuel M et al. (2013)

The PRIME Study

www.ucl.ac.uk/prime-study

To explore the impact of the menopause on health and wellbeing

of women living with HIV

In-depth interviews

(20-30)

Analysis & interpretation

Follow-up study at 6 sites

Baseline questionnaires

(1500)Analysis

Follow-upat 18 months

(180)

Study design

Involving women living with HIV

Patient Public Involvement

Patient Public Involvement

Expert advisory group

• 3 community reps

• Recruited through UK-CAB

• Shape: questions, design, dissemination

• Oversee management

Peer researchers

• 2 peer researchers

• Recruited and facilitated focus groups

• Analysed data with me

• Lead authors on abstract

Experiences of menopause among women living with HIV

Source: McGregor-Read J et al. (2016)

Older age, white race, prior fracture, history

of cocaine or IDU

Experiences of menopause among women living with HIV

Source: McGregor-Read J et al. (2016)

Older age, white race, prior fracture, history

of cocaine or IDU

Dissemination

• Website and Twitter

• Community workshops

• Creative workshops

• Future: dissemination event, report, videos?

www.ucl.ac.uk/prime-study

Creative workshops

Closing thoughts

Going forwards

• Study proposal reviewed by community reps

• Partnership with Positively UK

• Peer-based intervention

• Funding for peer project lead (job plan split

between PUK and UCL)

Reflections

• Long-term relationships

• Positively UK and UK CAB critical partners

• Success of study

‒ robust design (questionnaires and interviews) → meaningful study

‒ recruitment

‒ dissemination

• Knowledge and skills transfer

Acknowledgements• Positively UK (especially Silvia Petretti)

• UK-CAB

• PRIME Team: Fiona Burns, Richard Gilson, Alexandra Rolland, Caroline Sabin

• Fiona Pettitt, Janine McGregor-Read, Jane Shepherd, Angelina Namiba

• NIHR

@Savoy__Truffles.tariq@ucl.ac.uk