In this blog, written for women, health professionals, policy makers and commissioners, Rachel Plachcinski and Ngawai Moss discuss the lack of evidence for planning pregnancy and maternity care for women with two or more long-term health conditions. They explore women’s experiences through their pregnancy journeys: identifying challenges and gaps in understanding, plus what matters to women during pregnancy when living with long-term health conditions – (long read). Featured Image: ‘The days of the calm, storm and the in-between’ is by Shanali Perera*.
A healthy pregnancy is everyone’s goal but it is harder to achieve for some women, especially those living with other health conditions. They have to juggle multiple appointments and medications, and doubly so when they have two or more long-term health conditions. Women also have to consider issues such as the impact of pregnancy on their future health, whether they should take medication during pregnancy and the possible impact of their conditions on their baby, such as premature birth. There is little or no research evidence to guide them and generally a lack of holistic care.
We’ve been talking to a group of mothers (four white British and two Asian British) with a variety of long-term health conditions whilst developing MuMPreDiCT, a UK-wide research project looking at the growing issue of multimorbidity in pregnancy. They shared their experiences of pregnancy and the complexities around getting pregnant, coping with pregnancy and having a baby and have helped shape our proposals. The project plans to explore the The study of the health of populations and communities, rather than individuals. and impact of long-term conditions and medication on pregnancy and postnatal life with the aim of improving maternity care for this The group of people being studied. Populations may be defined by any characteristics e.g. where they live, age group, certain diseases.. In addition, we all want to prompt more conversations between women and their families, health professionals, researchers, and those who plan and commission maternity care.
What is multimorbidity?
Having two or more long-term health conditions is known as multimorbidity. It is increasingly common in women of reproductive age and now one in five pregnant women have multiple long-term health conditions.1 These can include both physical and mental health conditions, such as heart disease, epilepsy, anxiety and depression. As women in the UK increasingly start pregnancy later in life, multimorbidity is becoming an increasing problem.2 3
There is very little research in this area. The Cochrane Library highlights various reviews relevant to pregnant women with a single condition, such as epilepsy, diabetes and asthma, but nothing for those affected by more than one. There is a review on multimorbidity but, as the authors point out, the research they found was primarily focused on older people and none of the studies included pregnant women.4
Pre-conception and pregnancy considerations
Women who are pregnant, or planning a pregnancy, do have to deal with similar issues as older people with multimorbidities. For example, co-ordinating appointments with different specialists (which can involve travelling to different hospitals) and managing multiple medications.
However, they also need to consider the impact of pregnancy on their health conditions in both the short and long-term. For example, will pregnancy make their condition worse? In addition, women also need to consider how their decisions could impact the baby’s development. Could their medications affect the baby? Could a worsening of their condition cause a serious accident or impact the baby’s oxygen supply? Could their condition cause their pregnancy to end prematurely?
Pre-conception services for women planning a pregnancy are especially relevant for women with long-term health conditions, and particularly for those with multimorbidity. They help women understand risks which are relevant to them and their baby before, during and after pregnancy, enabling them to make changes which could reduce potential problems.5 For example, in preparation for pregnancy, women may adjust their medications to reduce the A way of expressing the chance of an event taking place, expressed as the number of events divided by the total number of observations or people. It can be stated as ‘the chance of falling were one in four’ (1/4 = 25%). This measure is good no matter the incidence of events i.e. common or infrequent. of malformation in their baby or they may choose to be more risk averse in their behaviour.5 However, pre-conception services are not widely available in the UK.
In our discussions with women, a few reported that a longstanding relationship with a specialist health professional provided opportunities to discuss pregnancy plans. Most women we spoke to went to their GP but, although GPs have general knowledge and experience of managing long-term health conditions, pre-conception counselling is a service which requires specialist knowledge of the health conditions, pregnancy, medications, how these factors interact together and what actions women can practically take to mitigate against potential risks. In addition, pre-conception services are not necessarily a ‘one off’ appointment but may require follow up as women adjust to prepare for pregnancy and conceive.
Two further barriers to pre-pregnancy counselling are lack of awareness, and an unplanned pregnancy.
Consequences of multimorbidity during pregnancy
When contemplating pregnancy, women with two or more long-term health conditions navigate their journey at an increased risk. Maternal deaths in the UK are very rare, however the latest MBRRACE report into maternal deaths between 2016-18 found that almost three quarters of women who died during pregnancy (or up to six weeks afterwards) had a pre-existing physical or mental health condition.6 Pregnant women with long-term health conditions are also at increased risk of adverse birth Outcomes are measures of health (for example quality of life, pain, blood sugar levels) that can be used to assess the effectiveness and safety of a treatment or other intervention (for example a drug, surgery, or exercise). In research, the outcomes considered most important are ‘primary outcomes’ and those considered less important are ‘secondary outcomes’., such as premature labour and babies with a low birthweight.7-9
Data is the information collected through research. such as these highlight why it is important to have a conversation around how to improve maternity-related care and the services to support women in the process of getting pregnant, experiencing pregnancy and childbirth, but also a period beyond that to adjust to new challenges.
For those dealing with long-term health conditions, particularly complex ones, the start of their pregnancy journey can often be a negative experience. The MuMPreDiCT group emphasised that they wanted health professionals to help them enjoy their pregnancy and not just focus on the risks of their health conditions.
Women’s reflections about their long-term health conditions
The six women who worked with us highlighted the idea of a ‘range in severity’ or ‘two tier health conditions’ where the most common conditions were not necessarily the ones that had the greatest impact on daily life, pregnancy or the ability to get pregnant. For example, severe hayfever can make daily living very uncomfortable at certain times of year but is extremely unlikely to impact on fertility.
They also talked about their frustrations about the classification of their health conditions. They felt some of their issues weren’t being captured sufficiently by existing health coding as they didn’t fit comfortably into a category. For example, one member of the group has low lung capacity but there is no code for this, so it is captured in databases as asthma.
Women’s concerns about pregnancy and multimorbidity
The women highlighted problems and inconsistency in care throughout their pregnancy journey. A major concern was a lack of holistic management for women with multiple long-term health conditions. Different specialists didn’t always communicate well (or at all) with one another and the maternity care system.
The women also highlighted gaps in health professionals’ knowledge and how they often shifted the decision-making burden on to the women they were caring for. A lack of information about medications and how they might affect the baby and breastfeeding was a big concern.
Problems and preferences identified by women around care and services
Generally, women preferred talking about the ‘complexity’ rather than the ‘risk’ of their pregnancy. They wanted health professionals to focus on positive aspects celebrating their pregnancy instead of continually emphasising all the problems they faced.
Consideration for women’s mental health was also important especially as past health experiences might create additional anxiety and worry. The women who had experienced several pregnancies also identified clear differences in care between the first and subsequent pregnancies which they didn’t feel was helpful, especially when a long-term condition had developed between their first and subsequent pregnancies.
The women in our group had very different experiences of care. The most satisfied women had elements of multi-disciplinary care with single points of contact with the same professionals (who understood their health conditions). However, there was a lack of follow up after birth and care planning for the postnatal period was universally identified as inadequate. There is very little help from local authorities to enable women with disabilities to care for a healthy baby, whereas there is help if the child is disabled and the mother healthy.
Next steps for MuMPreDiCT
The women who joined us to shape MuMPreDiCT have given us a rich insight into their experiences of pregnancy when living with two or more long-term health conditions. We plan to build on their contributions to understand how this translates to a wider constituency. We will expand the group to involve broader representation, such as including partners, and also reach out to women from seldom heard groups (who often face greater barriers to managing their health). We will ensure our research reflects their lived experience and is responsive to their questions and concerns. In addition, our research team will conduct a qualitative An investigation of a healthcare problem. There are different types of studies used to answer research questions, for example randomised controlled trials or observational studies. of 60 women and their partners to formally explore their experiences of multimorbidity and maternity care.
The six women we consulted had many questions for researchers. These included whether there were higher incidences of mental health problems for pregnant women with multimorbidity, differing levels of trauma associated with childbirth, and better understanding the impact of their medications for their babies and breastfeeding.
We also identified broader gaps in evidence such as understanding the burden of multimorbidity in pregnancy. For example:
- how many women have two or more long-term health conditions before pregnancy?
- what health conditions do they have and are there clusters and patterns in conditions and their development?
- what are the common combinations of medications prescribed during pregnancy for women with multimorbidity and when taken together do they result in unexpected adverse effects?
More research is required to answer these questions to inform policy, shape early interventions and assist women to make informed decisions for themselves and their babies.
You can keep up with our progress and presentations on our website: www.mumpredict.org.
Things to think about
- For women who are pregnant, or planning a pregnancy – make sure you have someone with your on your pregnancy journey, such as your partner, a close friend or family member, to help you navigate the healthcare system. And find ways to celebrate your pregnancy.
- For health professionals – how can you help women with long-term health conditions enjoy more positive pregnancy and childbirth experiences? Is this something you could discuss with colleagues and parents together?
- For local health services – what information and services do you provide on long-term health conditions that are relevant for women of childbearing age, and support them to reduce any health risks for themselves, their pregnancies and their babies?
- For researchers – do you ask about long-term health conditions when carrying out research projects in maternity care or with women of reproductive age? Do you make sure those findings are a feature of the plain language summary?
Special thanks to Charis, Jennifer, Mary, Nicola, Sara and Siddeequah for sharing their experiences, and to Ing, Krish and Mairead on the research team.
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*Featured Image: ‘The days of the calm, storm and the in-between’ (2019) is by Shanali Perera, a contemporary artist, educator, activist, retired Rheumatologist, living with Vasculitis. She works across the intersections of art, health, medical education and patient support: https://www.changinglanes.me/
Declaration of interests:
Rachel Plachcinski reports personal fees from University of Birmingham, from null, during the conduct of the study. Ngawai Moss: Consolidator grant received for this study. I have lived experience of epilepsy in pregnancy and have an interest in this area. I was a A person who takes part in a trial, often but not necessarily a patient. on a study about this topic and have links with the epilepsy register in the UK. I am also a founding member of a women’s health charity working internationally focused on pregnancy and childbirth.
Rachel’s biography appears below. Read Ngawai’s biography.