Experience of women on the Irish National Gestational Trophoblastic Disease Registry

Gestational Trophoblastic Disease (GTD) is a rare pregnancy related disorder and the most curable of all gynaecological malignancies. GTD comprises the premalignant conditions of complete or partial hydatidiform mole known as molar pregnancy and a spectrum of malignant disorders termed gestational trophoblastic neoplasia. Clinical management and treatment in specialist centres is essential to achieve high cure rates and clinical guidelines recommend registration with a GTD centre as a minimum standard of care. National GTD registries are valuable repositories of epidemiological data and facilitate clinical audit, centralised pathology review and human chorionic gonadotropin (hCG) monitoring. This study sought the opinion of women enrolled on the Irish National GTD registry to inform future service development and establish a knowledge base for molar pregnancy in Ireland.

A cross-sectional survey using an anonymised questionnaire was distributed by post to all women on the GTD registry. The questionnaire was designed by a multidisciplinary team and consisted of twenty-five closed-ended questions and two open-ended questions to facilitate feedback. Data collected in the survey included information on the patient experience of registration, knowledge of molar pregnancy, diagnosis at their local hospital, hCG monitoring and overall satisfaction with the service.

The survey had a successful participation rate of 42.6% (215/504). Forty-nine percent (n = 106) of respondents rated a rapid hCG result as their top priority. Forty percent (n = 84) of women had concerns about future pregnancies but acknowledged that these were largely addressed by the GTD specialist nurses. A quarter of respondents reported that other medical professionals with whom they interacted during follow-up treatment did not understand their condition. Many women commented on the emotional stress of attending their local maternity unit for phlebotomy while dealing with pregnancy loss.

This study is unique in being the first survey of women on the Irish National GTD registry. It highlights the specific needs of women with molar pregnancy in terms of psychological support, bereavement counselling and peer support groups. It reveals a knowledge gap in molar pregnancy amongst healthcare professionals which should be considered in future planning of medical and nursing curricula.