Prioritising patients in hyperemesis gravidarum research

We aimed to identify the extent to which hyperemesis gravidarum (HG) effects people’s lives during pregnancy and in future pregnancies and then to establish future research priorities in collaboration with patients and clinicians, and to map the evidence currently addressing those priorities.
Methods used to identify the effects of HG on people include a qualitative systematic review and a large-scale, mixed methods survey of over 5,000 participants. Recurrence rate was assessed with a quantitative systematic review of prospective studies and a prospective follow-up study of a well-defined cohort from a previous RCT. To establish research priorities the established James Lind Alliance methodology was followed, and the evidence map was created with software from the EPPI Centre following emerging systematic methods.
Profound physical and psychological effects of HG were identified, including suicidal ideation and termination of wanted pregnancy. Recurrence was high in subsequent pregnancy which can substantially alter people’s family plans and curtail future pregnancy completely. Patients/clinicians from 32 countries took part in submitting potential research questions which were then prioritised, and a map produced of the current literature addressing them. Most require original research to begin to address them, while some would benefit from systematic review to reduce research waste from repetitive, inconclusive studies.
Taken together this thesis presents a significant stride in improving the relevance and quality of HG research, places the patient voice centrally within it and advances progress on obtaining answers to questions that will help to improve the lives of those with HG in the future.