The Economic Impacts of Stillbirth in Australia

We know that it is not possible to put a simple dollar number on the loss of an infant through stillbirth as it has devastating impacts on families. It has a profound emotional impact on those directly affected and the community more generally. Unfortunately, the causes of stillbirth are poorly understood. This complicates the development of effective strategies to reduce the risk and effects of stillbirth.

While stillbirth leads to significant economic and societal costs, the economic and social impacts of stillbirth are poorly documented in Australia.
We conducted this study to shed light on this issue and to contribute to the conversation on the nature and scale of impacts associated with stillbirth.

Download the report findings here: economic-impacts-of-stillbirth-2016-pwc

Anxiety and acceptability related to participation in stillbirth research

Background: Stillbirth research is often hampered by the need to ‘protect’ both bereaved families as well as healthy pregnant women from distress resulting from recruitment by research staff. No studies have investigated anxiety levels of recently bereaved or healthy pregnant women participating in stillbirth research. The aim of this study was to assess anxiety levels and acceptability of women participating in a stillbirth case-control study.

Method:  A follow-up questionnaire was posted to all participants of the Sydney Stillbirth Study in 2012. The questionnaire assessed the anxiety level experienced by women as a result of their participation in the study. Questions related to the initial approach of the research staff; level of anxiety at time of consent and after the interview; and reasons for and satisfaction with participation. The Spielberger (STAI-6) anxiety scale and open-field responses were included.

Results: 35/103 case participants and 65/192 control participants returned the completed questionnaire. The majority participated for altruistic reasons. 20/35 (cases) and 58/65 (controls) stated they disagreed/strongly disagreed that participation in the study increased their anxiety. 1 in 5 cases reported that participation in the study increased their anxiety; however this did not affect their satisfaction. Timing of interview did not affect anxiety scale responses. (F=1.2; p=0.37) 30/35 (cases) and 63/65 (controls) stated they agreed/strongly agreed that they were satisfied participating in the study.

Conclusions: These findings suggest high levels of satisfaction amongst both case and control participants and no statistically significant increase in anxiety related to involvement in stillbirth research. ‘Protecting’ families may require further justification.

Researchers: Diana Bond, RN (ResearchOfficer, PerinatalLossEducator), Camille Raynes-Greenow, PhD,MPH(NHMRCCareerDevelopmentFellow), Adrienne Gordon, MBChB, MRCP,FRACP,MPH(Hons),PhD(Neonatologist)

To purchase this article: http://dx.doi.org/10.1016/j.midw.2015.07.005

Sleep Position, Fetal Growth Restriction, and Late-Pregnancy Stillbirth: The Sydney Stillbirth Study

Objective: There are around 2.6 million stillbirths globally per year. Maternal age, obesity and smoking account for one third of stillbirths but smoking is the only factor that can be realistically changed during pregnancy. The aim of this study was to identify potentially modifiable risk factors for late-pregnancy stillbirth.

Methods: This was a population-based matched case–control study of pregnant women at 32 weeks of gestation or greater booked into tertiary maternity hospitals in metropolitan Sydney between January 2006 and December 2011.The case group consisted of women with singleton pregnancies with ante partum fetal death in utero. Women in the control group were matched for booking hospital and expected delivery date with women in the case group. Data collection was performed using a semi-structured interview and included validated questionnaires for specific risk factors. Interviews were performed as soon as possible following recruitment to minimise recall bias. Adjusted odds ratios (ORs) were calculated for a priori specified risk factors using conditional logistic regression.

Results: There were 103 women in the case group and 192 women in the control group. Mean gestation was 36 weeks. Supine sleeping was reported by 10 of 103 (9.7%) of women who experienced late-pregnancy stillbirth and by 4 of 192 (2.1%) of women in the control group (adjusted OR6.26, 95% confidence interval [CI] 1.2–34). Women who experienced stillbirth were more likely to: have been followed during pregnancy for suspected fetal growth restriction, 11.7% compared with 1.6%); not be in paid work, 25.2% compared with 9.4%; and to have not received further education beyond high school, 41.7% compared with 25.5%.  It must be stressed that back sleeping in itself was not a cause of death, as all these babies had other identifiable causes.

Conclusion: This study suggests that supine sleep position may be an additional risk for late-pregnancy stillbirth in an already compromised baby. The clinical management of suspected fetal growth restriction should be investigated further as a means of reducing late stillbirth.

Researchers: Adrienne Gordon, FRACP, PhD, Camille Raynes-Greenow, MPH, PhD, Diana Bond, RN,
Jonathan Morris, FRANZCOG, PhD, William Rawlinson, FRACP, PhD, and Heather Jeffery, FRACP, PhD

Read the published article:
http://journals.lww.com/greenjournal/Abstract/2015/02000/Sleep_Position,_Fetal_Growth_Restriction,_and.10.aspx

Caring for families experiencing stillbirth: Evidence-based guidance for maternity care providers

This paper presents the implications for practice that were developed from the review project to promote and inform meaningful and culturally appropriate evidence-informed practice amongst maternity care providers caring for mothers and families who experience stillbirth. The implications for practice were developed from the findings of the review and expert consensus. These recommendations may be used to guide the actions, communication, and behaviours of maternity care providers providing care to parents who experience stillbirth.

Background

Evidence-based guidance is needed to inform care provided to mothers and families who experience stillbirth. This paper focuses upon how meaningful and culturally appropriate care can be provided to mothers and families from when they are informed that their baby will be stillborn to many years after the experience. Avoidable suffering may be occurring in the clinical setting.

Aims

To promote and inform meaningful and culturally appropriate evidence-informed practice amongst maternity care providers caring for mothers and families who experience stillbirth.

Methods

A comprehensive systematic review was conducted which primarily synthesised relevant qualitative research studies. An expert advisory group comprised of stillbirth researchers, clinicians, and parents who have experienced stillbirth provided guidance for the review and the development of implications for practice.

Findings

Grieving parents want staff to demonstrate sensitivity and empathy, validate their emotions, provide clear, information, and be aware that the timing of information may be distressing. Parents want support and guidance when making decisions about seeing and holding their baby. Sensitivity, respect, collaboration, and information are essential throughout the experience of stillbirth. Culturally appropriate care is important and may require staff to accommodate different cultural practices.

Conclusion

The findings of the review and expert consensus inform the provision of meaningful and culturally appropriate care for mothers and families that have experienced stillbirth. Evidence informed implications for practice are provided to guide the actions, communication, and behaviours of maternity care providers.

Journal: ‘Women and Birth’ – The Journal of the Australian College of Midwives.

Researchers: Micah D.J. Peters, Karolina Lisy, Dagmara Riitano, Zoe Jordan, Edoardo Aromataris (The Joanna Briggs Institute, Faculty of Health Sciences, The University of Adelaide, Adelaide, South Australia 5005, Australia)

 The full report can be purchased here:

http://www.womenandbirth.org/article/S1871-5192%2815%2900080-3/abstract

Other papers/mentions include:

Peters MDJ, Lisy K, Riitano D, Jordan Z, Aromataris E. Caring for families experiencing stillbirth: Evidence-based guidance for maternity care providers. Women and Birth. 2015. 28(4):272-278. doi: 10.1016/j.wombi.2015.07.003

http://www.sciencedirect.com/science/article/pii/S1871519215000803

Peters MDJ, Lisy K, Riitano D, Jordan Z, Aromataris E. Providing meaningful care for families experiencing stillbirth: a meta-synthesis of qualitative evidence. Journal of Perinatology. 2016. 36(1)3-9. doi: 10.1038/jp.2015.97

http://www.nature.com/jp/journal/v36/n1/full/jp201597a.html

Lisy K, Peters MDJ, Riitano D, Jordan Z, Aromataris E. Provision of Meaningful Care at Diagnosis, Birth, and after Stillbirth: A Qualitative Synthesis of Parents’ Experiences. Birth: Issues in Perinatal Care. 2016. (E-pub ahead of print). doi: 10.1111/birt.12217

https://selfpropelled.com.au/2015/11/1791/

 

 

Providing meaningful care for families experiencing stillbirth: a meta-synthesis of qualitative evidence

This paper presents the results of one meta-synthesis from the systematic review report and covered the experience of stillbirth from diagnosis until many years later. Emerging themes that underpinned the meaningfulness of care provided to parents experiencing stillbirth included: information provision, the need for emotional support and appropriate maternity ward environments and systems. Elements of care that were experienced as meaningful from the perspective of parents were explored to provide understanding of how parents experience care and what may help or hinder parents’ experience of distress, anxiety, and grief throughout the experience of stillbirth.

Objective:

The objective of this study was to explore the meaningfulness of non-pharmacological care experienced by families throughout the experience of stillbirth from diagnosis onwards.

Study Design:

A comprehensive systematic review was conducted. Multiple sources were searched for relevant studies including gray literature. Studies were included if they reported the experiences of families with the care they received throughout the experience of stillbirth, from diagnosis onwards. Studies were assessed for methodological quality prior to inclusion. Qualitative findings were extracted from included studies and pooled using a meta-aggregative approach. This paper reports the results of one meta-synthesis from the systematic review.

Results:

Ten qualitative studies of moderate to high quality informed this meta-synthesis. The meta-aggregative synthesis included 69 findings that informed the development of 10 categories and one final, synthesized finding. Emerging themes that underpinned the meaningfulness of care provided to parents experiencing stillbirth included: information provision, the need for emotional support and appropriate maternity ward environments and systems.

Conclusion:

The results of this meta-synthesis revealed the elements of care that were experienced as meaningful from the perspective of parents who had experienced stillbirth. Exploration of these elements has provided important detail to underpin a growing understanding of how parents experience care and what may help or hinder parents’ experience of distress, anxiety and grief throughout the experience of stillbirth.

Journal: Journal of Perinatology, doi:10.1038/jp.2015.97

Researchers: M D J Peters, K Lisy, D Riitano, Z Jordan and E Aromataris

 The full report can be purchased here:

http://www.womenandbirth.org/article/S1871-5192%2815%2900080-3/fulltext

Developing a biomarker blood test at 28 weeks to identify pregnancies at high risk of fetal growth restriction and stillbirth

Fetal growth restriction (FGR) can reflect a clinical situation where the placenta is working poorly, leading to a fetus that is suboptimally grown. Importantly, FGR is strongly associated with stillbirth risk. It is therefore an important clinical surrogate marker of stillbirth.
In this study, the mRNA in the mum’s blood at 28 weeks that could identify those at higher risk of developing FGR later in the pregnancy was measured. For such pregnancies, the clinicians could offer timely delivery and thereby decrease the burden of stillbirth.

 

Key outcomes:

• Identification of mRNA coding six genes are differentially expressed in the blood of mothers as early as 28 weeks, who are destined to develop FGR at term.

• This test can identify 67% of all cases of term FGR (sensitivity of 67%).

• The accuracy of this test probably just falls short of being sufficiently accurate to be adopted clinically. However, it forms the basis of a predict test where further studies could find other molecules to enhance its accuracy.

The University of Melbourne is undertaking exactly such further studies. Using these same samples, genomewide microarray studies to look more broadly are undertaken, to find new mRNAs that may be differentially regulated in association with FGR. Additionally, other microarray studies to look at a different RNA species called microRNAs are undertaken as well.

• The research team believes this work provides an important fundamental biological insight into FGR that is clinically noticed only at term. The data suggests that the biological process of FGR is already happening by 28 weeks gestation. This opens the door to the rationale of developing therapies that could be applied during the last trimester of pregnancy since the pathology causing term FGR is already unfolding during this period. They think this is a novel insight into the biological development of FGR.

• The researchers believe this work identifies six important molecules that may be involved in the biology of FGR. They are now actively undertaking further laboratory studies to further examine what biological roles these molecules may have at the level of the placenta. It is possible that such studies could enhance the biological understanding how FGR (and hence stillbirth) develops.

 

The full report can be reviewed here:

Developing a biomarker blood test at 28 weeks to identify pregnancies at high risk of fetal growth restriction and stillbirth

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Amount granted: $74,000

Research institution: University of Melbourne and Mercy Hospital for Women

Chief Investigator: Associate Professor Stephen Tong

Other Investigators:  Dr Clare Whitehead

 

Major risk factors for stillbirth in high-income countries: a systematic review and meta-analysis

The Stillbirth Foundation has partly funded a research project of the Mater Medical Research Institute, South Brisbane, QLD, Australia.

Background
Stillbirth rates in high-income countries have shown little or no improvement over the past two decades. Prevention strategies that target risk factors could be important in rate reduction. This systematic review and meta-analysis was done to identify priority areas for stillbirth prevention relevant to those countries.

Methods
Population-based studies addressing risk factors for stillbirth were identified through database searches. The factors most frequently reported were identified and selected according to whether they could potentially be reduced through lifestyle or medical intervention. The numbers attributable to modifiable risk factors were calculated from data relating to the five high-income countries with the highest numbers of stillbirths and where all the data required for analysis were available. Odds ratios were calculated for selected risk factors, from which population-attributable risk (PAR) values were calculated.

Findings
Of 6963 studies initially identified, 96 population-based studies were included. Maternal overweight and obesity (body-mass index >25 kg/m²) was the highest ranking modifiable risk factor, with PARs of 8–18% across the five countries and contributing to around 8000 stillbirths (≥22 weeks’ gestation) annually across all high-income countries. Advanced maternal age (>35 years) and maternal smoking yielded PARs of 7–11% and 4–7%, respectively, and each year contribute to more than 4200 and 2800 stillbirths, respectively, across all high-income countries. In disadvantaged populations maternal smoking could contribute to 20% of stillbirths. Primiparity contributes to around 15% of stillbirths. Of the pregnancy disorders, small size for gestational age and abruption are the highest PARs (23% and 15%, respectively), which highlights the notable role of placental pathology in stillbirth. Pre-existing diabetes and hypertension remain important contributors to stillbirth in such countries.

Interpretation
The raising of awareness and implementation of effective interventions for modifiable risk factors, such as overweight, obesity, maternal age, and smoking, are priorities for stillbirth prevention in high-income countries.

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Please find the full publication here:

Major risk factors for stillbirth in high-income countries a systematic review and meta-analysis

Free foetal DNA, Placental Apoptosis and the Predication of Late Stillbirth

Despite improvements in obstetric care, rates of late stillbirth are essentially the same in 2009 as they were 50 years ago. In the majority of cases, a cause of stillbirth is never identified and because of this, obstetricians have been unable to predict and prevent these events. One theory suggests that fetal death results from a catastrophic failure of the placenta maturing beyond its lifespan.

This novel study investigated this theory using a new molecular test that had only recently become available in Australia. As the placenta fails, pieces of DNA become detached and cross into the mother’s blood stream, and it is now recognised that those pieces of DNA came from the baby and placenta, rather than the mother.

The investigators planned to use this test to show how much of the placenta has failed, which could potentially predict whether the fetus is at risk if the pregnancy continues. The initial work of this project will be used to demonstrate that this theory holds true, and if so, in later studies this team plan to examine how well this test performs in predicting which pregnancies are at risk, and whether bad outcomes can be prevented. Conclusive results are not yet available.

Amount granted: $19,357

Research institution: Royal Prince Alfred Hospital

Chief Investigator: Clinical Professor Jonathan Hyett

Other Investigators: Dr Glenn Gardener, Associate Professor Catherine Hyland, Dr Susan Arbuckle

Maternal sleep health and fetal outcomes

Dr Alison Fung and her co-researchers at the Mercy Hospital for Women in Melbourne have been investigating the impact of Obstructive Sleep Apnoea on fetal growth and well being.

Obstructive sleep apnoea is a condition that occurs when the upper airways collapse during sleep, causing airway obstruction and resulting in low oxygen levels in the mother’s blood stream, called hypoxia.  When oxygen levels become sufficiently low, the mother will awake from sleep, and this arousal will result in recommencement of breathing. These episodes can occur time and time again every hour overnight. The consequences of these recurrent episodes of hypoxia include sensitisation of the sympathetic nervous system causing high blood pressure, inflammation of blood vessels and sleep fragmentation.

Given the important ‘whole body’ effects of Obstructive Sleep Apnoea, it is important to consider whether these recurrent episodes may also impact on placental function and, therefore, fetal growth and well being. For this reason, Alison and her colleagues screened 371 women for symptoms of sleep apnoea, and then performed formal sleep studies on a subset of these women to determine whether they had Obstructive Sleep Apnoea. In all of these women, growth was measured with ultrasound during late pregnancy to see if the babies of women with Obstructive Sleep Apnoea were more likely to experience impaired fetal growth in late pregnancy than women who did not have Sleep Apnoea during the sleep study.

This study found that fetuses of women with Obstructive Sleep Apnoea were more likely to experience impaired fetal growth in late pregnancy; this suggests that Obstructive Sleep Apnoea may impair placental exchange of oxygen and nutrition to the baby. This is an important finding because it is known that obese women are more likely to have Obstructive Sleep Apnoea, and these women are also more likely to suffer stillbirth. Further, if these findings are confirmed in larger studies, it would suggest that Sleep Apnoea might be a mechanism by which obesity increases stillbirth risk. If so, this is a particularly exciting finding as Sleep Apnoea can be treated during pregnancy and this may prove an important therapy amongst women with severe Sleep Apnoea to reduce stillbirth risk.

 

Amount granted: $20,500

Research institution: Mercy Hospital for Women, Melbourne

Chief Investigators: Dr Alison Fung, Associate Professor Sue Walker, Dr Maree Barnes

Other Investigators: Dr Helen Esdale, Ms Danielle Wilson

Assessing the reporting of stillbirths in population data: trends and recurrence

This study aimed to link the information captured about stillbirths through several population-based datasets. The findings will potentially identify sub-groups of women at increased risk of stillbirth who might benefit from closer surveillance, identify risk factors for stillbirth that may be modifiable, help information policy and plan maternity care services to improve the management of at-risk pregnancies, identify ways to improve the collection of stillbirth data, and generate new research questions to better understand and prevent stillbirths in the future.

Although this study has been completed, a final report has not been yet made public, pending publication in a scientific journal.

Amount granted: $65,000

Research institution: Kolling Institute, University of Sydney

Chief Investigator: Associate Professor Christine Roberts

Other Investigators: Ms Jillian Patterson, Dr Samantha Lain, Associate Professor Jane Ford, Associate Professor Angela Todd, Professor Jonathan Morris