NEY colleagues share learnings from the fetal genomics transformation project at the RCOG World Congress 2023.

Representing a multi-disciplinary team, Abigail Hyland, Angela Lightfoot and Denise Barnes presented at the Royal College of Obstetricians and Gynaecologists (RCOG) World Congress in London on 12-14 June 2023.

Angela Lightfoot (Lead Midwife Fetal Medicine, Royal Victoria Infirmary), Denise Barnes (Lead Genomics Midwife, NEY GMS) and Abigail Hyland (Obstetric and Gynaecology Registrar, Bradford Teaching Hospitals NHS Foundation Trust), are part of the team who led the fetal genomics transformation project.

Their project indicates that:

  • Maternity colleagues recognise the relevance of genomics in their role, and that educational resources could satisfy their interest to learn more and help to increase early referrals to the clinical genetics team
  • Bespoke videos developed to support parental education on prenatal genomic testing are easy to understand and could save clinicians’ time
  • Best practice in genomic bereavement care that is equitable for all could be achieved through national agreement on what it should encompass

From literacy to legacy – supporting genomics in the maternity workforce

Genomics is emerging within everyday healthcare. In maternity care, a family’s access to the advancing abilities of genomic investigations relies on an informed workforce. As part of the Fetal Genomics Transformation Project (FGTP) across North East and Yorkshire (NEY), we wanted to demonstrate the current understanding of genomics in the maternity workforce and support interventions to increase the current referral rate into perinatal genomics services.

A literacy survey completed by 117 maternity colleagues revealed that an overwhelming majority (91% and 76%, respectively) were aware of genomics and its relevance to their role.  It also revealed that 94 per cent were interest in learning more.  However, 68% did not know how to refer into their local clinical genetics services.

To meet their learning needs, we developed:

  • An email approach for early referrals to the clinical genetics team (Genetics Advice in Pregnancy (GAP)) 
  • Educational videos, flashcards and a poster for colleagues

You can access the staff resources here.

Strengthening parental knowledge to aid valid consent: a prenatal genomic videography series

Understandably parental distress and anxiety levels are high following referral to a Fetal Medicine Unit during pregnancy.  To answer common questions and help to empower parents, we designed a series of three educational videos.

Qualitative analysis through parent and staff two-way focus groups demonstrated that the resources are easily understandable, pitched at the correct level of understanding and delivered both sensitively and compassionately.

We were also able to translate the resources into the most common languages spoken in the NEY region.

100% of staff involved in the pilot recommended their use in clinical practice. Early quantitative data reflects a reduction in clinician time when counselling and consenting for invasive prenatal genomic testing within the fetal medicine clinic consultation.

You can access the resources here.

Genomic bereavement care for pregnancy loss: A modified Delphi study

With 25 per cent of all pregnancies sadly ending in loss, bereavement care is a cornerstone of maternity services.  To inform best practice guidance for genomic bereavement care that is equitable for all who access it, we are undertaking a Delphi consensus.

Input from bereavement midwives, laboratory scientists, perinatal pathologists, clinical geneticists and fetal medicine specialists from across England is being used to establish a national perspective on what genomic bereavement care should encompass.

Our intention is to publish the results of this study in a peer-reviewed journal and provide valuable input into the NHS’ five-year genomics plan.