Dr Shema Tariq is a postdoctoral
Clinical Research Fellow & Honorary Consultant HIV Physician at the UCL
Centre for Clinical Research in Infection and Sexual Health in London.
Shema is the lead researcher for the
PRIME study (Positive transitions through the menopause), looking at
the menopause in women living with HIV in the UK. We spoke to Shema about the
study and its findings – and the critical importance of meaningful involvement
of women living with HIV in the research.
Take us back to the
beginning of your research into HIV and menopause – why did you think this
study was needed?
I
became interested in HIV and menopause because, in my clinical work, I was
seeing more and more women having symptoms of menopause and asking whether
their symptoms were different because they were living with HIV. When I looked
at the scientific literature I found that studies around HIV and menopause
tended to be from the USA, where the population of people living with HIV is
very different. I realised there was a real gap in terms of our knowledge of
menopause in women living with HIV in the UK.
In
the past, menopause wasn’t such an important consideration in HIV care, because
women weren’t living long enough to experience menopause, but now it is
increasingly becoming an issue. With advances in antiretroviral therapy, people
are living long and healthy lives with HIV. If you look at women in particular,
over the last decade we’ve seen a fivefold increase in the number of women
living with HIV who are aged between 45 and 56, which is the age when you would
expect women to go through the menopause. In 2016, there were 10,000 women in
that age group accessing HIV care, which is about 1 in 3 of the women attending
for HIV care in the UK. It’s a significant number and it’s going to increase as
more and more women living with HIV reach their 40s and 50s.
The way you’ve gone about
the research for PRIME is really interesting – could you explain the study
design?
Something
that is really critical to the design of PRIME is that it was co-produced with
women living with HIV – they were integral to every stage of the study, right
from the point when we put together the first grant proposal. Women living with
HIV reviewed the proposal and the original study protocol. Then we worked with UK-CAB to recruit
three community reps to sit on our advisory board – all women living with HIV
aged over 45.
PRIME
is a mixed-methods study, which means it combines quantitative and qualitative
research. The reason we use that approach is because menopause is a complex
thing and it’s really useful to look at it through different lenses. We wanted
to use questionnaires to collect data (quantitative), but we also wanted to conduct
interviews and speak to women, to really engage with their experiences
(qualitative).
In
the first phase, we held focus group discussions at Positively UK with women living with
HIV aged 45 and over. Those discussions helped us design our questionnaire and they
also provided us with some really useful preliminary information about women’s
experiences. In phase two, with the help of 21 HIV clinics, we administered
questionnaires to about 870 women living with HIV, aged 45 to 60, across
England. In phase three, 20 of the women who had answered the questionnaire also
took part in an interview, where I could explore their experiences in more
depth.
Two
of our community reps also worked as peer researchers on PRIME, recruiting, facilitating
and analysing focus group work with me. One of the community reps also worked
with me to design the report and all the infographics, so she has been key in
terms of disseminating our results. All our community reps are closely involved
in all our discussions about how PRIME might evolve in the future.
The
involvement of women living with HIV in this research is really key, and it’s
been critical to the success of PRIME. To me, it feels like the right way to do
research. It’s the way to produce robust, high-quality research that everyone
is invested in. When we presented our results at our launch
last month, it felt that we were doing it as partners, and all of us
had an equal stake in it. In my opinion, that’s how research should be.
What were the key findings
of the study?
We
found high levels of menopausal symptoms among women living with HIV; between
70 and 90% of women in this age group experienced some type of menopausal
symptoms. We saw an association between having menopausal symptoms and
reporting poorer mental health. We also saw an association between living with
HIV and reporting lower sexual function – more women in our study reported
sexual dysfunction than in comparable studies of women in the general
population.
Something
that was really striking to me, which should be easy to address, is that nearly
half of the women who completed the questionnaire said they didn’t have enough
information about the menopause. That’s probably the same as the general
population – I think women in general are underprepared for the menopause. But
if you think about women living with HIV, this is a group who are engaged in
healthcare, so we really should be doing better. They have opportunities to get
that information. If we can’t get it right for this population, then who are we
going to get it right for?
We
also did a small survey of GPs, to look at management of HIV and menopause in primary
care. Another key finding was that GPs reported lacking confidence in managing
HIV and menopause. That’s important because often patients come to see us in
HIV clinics and talk about menopause and we say, ‘you should go and see your
GP’. But if they’re going to their GP and the GP isn’t feeling confident and is
sending them back to us, then what you find is women being bounced between GPs
and HIV specialists. In our qualitative research, women described being bounced
back and forth for years sometimes, without their symptoms being addressed, and
no one taking responsibility.
Finally,
we found there was low use of treatments for menopause, with less than 10% of
women using HRT (hormone replacement therapy). Only 3% were using vaginal
oestrogen treatments, which are highly effective at improving vaginal symptoms
and sexual function, plus they are cheap and have few side-effects. Again, use
of HRT and vaginal oestrogen is low in the general population, but here we have
a group of women who are seeing doctors regularly. They are often coming to
sexual health services for their HIV care, so we should be in a position to be
able to address sexual wellbeing and certainly to promote use of vaginal
oestrogens.
The
study has shone a light on gaps in terms of provision and has also highlighted
things that may help. A key element is the importance of women having information
about the menopause in good time. For clinicians, this could mean speaking to
women about menopause and providing information such as the NAM factsheet
from their 30s onwards, so they are prepared.
In
the focus groups, something else that really struck me was that women talked
about how powerful it was to be in a room with other women, listening to their
experiences, and realising that what they were feeling was normal. It underlines
the importance of peer support, something that we know works in HIV. It has
such a great history in terms of HIV and pregnancy, particularly with the model
of peer support we know as ‘mentor mothers’. We need to think about building
upon that model and think about peer support across the life course. Not just
in pregnancy, but as women get older and go through these other changes in
their bodies and their lives.
One
of our focus group participants said, wouldn’t it be great if we had ‘mentor
aunties’? I think that’s brilliant. We’ve been trying to secure funding to set
up a study looking at how best to design a ‘mentor auntie’ model of care and
how to assess that in terms of efficacy.
What else are you planning
for the future of PRIME?
At
the moment I’m disseminating the study results as widely as I can. This is one
of the largest studies we’ve ever done in the UK that focuses on women living
with HIV. That in itself is really important to disseminate. It’s important
that we have evidence out there about women, but it also demonstrates to
academics and healthcare providers that do women living with HIV DO participate
in research.
We
plan to publish several papers over the next 6-12 months, but at the same time
we have an eye towards where PRIME goes next. Now we’ve identified these gaps
in care we need to be thinking about how we address them, and we’re looking at
securing funding to investigate effective interventions. We also have a related
biological study starting in the summer, funded by BHIVA, looking at measurements of hormone
levels in women who are post-menopausal.
There
haven’t been many studies looking at menopause and HIV in other European
countries. I’d be really keen to hear from anybody who is interested in
replicating this work. We’re very happy to share our questionnaire and our
experience. If people in other countries used a similar questionnaire to ours, that
opens up the possibility of pooling data and having a European-wide study.
Although
our study was conducted in England, I think our findings will be relevant to
other European countries with similar epidemics. When you’re going through the
menopause and experiencing symptoms as well as already having to manage a
long-term condition, that can be challenging wherever you are.
For
more information
Read our
factsheet on Menopause and HIV
Read
more about the PRIME study results on aidsmap.com
Find out more
about PRIME on the UCL website and follow PRIME on Twitter @Prime_UCL.
Download
the PRIME study report (PDF) from the UCL website
This
eFeature appeared in the June 2018 edition of the Eurobulletin.