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Molar pregnancy: a qualitative study of personal experiences and societal narratives of loss

02 July 2024
Volume 32 · Issue 7



Molar pregnancy is a rare complication of pregnancy. Patients face surgery, human chorionic gonadotropin monitoring and potentially systemic treatment, resulting in unique support needs. This study's aim was to explore the impacts of gestational trophoblastic disease on embodied and emotional experience.


This qualitative study considered stories of molar pregnancy from 20 women in the UK, US, Canada and Australia. These were drawn from 18 publicly available online blogs and eight semi-structured interviews, and analysed thematically.


Three themes were developed: ‘loss’, describing women's responses to their pregnancy ending; ‘isolation’, comprising ‘rarity’, ‘lack of awareness’ and support seeking; and ‘alienation’, capturing the unfamiliarity of diagnosis, ‘failure’ and barriers to ‘moving forward’.


Experiences are shaped by wider narratives of ‘typical’ pregnancy. Patient care requires an individualised and responsive approach, and non-specialist practitioners should feel confident in discussing molar pregnancy and have access to up-to-date guidance.

Molar pregnancy, sometimes called hydatidifor m mole, is a rare complication of pregnancy and the most common form of gestational trophoblastic disease. Gestational trophoblastic disease affects around 1 in 714 live births in the UK (Royal College of Obstetricians and Gynaecologists, 2020). Less than 16% of molar pregnancies undergo malignant transformation, termed gestational trophoblastic neoplasia (Seckl et al, 2010). Follow-up treatment and support for gestational trophoblastic disease has been centralised in the UK since 1973, and is now a multidisciplinary service with a patient-centred approach (Ireson et al, 2014).

In the UK, gestational trophoblastic disease is managed across three specialist screening centres, Charing Cross Hospital (London), Weston Park Hospital (Sheffield) and Ninewells Hospital (Dundee). If staging and treatment for gestational trophoblastic neoplasia is required, patients travel to the London and Sheffield centres. The UK's registration and treatment programme has been associated with high cure rates of 98–100% (Ireson et al, 2014). The disease is monitored by regularly measuring human chorionic gonadotropin, essential to gestational trophoblastic disease diagnosis and treatment.

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