GTD-EXPLORE
Research type
Research Study
Full title
Gestational Trophoblastic Disease/Neoplasia: exploring patient and healthcare professionals’ views and experience of the current pathways to diagnosis and cure and co-produce service improvements.
IRAS ID
346189
Contact name
Victoria Parker
Contact email
Sponsor organisation
Sheffield Teaching Hospitals NHS Foundation Trust
Clinicaltrials.gov Identifier
R/177212, UoS ref
Duration of Study in the UK
0 years, 9 months, 15 days
Research summary
GTD is a serious complication of pregnancy, most commonly discovered in the first 12-weeks. Where present, the pregnancy cannot continue, and patients must have surgery. In the UK, ~1,800 patients are diagnosed with GTD every year. As the condition is fairly rare, healthcare professionals may not have the experience to diagnose or support patients. Patients often make many visits to hospitals for scans and blood tests before the diagnosis is suspected. Once diagnosed, patients come under a specialist centre. For ~6 months, patients send regular urine or blood samples to monitor the condition. One in ten patients develop GTN. This is cancerous and patients need chemotherapy at a specialist centre in Sheffield or London, with regular appointments and blood tests during this time. GTD patients should wait until the end of monitoring before trying to get pregnant again. GTN patients should wait even longer; one year after the end of chemotherapy.
Patients can find the experience of GTD and GTN devastating and overwhelming. It has physical, psychological and financial implications. Our PPI co-applicants discussed feeling post-traumatic stress from the experience. Some felt that issues with the healthcare pathway had worsened the trauma they experienced from the disease. In contrast, others felt their healthcare had been good. This indicates that current support is inconsistent, and improvements can be made. Therefore, we need to explore patients’ stories to know how to improve the pathways and experience.
We will speak to 30 patients who have experienced GTD and GTN in the last two years and recruit them via specialist hospitals in Sheffield and London. We will also speak to ~16 healthcare professionals from across the UK. Using the findings from this research, we will suggest improvements to healthcare services and hold workshops with patients, healthcare professionals, and other partners to discuss these improvements.
REC name
North West - Greater Manchester East Research Ethics Committee
REC reference
24/NW/0315
Date of REC Opinion
19 Nov 2024
REC opinion
Further Information Favourable Opinion