Experiences of gestational trophoblastic disease
Research type
Research Study
Full title
Experiences of gestational trophoblastic disease: reconciling cancer, pregnancy and loss
IRAS ID
292131
Contact name
Emily Ross
Contact email
Sponsor organisation
Sheffield Teaching Hospitals Foundation Trust
Duration of Study in the UK
2 years, 6 months, 30 days
Research summary
Research Summary:
Gestational trophoblastic disease (GTD) is a rare condition that can arise following conception, causing abnormal cells to develop within the womb. In some cases this leads to a tumour. GTD can mean that though a woman may receive a positive test and experience pregnancy symptoms, she might not be carrying a baby. Some women require chemotherapy, and all must must have their hormone levels monitored for a specific amount of time. GTD poses questions about what it means to be pregnant, and challenges how we understand cancer.Experiences of GTD are poorly understood because it’s rare, but also because it can be difficult for women and their families to talk about the condition. This research will use a sociological approach to find out more about how women make sense of GTD, and how it impacts their lives and futures. Interviews will be conducted with women focusing on loss, treatment and follow-up to better understand their needs. Interviews and observations with healthcare professionals will shed light on how the condition is discussed with patients in the clinic, and how the rarity of GTD impacts care and treatment. More broadly, the research will consider how the way society perceives pregnancy and cancer might shape understandings of GTD and care. Findings will be shared with clinicians and other stakeholders, such as charities, throughout the project. The research will help clinicians and charities better understand patient experiences, and will raise awareness of the condition.
Summary of Results:
Gestational Trophoblastic Disease (GTD) is a rare condition that can follow any pregnancy event, and causes the rapid development of placental cells. In some cases it can develop into serious disease, including cancer. Little research explores patient experiences of this condition, and how these experiences are shaped by wider understandings of pregnancy and disease. In this research I took a sociological approach, one that considers the social contexts in which patients experience illness and receive care, to understand how patients make sense of GTD diagnosis and the care and support they receive. I used qualitative methods, including interviews and observations in GTD clinics and laboratories. This ran alongside some online qualitative research, ethically approved by my institution.I developed three key findings from the qualitative research: 1) the rarity of GTD impacts sense-making but also support seeking. 2) hCG monitoring can extend experiences of GTD and also position patients between pregnancy and disease. 3) The dominant view of pregnancy in our society associates this with the birth of a baby. This shapes the organisation of GTD care, the support patients can access and their understandings of and responses to diagnosis. I argue for a more expansive understanding of what pregnancy entails within our society.
These findings have been disseminated in academic presentations, a book chapter and in two academic publications currently under review. I also led two public engagement activities inspired by my research, in order to raise awareness of the project and of GTD itself. These were a workshop with patients and online art exhibition, and an animation.
REC name
West Midlands - South Birmingham Research Ethics Committee
REC reference
21/WM/0018
Date of REC Opinion
17 Feb 2021
REC opinion
Further Information Favourable Opinion