by Jane Brewin
2 Dec 2015
New research led by Dr Alex Heazell, Clinical Director of the Tommy’s Centre, Manchester, brought doctors, midwives, parents, third sector organisations, funders and pathologists together under the Stillbirth Priority Settings Partnership. Published today, the results identify 11 key priorities for research into the reduction of stillbirth and improving care for parents who have experienced a stillbirth.
At Tommy’s, we are proud to have funded the survey, which will put those directly affected by stillbirth at the heart of future research. It will help to focus research on answering those questions which are most important to prevent it happening and looking after parents who experience stillbirth.
For the first time, people affected by stillbirth have had the chance to provide their opinion in setting research priorities. The aim of the partnership is to ensure that future stillbirth research brings the greatest possible benefit to people who are affected by stillbirth, both parents and medical staff, by identifying what unanswered questions are of the greatest importance to them.
Parents, families and clinicians were invited to submit questions and research priorities related to stillbirth. More than 1600 responses were received, and the top research questions incorporated understanding why babies die, preventing stillbirths, and improving care for mothers and babies.
In the end the steering group chose a list of 11 questions, which included an emphasis on the content and delivery of health services:
- How can the structure and function of the placenta be assessed during pregnancy to detect potential problems and reduce the risk of stillbirth?
- Does ultrasound assessment of fetal growth in the thirdtrimester reduce stillbirth?
- Do modifiable ‘lifestyle’ factors (e.g. diet, vitamindeficiency, sleep position, sleep apnea, lifting andbending) cause or contribute to stillbirth risk?
- Which investigations identify a fetus at risk of stillbirthafter a mother believes she has experienced reduced fetal movements?
- Can the wider use of existing tests and monitoringprocedures, especially in later pregnancy, and the development and implementation of novel tests (biomarkers) in the mother or in early pregnancy, help prevent stillbirth?
- What causes stillbirth in normally grown babies?
- What is the most appropriate bereavement and postnatal care for both parents following a stillbirth?
- Which antenatal care interventions are associated with a reduction in the number of stillbirths?
- Would more accessible evidence-based information on signs and symptoms of stillbirth risk, designed to empower women to raise concerns with healthcare professionals, reduce the incidence of stillbirth?
- How can staff support women and their partners in subsequent pregnancies, using a holistic approach to reduce anxiety, stress and any associated increased visits to healthcare settings?
- Why is the incidence of stillbirth in the UK higher than in other similar high-income countries, and what lessons can we learn from this?
Dr Alex Heazell, who is also a Senior Clinical Lecturer in Obstetrics at The University of Manchester explains: “Research has an important role to play in the reduction of stillbirths. Our work has involved patients, clinicians, charity and other key stakeholders identifying priorities which has resulted patient-centred work research priorities. “We hope that the questions that we identified will shape the stillbirth research agenda and act as a catalyst for future research and funding.”
A summary document including the 11 questions can be found here www.stillbirthpsp.org.uk.
The full article is published in the Ultrasound in Obstetrics and Gynecology journal, which validates the importance of these priorities to the clinical and research community.
The Stillbirth Priority Setting Partnership was co-ordinated by Dr Alex Heazell, with the support of the James Lind Alliance and funding from Tommy’s.
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The Tommy's Rainbow Clinic is part of the Tommy's Stillbirth Research Centre at St Mary's Hospital in Manchester. It provides specialist care for women who have suffered a previous stillbirth or neonatal death.
The Placenta Clinic, run as part of the Tommy's Stillbirth Research Centre at St Mary's Hospital in Manchester, is the largest placenta-focused research group in the world.
Tommy’s research centre at St Mary’s Hospital opened in 2001 and is now home to around 100 clinicians and scientists researching the causes of stillbirth.
My world had crashed. My baby could not have died. I was still pregnant, they must be wrong. Nobody is available to help me. What will I tell my Mum? What have I done wrong?
To us, she was perfect and the love we felt for her stronger than I had ever understood possible. In spite of our grief, we would never change our experience of knowing and loving Aisling.
What kept me going was the thought that I was doing this for my daughter Sophie, that I was doing this in her memory.
Losing your baby is one of the worst things you can experience in your life and the pain is unimaginable.