DIABETES AND PREGNANCY IN THE UK: Women’s top 10 unanswered questions revealed to prioritise future research

38,000 women living with diabetes give birth in Britain each year

A new study published today, funded in partnership with the Diabetes Research and Wellness Foundation (DRWF), reveals the top 10 unanswered questions of pregnant women living with diabetes. The work has been undertaken to ensure future is centred on the greatest needs of those affected and not on assumptions. 

“Healthcare research is often led by industry and researchers. But there can be a mismatch between the research they do and the issues that are most important for people living with the condition, or those that support them,” says Dr Goher Ayman, project co-lead at The Diabetes and Pregnancy Priority Setting Partnership (PSP), led by the National Perinatal Epidemiology Unit (NPEU) at the Nuffield Department of Population Health, University of Oxford, 

Diabetes affects around 38,000 women giving birth in the UK and rates are rising. This can cause complications during pregnancy and birth, and may have long-term effects for mother and child, such as cardiovascular disease. The COVID-19 pandemic has put even greater pressure on resources and funding across the health sector. 

DRWF Chief Executive Sarah Tutton has welcomed the findings: “We are pleased to have cofunded this important study which recognises the need to listen to women living with diabetes to prioritise future research which addresses their major anxieties around pregnancy.

The collaborative project involving hundreds of women, their families and healthcare professionals was launched in partnership with Diabetes Research and Wellness Foundation the James Lind Alliance, Diabetes UK, JDRF the type 1 diabetes charity. 

The priorities will be shared with funding bodies, research institutes and scientific societies to use them as a starting point for deciding future research projects and programme explains Dr Goher: “When these priorities are acted on, we are making sure that research will deliver the most impact and value for women and their families, closing the loop of the process.”

The ten key priorities for diabetes and pregnancy research are:

• 1.How can diabetes technology be used to improve pregnancy, birth, and mother and child health outcomes?
• 2.What is the best test to diagnose diabetes in pregnant women?
• 3.For women with diabetes, what is the best way to manage blood sugar levels using diet and lifestyle during pregnancy?
• 4.What are the emotional and mental well-being needs of women with diabetes before, during, and after pregnancy, and how can they best be supported?
• 5.When is it safe for pregnant women with diabetes to give birth at full term compared with early delivery via induction or elective caesarean?
• 6.What are the specific postnatal care and support needs of women with diabetes and their infants?
• 7.What is the best way to test for and treat diabetes in late pregnancy i.e. after 34 weeks?
• 8.What is the best way to reduce the risk or prevent women with gestational diabetes developing other types of diabetes any time after pregnancy?
• 9.What are the labour and birth experiences of women with diabetes, and how can their choices and shared decision making be enhanced?
• 10.How can care and services be improved for women with diabetes who are planning pregnancy?

Ruth Unstead-Joss, a participant in the Diabetes and Pregnancy PSP, said: “There was a good mix of people at the Diabetes and Pregnancy PSP workshop and everyone was very respectful of each other’s thoughts and feelings. As well as women with first-hand experience of different types of diabetes during pregnancy, we also had clinicians who work on a day-to-day basis with people affected by diabetes in pregnancy. Having a diversity of perspectives was essential to generate a strong list of overall priorities. I'm hopeful that this will influence the future of research and practice, leading to better care and outcomes for women, and their babies and families.”

SURVEY

The survey was conducted between June and November 2019, with women, their families and support networks, and healthcare professionals, who were invited to submit their unanswered questions about the time before, during or after pregnancy with diabetes of any type. More than 450 people across the UK took part, submitting over 1,100 questions. The research team grouped these questions into themes and checked which had not been answered by previous research.

A long-list of 60 questions was then sent out in a second survey between May and July 2020. This asked participants to select the questions they felt were most important. The results were used to draw up a shortlist of 18 questions. At a workshop held online in October 2020, the participants jointly agreed the top ten priority research questions from the shortlist.

To date, most research has focused on gestational diabetes, which develops during pregnancy. However the ten questions reflect the entire birth journey, from planning pregnancy to postnatal support, and apply to any type of diabetes. The research team are presenting the results today at the 2020 Diabetes UK Professional Conference.

The project team says it would like to thank everyone who contributed through the surveys and took part in the final workshop, the PSP funders the Diabetes Research and Wellness Foundation and the University of Oxford (John Fell Fund and Nuffield Department of Population Health), the PSP steering group members and partners Diabetes UK, JDRF the type 1 diabetes charity, James Lind Alliance, and the many people and organisations who supported at various stages throughout the project, without whom this project would not have been successful.

ENDS