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.

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.

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.