Published on 17 November 2020

Anxiety over unanswered questions to be addressed following study part-funded by DRWF.

A new study published today (17th November), part-funded by the Diabetes Research & Wellness Foundation (DRWF), has revealed the top 10 unanswered questions of pregnant women living with diabetes.

The study by researchers at the University of Oxford has been undertaken to ensure future research is centred on the greatest needs of those affected and not on assumptions.

The study part-funded by DRWF invited women with diabetes to provide their feedback to improve available information about diabetes and pregnancy.

Diabetes And Pregnancy Survey Promo Pic 1

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, said: “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.”

Around 38,000 women with diabetes give birth in the UK each year (5% of pregnancies) 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 welcomed the findings: “We are pleased to have co-funded 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.”

Dr Goher added: “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 programmes. 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 10 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.”

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The 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 10 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 at the 2020 Diabetes UK Professional Conference today (17th November).

The project team said it would like to thank everyone who contributed through the surveys and took part in the final workshop, the PSP funders and the many people and organisations who supported at various stages throughout the project, without whom this project would not have been successful.

Dr Eleanor Kennedy, DRWF Research Manager, said: “Diabetes and pregnancy is an important issue to many women, whether it is pregestational diabetes or pre-existing diabetes in pregnancy or so-called gestational diabetes, such as diabetes that you are diagnosed with during pregnancy.

“The risks to the mother and baby during pregnancy are significant and it is vital that women with diabetes who are pregnant or who are planning a family can input to and be helped through research like this to understand as much as possible about their own health and wellbeing and that of their baby too.”

The project is funded by the Diabetes Research & Wellness Foundation, the University of Oxford John Fell Fund and the Nuffield Department of Population Health, in partnership with the Diabetes Research & Wellness Foundation, the James Lind Alliance, JDRF Diabetes UK, the Oxford Biomedical Research Centre, and the Oxford Centre for Diabetes, Endocrinology and Metabolism, healthcare professionals, and people who have lived experience of diabetes and pregnancy.

Find out more about the study here
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