Placenta Accreta Ireland has collaborated with healthcare professionals on a number of research studies. Below you will find a short summary of these studies with links to the abstract and full text articles.
Research done by our group, as summarised in the other studies below, found that PAS had a long lasting psychological and emotional impact on women. In order to further explore the lived experience of women with PAS, we performed an interview study with couples (both women and their partners were included).
29 people took part in the study, including 12 couples and 5 women who were interviewed without their partner.
Two research papers were published from the results of these interviews: one focussing on the experience of pregnancy and the birth (summarised here), and another exploring the postnatal journey (results summarised below under “parents experience of the postnatal journey”).
For the pregnancy and birth, we found a number of key themes. Many couples had never heard of a diagnosis of PAS and struggled to find relevant and reliable information relating to their diagnosis. Couples described varied experiences of the care they received during the pregnancy, with those cared for by specialist team finding comfort and support in the hands of a specialist team. Couples found it difficult to cope with the uncertainty of the pregnancy, and felt a huge emotional toll from the worry and fear of a PAS diagnosis. Many described the birth as a traumatic experience, and for support partners they found it very difficult witnessing their loved one going through a difficult surgery and birth. Couples felt safe in the hands of experts and felt a strong sense of relief of surviving the birth.
This study highlighted the significant psychological consequences a diagnosis of PAS has on mothers and fathers, explored how they try to come to terms with the diagnosis and the experience of a traumatic birth, and how management within a specialist team can help them to cope with some of these fears and uncertainties.
The full paper can be read at the link at the bottom of this summary.
This study explored the lived experience of the postnatal journey of PAS. We found a number of key themes from the study, which were “Living with a different body”, “The impact on relationships”, “Coping strategies”, “Post-traumatic growth”, “Challenges with normal care” and recommendations for “What needs to change”.
Under the theme “living with a different body”, we found having a hysterectomy (removal of the womb) had a long-lasting impact on women’s physical and emotional health. Some women felt stigmatised by having a hysterectomy at a young age, with many feeling a loss of womanhood and living in a changed body.
Some couples were able to make positive changes in their lives in the aftermath of the pregnancy, known as “post-traumatic growth”, with one mother saying: “I’m stronger than I thought I was. So I’m just so grateful every day to have my baby, and to have my own life and for health”
For the theme “what needs to change”, couples told us recommendations and suggestions for things they would have helped them during and after the pregnancy. Recommendations included psychological support for both women and their partners, written information about PAS and their pregnancy, and longer follow up after the pregnancy. These are summarised in figure 1 in the article (link at the bottom of this summary)
At the time of undertaking this study (2020) very little was known about the impact of placenta accreta spectrum on women’s mental health. Only a few studies had looked at this relationship and found that women with placenta accreta spectrum were more likely to experience post-traumatic stress disorder and experience low mood compared to women with pregnancy conditions.
In order to further explore the impact a pregnancy complicated by placenta accreta has on women, an interview study was conducted with 7 women who had had a pregnancy complicated by placenta accreta within the past 2 years. The purpose of the study was to better understand – what is it like for women to have a diagnosis of placenta accreta spectrum? Is it better to be prepared for delivery or does that heighten anxiety and worry? What is it like for women after a pregnancy complicated by placenta accreta?
While each woman’s placenta accreta story is unique, interviews revealed shared feelings of loss, bewilderment, loneliness and pain, both mental and physical. Women emphasized the shock of being diagnosed with a condition they had never heard of, being separated from their family during long hospital admissions and the immense guilt of feeling like a burden on others. A fear of dying- both for their baby and themselves – was profound as the day of the birth arrived. Women felt overwhelmed after their discharge from hospital and the challenges of trying to get life back to normal. While women were keen to praise the medical care they received, they were also keen to highlight areas they felt could be improved, in particular in relation to pain relief and after care. Women were unanimous in their call for additional mental health resources, both to help them cope during their pregnancy but in particular to provide longer term supports many months after delivery.
This was the first study to explore the lived experience of placenta accreta spectrum. Along with other studies published by our group, the findings from this study have led to the recommendation that psychological supports should be offered to all women with PAS in the national guideline for PAS care in Ireland
The management of a pregnancy complicated by PAS may involve a long hospital stay, a complex birth with a hysterectomy (removal of the womb) through a large incision on the abdomen, an admission to high dependency or intensive care, and the possibility of their baby being admitted to the special care unit. Hence it follows that women may experience a deterioration in both their physical and mental health after what for many women is a challenging pregnancy. However, there are only a small number of studies that have explored the effects a pregnancy complicated by PAS has on women’s physical and mental health. In order to delve into this relatively unfamiliar area, we carried out a survey study for women who had experienced a pregnancy complicated by PAS. Women were approached to take part through two patient advocacy and support groups; Placenta Accreta Ireland and The National Accreta Foundation (based in the United States).
142 women from various parts of the world took part and completed the survey. Women filled out two questionnaires which are used to assess quality of life. The first questionnaire (Short Form – 36) consists of 36 questions which focus on physical and mental health and how this affects a person’s daily life; the second survey explores sexual health (Female Sexual Function Index). For both questionnaires, participants are given an overall score, with higher scores indicating higher quality of life.
The study had two main aims: firstly, to compare the scores for women depending on their pregnancy outcomes, such as women who had a hysterectomy versus those who retained their womb, or those who had an emergency delivery compared to women who had a planned delivery. Secondly, we compared women’s scores at various time points since the birth; women who were less than 6 months since birth were compared to women who were more than 6 months or years after their pregnancy.
For pregnancy outcomes, we found women who were re-admitted to hospital within 6 weeks of delivery had lower general health scores compared to those who did not require re-admission. We found no other pregnancy outcomes such as being diagnosed during the pregnancy rather than at the time of delivery or later, having a planned delivery compared to an emergency delivery or needing a blood transfusion impacted women’s quality of life or sexual health scores.
Comparing women’s scores at different time points since the birth, we found women’s physical health scores were lowest in the first 6 months postnatal. Physical health scores significantly improved over time, with women at more than 2 years after their pregnancy having the highest scores. Mental health scores, however, were low in the first 6 months postnatal and did not improve as much over time.
Overall, we found that pregnancy outcomes such as removal of the womb or an emergency delivery did not lead to worse mental and physical health scores. It was reassuring to see that women’s physical health improved greatly in the months and years after the birth. In contrast, women’s mental health scores were lower compared to physical health in the short term postpartum period and there was no improvement in the long-term. For this reason, we now recommend women with PAS are offered psychological support during and after their pregnancy (see PAS guideline).
In January 2023, the first national guideline for the diagnosis and management of women with PAS in Ireland was published. The guideline makes recommendations about how women with PAS in Ireland should be cared for. The guideline committee was made up of medical professionals from around Ireland who care for women with PAS, including Dr Helena Bartels and Prof Donal Brennan. The patient voice and experience was represented on the committee by Ms Naomi Cooney of Placenta Accreta Ireland.
A plain language summary of the guideline is available to read here.
This study explored anaesthesia and post-partum pain management for PAS. This study was divided into two parts: in the first part of this study, women with a history of PAS were asked about their lived experience of anaesthesia and post-partum pain management. In the other part of this study, we invited healthcare providers involved in PAS care (both surgeons and anaesthesiologists) to tell us about their experience of providing this care. Both parts of the study were carried out as online surveys.
The healthcare provider experience is described below under “Anaesthesia care: the healthcare provider experience”
347 women responded to the survey from all over the world; mostly from Europe and Latin America. The survey was available in both English and Spanish. Most women (75%) had a caesarean hysterectomy, and general anaesthesia was the most common form of anaesthesia (40%).
We found women want to be involved in decisions around their care, but did not always fully understand or appreciate all of the consequences of this decision-making, such as missing the birth of their child. We make several recommendations to ensure women are included in decisions around their care, including an ante-natal anaesthesiology consultation. We found women wanted to be provided with information, have their preferences explored and were keen to be involved in developing a plan of care for the birth. Many women seemed accepting of the complex and dynamic situation of a pregnancy complicated by PAS, and being informed helped them to cope with uncertainty and accept changes to their care plan if an emergency arose. We also found a small percentage of women who preferred to defer to the expertise of the team, and how it’s important for clinicians to recognise women who prefer not to play an active role in decision-making because repeating information that they find stressful can add to the trauma of the experience.
We found preferences for primary mode of anaesthesia used by healthcare providers varied with approximately a third using regional anaesthesia only (such as a spinal or an epidural) and a third using a combination of regional and general anaesthesia. We also found there were differences in what healthcare providers felt women in their care were seeking in terms of choice, autonomy and decision-making.
We used the results from this study, and the patient experience study, to develop a decision aid (included in supplementary materials of this article) for making decisions around anaesthesia care in PAS. A decision aid is a tool to allow patients to participate in decision-making when facing choices on healthcare options, and aims to empower them to be more involved in their care. The decision aid was developed along with patient advocates from Placenta Accreta Ireland and the National Accreta Foundation. We hope this may be useful to align the considerations and preferences of both the healthcare provider and the patient, ensuring the final decision is agreed in partnership and the patient feels more informed, prepared and empowered.
A multi-disciplinary team (MDT) was established at the National Maternity Hospital (NMH) in June 2017. The MDT provides specialist care for all women with a suspected or confirmed diagnosis of PAS who are attending the NMH or are referred from other units.
The PAS multidisciplinary meeting is held monthly with various specialists in attendance including fetal maternal-medicine, gynae-oncology, radiology and anaesthesiologists. The meeting allows for a team discussion of all women who have a suspected diagnosis PAS. An individualised care plan is put in place and a lead consultant assigned to oversee the care of the woman. A plan for elective delivery is made, usually between 34-36 weeks, with a contingency plan in case an emergency delivery is necessary.
In order to assess whether the implementation of the MDT service has improved outcomes for mothers with a diagnosis of PAS, all women managed in the first two years of the MDT (2017-2019) were compared to women with PAS cared for at the NMH in the 10 years (2006-2016) before MDT care. The study included 60 women, 32 of whom were cared for before the MDT was established and 28 women managed as part of the MDT. The study had a number of key findings.
Firstly, in keeping with world-wide trends, there was a large increase in the number of women diagnosed with PAS during the study period – there were almost as many women diagnosed with PAS between 2017-2019 as in the previous 10 years. Furthermore, women managed as part of the MDT were much more likely to have been diagnosed during their pregnancy (on ultrasound and/or MRI) – only 56% of women were diagnosed during pregnancy before MDT care compared to over 90% of women cared for as part of the MDT. This is hugely important as it allows the appropriate plans to be put in place to ensure a safe birth with the right specialists present.
Women with a diagnosis of PAS will need to give birth by caesarean section, and in some cases undergo hysterectomy (removal of the womb) at the same time. As this surgery can be associated with significant complications, mostly related to bleeding and injury to other organs, as part of MDT care a standardised surgical approach is followed for each case with a specialist surgeon performing the operation. Women lost significantly less blood at or around the time of birth compared to those managed before the MDT was started, losing on average of 2 litres less blood during the birth. As a result, women were also much less likely to need a blood transfusion as part of MDT care with less than half of women requiring a blood transfusion. For women that did need a transfusion, they needed much less blood transfused (average of 1 unit of blood compared to 4 before MDT care).
Overall, women cared for since the MDT service began are more likely to be diagnosed during pregnancy, have a planned delivery with less blood loss and are less likely to need a blood transfusion.
Since the publication of this data, the MDT has expanded to include specialists in the Rotunda and Mater hospitals. Currently, a joint MDT is held monthly where teams from the Rotunda and NMH discuss all women with PAS attending both hospitals.
This study investigated if being diagnosed with PAS had an impact on the growth of the baby during pregnancy.
53 women who were cared for in two hospitals in Ireland were included. The study found that having a diagnosis of PAS did not increase the risk of having a growth restricted baby.
This is reassuring information for women with PAS that their baby is not at higher risk of being born small.