MuM-PreDiCT goes to Egypt!

By Ngawai Moss

MuM-PreDiCT research has always had patient and public involvement at its core to ensure the research is meaningful for women with two or more long term health conditions. I initially got involved during the early stages of development, now two years later we are 10 months into the funded programme!

We have a wonderful group of women who have helped shape and steer the research as it evolves. Their contributions are integrated in all sorts of ways, from changing the research design to include the perspective of Dads (who often play a massive role in supporting and caring for women), to changing the wording and design of public facing materials (like posters or our recent core research outcomes survey). Women from our patient and public involvement group have also helped raise the profile of the research and the types of issues they face in their pregnancy journeys speaking at events and writing blogs.

I was invited to Egypt to speak about ‘Patient, Public and Community Involvement in Women’s Health Research’ by Dr Mohamed Fawzy who was organising the Upper Egypt Assisted Reproduction Conference. He was looking to showcase best practice in women’s health research, and it seemed a perfect opportunity to highlight our approach to involvement as part of the MuM-PreDiCT research.

I spoke about patient and public involvement in women’s health research and provided context by featuring real life examples of impact from MuM-PreDiCT. I explained that women with two or more long term health conditions are subject matter experts in living with their health conditions, they appreciate or rely on their support networks. Patient insight like this is valuable and should be an important element of research to improve its relevance and quality. Ultimately study findings should be meaningful for those who will benefit from research learning and the improvements in care they may generate.

I also highlighted that ‘involvement’ is different from ‘participation’ (where research is conducted on or about patients). Women from the MuM-PreDiCT patient and public involvement group contribute to the research process, as do Rachel Plachcinski and I who are both co-investigators. I outlined some principles to help researchers who wanted to start involving patients in their research journey. For example: building relationships, involving people as early as possible, communicating openly, showing reciprocity, and costing involvement work into research. Different research environments and methods may require different approaches but the principles are broadly similar.

Traveling to Egypt was an amazing experience, meeting new people, sharing meals and seeing some of Egypt’s historic sights. There was an impressive range of speakers at the conference from all over the world… but luckily they upgraded me to ‘Prof’ Ngawai Moss on all the promotional materials so I stated off on a high!!

Ngawai sharing her views and experiences at the conferences and later exploring the Egyptian Pyramids.

Women Representative’s Perspective and Experience

My name is Sally Darby and I’m a a member of the Patient and Public Involvement advisory group for MuM-PreDiCT.

I was recently invited to speak at the Drug Information Association (DIA) Europe conference, at a session entitled, ‘Assessing Exposures to Medicines During Pregnancy: An Evolving Landscape. Track: 04 Pharmacovigilance and Safety’. I was asked to explain my experiences of pregnancy and childbirth as a woman taking medication for chronic health conditions. I was to follow papers delivered by medical professionals and researchers examining the impacts of medicines upon pregnancy and how best to include pregnant women in medical trials and research.

The session chair asked me to tell my personal story about my experience of wanting to become, and then becoming pregnant whilst taking medications, including what I was thinking when I found out I was pregnant, who I discussed issues with, how I came to my decision about pregnancy and medication use, and any other issues I felt were important. This could also include any concerns I had for my child as they developed due to taking medication while being pregnant. I was asked to talk for 5-7 minutes and then answer questions as part of the panel discussion. I opted to appear at the conference by video link rather than travelling to Brussels. Several other speakers were appearing virtually and there were also conference delegates present in person.

I spoke of my experiences of deciding to become and then becoming pregnant after having been diagnosed with Multiple Sclerosis (MS). This pregnancy was before I started taking medication for MS. I then talked through the very different experience of my second pregnancy, when I was on Tysabri, a disease modifying therapy (DMT) for MS. I explained the collaborative process of planning my pregnancy involving my husband, my neurologist, physiotherapist and other medical professionals. I was monitored closely through my pregnancies and had obstetrician-led care throughout. I was advised to have caesarean sections for my births.

During my second pregnancy I stopped taking my medication on medical advice, returning to the treatment two days after the birth. My second pregnancy was difficult in large part due to the need for me to manage my MS symptoms without medication. Since the birth of my second child I have changed DMT and now take Gilenya. I have been advised by my MS team that it is dangerous to mother and baby to become pregnant whilst taking Gilenya. I spoke at the conference of how this is a significant factor in my decision not to have any more children.

Following my short talk, the panel were asked a few questions. I was asked specifically about the challenges women taking medications face in pregnancy and how medical professionals can support them better. I spoke here about the anxieties and concerns I felt during my pregnancies, which were largely about having and caring for a newborn baby. I pointed to examples of care I know happens in some areas of the country today where hospitals and medical teams work closely together with maternity care to support pregnant women with pre-existing health conditions and ensure they feel prepared for the experience of childbirth and early motherhood.

Although I found the experience of talking to a group of experts in their fields a little intimidating and certainly nerve wracking, the delegates and panel made me feel very welcome and listened to. I hope that my contribution demonstrated the personal implications of their valuable research. I received a kind email from the session chair following the conference in which she stated her appreciation for my honest and personal account.  

Sally is the founder of the Mums Like Us network for disabled mothers. http://www.mumslikeus.org/

Sally with her daughters.

Survey: Help prioritise a list of outcomes

Are you…

(i) planning a pregnancy / have been pregnant in the last 5 years, AND you have 2 or more long-term physical / mental health conditions (e.g. diabetes, asthma, depression, anxiety, other examples); or

(ii) a family member / partner / carer of a pregnant woman with 2 or more long-term health conditions; or 

(iii) a health / social care professional looking after women with 2 or more long-term health conditions or their children; or

(iv) a researcher interested in 2 or more long-term health conditions in pregnancy.


Take part in a survey!

Please help us choose a list of mother and baby outcomes that are so important, that they should be reported in all studies for pregnant women with multiple long-term conditions.

Link to survey & more info: https://bham.onlinesurveys.ac.uk/delphi-survey-core-outcome-set-mumpredict

Queries: contact Ing at s.i.lee@bham.ac.uk.

The survey takes 20 minutes, the first round will close mid June 2022.


How was the survey designed?

The survey asks you to rate on a scale of 1-9, how important are each outcome. This will help us agree on a minimum list that researchers should report in all studies.

The outcomes listed came from previous studies and focus groups with women, partners and clinicians.

Study protocol: https://bmjopen.bmj.com/content/11/10/e044919.long

Flowchart of the development of a Core Outcome Set.

Reflections of an early career researcher on patient & public involvement & engagement

MuM-PreDiCT’s Patient and Public Involvement & Engagement (PI&E) Advisory Group has been with us from the very beginning of our journey. To date, we have had seven meetings with the PI&E Advisory Group, and they have been invaluable in advising on all aspects of MuM-PreDiCT, starting with the £3m collaborative grant proposal, to the study design of our work packages, our recruitment strategy and the interpretation of our study findings.

 

One aspect of PI&E which isn’t talked about so much is how PI&E members influence our development and practice as individual researchers, as well as the conduct of a study. So here is my experience of working with the MuM-PreDiCT advisory group.

Active involvement in meetings
By attending PI&E meetings led by our PI&E lead, Rachel Plachcinski, I have learned some good practice for hosting meetings. Firstly, Rachel always has some fun ice breaking questions, such as ‘What is your favourite Easter egg chocolate’. I later incorporated this into my focus group with pregnant women with two or more long-term health conditions. This meant they did not have to share their medical history with the group if they did not feel comfortable doing so.

During the PI&E meetings, which are held online via Zoom, I found I struggled to juggle between following the conversation, formulating my thoughts on my response, and following the comments in the chat box. Reflecting on this, when conducting focus groups, I had designated colleagues who would follow up on the chat comments. We also had a designated person who would check in with participants and offer support after they discussed distressing experience.

I learned from PI&E members’ experience that it is important to acknowledge their input, especially when they have so graciously shared very personal stories. I also learned that the research meetings can be intimidating, especially for new members. Rachel, our PI&E lead, ensures that I prepare the relevant documents and share them with the PI&E members in advance. For workshops, I have prepared separate versions in Plain English to explain any medical jargon. I aim to follow the example set by my senior research colleagues, who always seek the thoughts and experiences of PI&E members in these meetings.

Learning new skills and approach
I have also learned new skills from MuM-PreDiCT PI&E members. I happily admit I am quite a dinosaur when it comes to information technology. It was PI&E co-investigator Ngawai Moss who introduced me to Canva for graphic design. I secretly try to learn a trick or two on how to make an engaging Twitter post by referring to @ngawai_n ’s Tweets. I also tried my hands on Miro board after PI&E member Sara introduced me to it. Working with patient charities to recruit for my focus groups, I learned the power and reach of Instagram. Our PI&E members have also provided helpful guidance on the sites that new mothers would frequent, such as Facebook groups for home schooling activities and meal plans for families.

Sensitive and clear wording
MuM-PreDiCT’s PI&E Advisory Group always comes to the rescue when I need advice on wording for research documents, such as study posters, participant information sheets, surveys, manuscripts (and this blog post!). They coined the phrase ‘2 or more long-term health conditions’. They would happily cover my documents in red tracked changes to make it read better. Their feedback made me much more aware of the impact words can have.

Pilot test
The MuM-PreDiCT PI&E Advisory Group was also a safe place for me to test out my approach to conducting my focus group, exploring outcomes that should be included in the Core Outcome Set for pregnant women with 2 or more long-term conditions. The exercise meant that I recognised the shortcoming of my approach. I was able to reframe and simplify my question to stimulate a productive discussion on outcomes, rather than possible solutions to bad experiences. This meant that I could get the most out of the focus groups to meet the research objective. The PI&E members have also pilot tested my Delphi survey for the Core Outcome Set development and I am very excited to share the live survey here

Thank you!
So I want to say a big thank you to our lovely MuM-PreDiCT PI&E. Advisory Group. I have personally learned a lot from the group and I hope we can do you proud with our research work.

Prepared by Ing Lee, Rachel Plachcinski, Ngawai Moss, and Megha Singh.

Ing happiest when eating cakes.

Meet The Team: Anuradhaa Subramanian

MuM-PreDiCT will be running a ‘Meet The Team’ series to introduce our team members.

This month, we introduce you to Anuradhaa Subramanian.


I’m a final year PhD student, studying the burden of Polycystic Ovary Syndrome (PCOS) and I work as a research fellow at the University of Birmingham.

I’m interested in the use of real-world data such as primary care and hospital records to answer epidemiological and pharmacoepidemiological questions pertinent to patterns of illnesses and the impact of different medications at the population level. I’m particularly interested in the epidemiology of PCOS, as this common condition affecting women is misunderstood, overlooked by researchers and funders, and overall dismissed as a women’s health issue.

I grew up in Chennai, India, a beautiful city home to beaches, delicious food and rich history. I first decided to pursue engineering as an undergraduate in India and went on to take up an internship at Harvard-MIT Health Sciences and Technology, USA. But after six months of intense work, I decided to move on and pursue something that involved fewer pipettes and animals, and more data and colourful graphs.

This is when I moved to the UK to study for a master’s degree in Health Research Methods and soon after, I felt I had found my calling. I then got a job in academia within a fantastic multidisciplinary team at the University of Birmingham. I had the opportunity to be involved in a series of epidemiological studies and published research papers on several conditions like PCOS, idiopathic intracranial hypertension (a rare brain illness), Henoch-Schoenlein purpura (a rash which can lead to kidney problems), type 2 diabetes, and obstructive sleep apnoea.

It was an incredible learning curve to hone my skills in data analysis and management, and also to gain valuable understanding of the biological underpinnings of these conditions. Our team expanded both in terms of the specialist knowledge and cultural, ethnic and geographic diversity brought in by several colleagues, and so my experience at the university got richer and more profound. 

I’m now working as part of the MuM-PreDiCT team, looking at the effects of having two or more long term health conditions and the issues associated with medication use during pregnancy. 

In the wake of the pandemic, I have also recently been involved in epidemiological work related to COVID-19 and Long COVID. When my colleagues and I published about the higher risk of contracting COVID-19 for women with PCOS, it helped increase awareness about the burden of living with PCOS. In the future, I want to use my acquired skills in the best way possible to further pharmacoepidemiological and PCOS research and bring empowerment and support to women with PCOS.

As much as I enjoy research, I equally enjoy my down time. I like to explore cooking and baking recipes, practice yoga, dance and play tennis and badminton.


Catch Anu in action this Saturday 5th March 2022 (1pm) at PCOS & The Pill: An International Women’s Day 2022 special online event!

PCOS & The Pill: An International Women’s Day 2022 special event! – DAISy-PCOS (daisypcos.com)

Polypharmacy in pregnancy

What is polypharmacy?

Polypharmacy refers to people taking two or more different prescription medications at the same time. It has been increasing over the last 30 years, partly due to more health conditions being diagnosed, and also to more drugs being available.

Side effects are a possible problem for anyone taking prescription medicine, and it is a bigger issue for people who are taking two or more medicines. They may also have problems caused by the interaction between different medications.  We are studying the impact of polypharmacy on people with a variety of health conditions, to help us develop ways to combat the problems of taking so much medication.  

Why focus on polypharmacy in pregnancy?

Doctors, midwives and researchers don’t have a good understanding of how much polypharmacy affects pregnant women and birthing people and their babies.  This is mainly because new medication is rarely tested on pregnant women due to concerns about the possible impact on the unborn baby. We do know that the changes that occur in the body during pregnancy mean that medications may not have the same effect as they do in someone who is not pregnant. Conversely, due to the evidence gap, it can also be harmful for pregnant women with long term health conditions to stop their regular medications.

MuM-PreDiCT is working to address this gap in knowledge, with a particular focus on pregnant women with two or more long term health conditions.

What have we discovered so far?

We have reviewed earlier research studies looking at polypharmacy in pregnancy. We found that overall, one in five pregnancies were reported to be affected by polypharmacy.

We then analysed GP electronic health records of over 800,000 pregnancies that occurred in the UK between 2000 and 2019. We found that the number of medications prescribed during pregnancy has increased over the last 20 years. About a quarter of all pregnant women were prescribed two or more medications.  And of the women who had two or more long term conditions, more than half were prescribed two or more medications during pregnancy.

The most commonly prescribed medications in pregnancy are:

  • antibiotics
  • antidepressants
  • painkillers
  • iron
  • laxatives
  • inhalers
  • anti-inflammatory creams/gels/ointments

When we looked at the patterns of polypharmacy, we found two main groups:

  • Inhalers are commonly prescribed with antidepressants, antihistamines, anti-inflammatory creams/gels/ointments, emollients and steroids.
  • Antidepressants are commonly prescribed with medications for heartburn and acid reflux, and thyroid disorders.

What’s next?

We will look more closely at how polypharmacy affects the health of pregnant women and their babies, both during and after pregnancy. We will conduct further studies to look at whether certain combinations of medications increase or decrease the risk of pregnancy complications such as pre-eclampsia, gestational diabetes, and premature delivery or health conditions in the baby, such as birth defects.

Knowing the potential benefits and harms of consuming medications during pregnancy will help pregnant women and their health care professionals to make informed decisions about whether to continue or start medications in pregnancy.

Take home points

Multiple medications are commonly prescribed in pregnancy, and more so among those women with multiple health conditions. Women contemplating pregnancy, and the health professionals caring for them, have to weigh up the possible benefits and harms to both the mother and her baby of continuing with or stopping pre-pregnancy medications, and of starting new medication during pregnancy. Further research is needed to understand the potential effects of medications that are commonly prescribed together.

Compiled by Anuradhaa Subramanian, Ngawai Moss, Katherine Phillips, Rachel Plachcinski, Siang Ing Lee.

Christmas Quiz

Here at MuM-PreDiCT HQ, we do like a friendly quiz for Christmas.

Socialising (and sharing answers over a few drinks) may be limited this year, so here is our offering to while away the lazy afternoons whilst you digest turkey, roast potatoes, and sprouts. We’ve even included links to places you can find the answers.

Here’s to a COVID-19 free Christmas and a happy new year.

Quiz

1) Name two of the three top research questions from our patient & public (PPI) advisory group.

2) MuM-PreDiCT is studying 79 long term health conditions – can you name 10 of them?

3) Why do we study both mild and serious health conditions?

4) Which 3 groups of individuals will we be speaking with to establish how care can be improved for women with 2 or more long-term physical or mental health conditions during pregnancy?(answer is on page 3 of the document)

5) What is a core outcome set?

 6) Who should be involved in the development of a core outcome set?

7) Among the several definitions for polypharmacy, how many medications are concurrently prescribed as a minimum?

8) What medication is prescribed the most among pregnant women?

9) MuM-PreDiCT is building risk prediction models to estimate the risk of developing 6 health conditions. Can you name 3 of these health conditions? (Answer at the end of the list)

10) What is the next MuM-PreDiCT study that I can get involved in?

Concept for this blog post: Rachel Plachcinski (women representative lead). Questions prepared by the MuM-PreDiCT team.

Focus group: What should researchers measure?

Are you…

Planning a pregnancy / pregnant in the last 5 years?
– Living with 2 or more long-term physical or mental health conditions 
(eg hypertension, diabetes, asthma, eczema, depression, anxiety, etc)?  

We would like to invite you to join an online Focus Group. We want to hear your views on what researchers should measure in studies of pregnant women & birthing people with multiple health conditions.

This is part of a bigger study to develop a Core Outcome Set.

What is a Core Outcome Set?

Researchers measure outcomes to understand what impact a health condition or an intervention has on a person.

Core Outcome Set is a list of outcomes that should be reported in all research studies for a specific health condition. It is agreed by people with the health condition, their health care professionals and researchers. If all studies for a health condition report the same types of outcomes, the results can be compared and combined.

Watch this short video on Core Outcome Set: http://www.comet-initiative.org/Patients

Why is it important?

We would like to find out what outcomes are important to you, that should be reported in all future studies of pregnant women and birthing people with multiple health conditions. Having the Core Outcome Set ready will make it easier and encourage researchers to do studies in this area. 

What is involved?

You will be invited to take part in an online Focus Group hosted on Zoom lasting for 1.5 to 2 hours. You will be reimbursed with a £25 voucher. Each focus group will have 6-8 participants and 2-3 facilitators. You can bring along your partner / carer / a family member so they can join the discussion too (and they will also be reimbursed £25).

When will the Focus Group take place?

There are two dates:

Thursday, 10th February 20222000pm to 2200pmWomen or birthing people with multiple long-term conditions only

This is currently full, but we can add you to the waiting list.
Tuesday, 8th March 20222000pm to 2200pmWomen / birthing people with multiple long-term conditions  

with their partner / a family member / carer

This is currently full, but we can add you to the waiting list.

How do I get involved?

If you would like to take part, please email the research team at s.i.lee@bham.ac.uk  

We’ll be in touch with next steps soon after that!

We can provide a separate session to talk through how to use Zoom if you have never used it before.

More information

COMET study registration: https://cometinitiative.org/Studies/Details/1724

Protocol published in BMJ Open: https://pubmed.ncbi.nlm.nih.gov/34716152/

Participant information sheet:  https://tinyurl.com/2p3v6536

Researching a wide range of long-term health conditions and how these interact with pregnancy

This blog post was written by our parent and public representatives Rachel Plachcinski, Ngawai Moss and our PPI Advisory Group. The infographic was designed by Ngawai Moss.

MuM-PreDiCT’s chief investigator, Professor Krish Nirantharakumar, outlines why it is important to include a wide range of long-term health conditions when studying how these interact with pregnancy. The research will also explore how multiple health conditions develop over time, from hay fever to heart disease.

In consultation with our parent representatives and the senior clinicians on our research team, we have developed a list of conditions to include in our research.1  These vary in how widespread they are within the population but also from seemingly mild to more serious conditions.

Why include both mild and serious conditions?

By analysing all the long-term health conditions affecting anyone who has been pregnant, regardless of their impact on day-to-day life, we can get an idea of how different conditions cluster together. We can then watch how the clusters develop over time and whether they are likely to lead to more serious conditions later in life.

For example, does having a few seemingly minor allergies predispose someone to developing a more severe autoimmune condition, such as lupus, later in life?2

Does the order in which the allergies develop, plus pregnancy, influence this?

Is a particular cluster, which includes both serious and relatively mild conditions, in the mother likely to result in health problems for her baby?

And does a particular combination of prescription medication play a part in any of this?

The MuM-PreDiCT research aims to answer some of these questions.

Serious conditions – common and uncommon

It’s also important to study serious health conditions as many of them are under-researched. Often there is little or no guidance for health professionals on how to care for women with these conditions during pregnancy.

Some serious conditions are relatively common, for example diabetes affects about 5% of pregnant women in the UK. These more common serious conditions are easier to study because researchers have enough cases to work out what was likely to have caused them (and potential issues for an individual’s future health). There is also likely to be a care pathway in place, such as the NICE guidance for caring for women with diabetes in pregnancy.3 All these things give us a great starting point for working out what further research is needed and how we can improve maternity care for the women affected.

Other serious conditions are much less common, especially in women who are of an age to fall pregnant, such as stroke, congenital heart disease, cancer and kidney disease. Uncommon serious conditions are much harder to study as the small number of people affected means it is harder to draw general conclusions about that condition and make predictions. Add in the pregnancy requirement and the numbers get even smaller.

Many midwives and doctors will never encounter a pregnant woman with uncommon health conditions, so producing research and guidance about how to care for women with each separate condition would be a very expensive way to improve care.

MuM-PreDiCT is going to look in more detail at one or two uncommon conditions as part of our cluster analysis. We want to identify what clusters these women form and then study their pregnancy outcomes. We don’t have the funding to look at more of the uncommon serious conditions in this way, but we hope the way we run the project will become established as a framework to help other researchers in the future. 

A care pathway for all women with two or more long-term health conditions

Women and birthing people experiencing pregnancy along with two or more long-term health conditions face particular challenges in navigating day-to-day life and health care. The MuM-PreDiCT team believes it is important to improve maternity knowledge and care for all of them.

Part of our project is to interview these women, and the doctors and midwives caring for them. We will then combine these findings with our research looking at health records, so we can make recommendations about general care pathways for more complex pregnancies.

It is important to include a wide range of long-term health conditions within our research, so we have a holistic understanding of how long-term health conditions interact with pregnancy. We hope that the learning from our 3-year research project will lead to measurable and long-lasting changes in maternity care which will benefit women and their families.

References

1.           MuM-PreDiCT. 79 health conditions defining 2 or more long-term health conditions inpregnancy. 2021. https://mumpredict.org/79-health-conditions-defining-2-or-more-long-term-health-conditions-in-pregnancy/.

2.           Krishna MT, Subramanian A, Adderley NJ, Zemedikun DT, Gkoutos GV, Nirantharakumar K. Allergic diseases and long-term risk of autoimmune disorders: longitudinal cohort study and cluster analysis. European Respiratory Journal 2019; 54(5): 1900476.

3.           National Institute for Health and Care Excellence. NICE guideline [NG3]: Diabetes in pregnancy: management from preconception to the postnatal period. 16 December 2020. https://www.nice.org.uk/guidance/ng3.