1. Patient journey during and after a pre-eclampsia-complicated pregnancy: a cross-sectional patient registry study
- Author
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Rianne C Bijl, Maria P H Koster, Ellen W Seely, Sophie E Bangert, Raj Shree, Alina N Brewer, Norlisa Abrenica-Keffer, and Eleni Z Tsigas
- Subjects
Medicine - Abstract
Objectives To gain insight into the patient journey through a pre-eclampsia-complicated pregnancy.Design Cross-sectional patient registry study.Setting Online patient registry initiated by the Preeclampsia Foundation.Participants Women with a history of pre-eclampsia enrolled in The Preeclampsia Registry (TPR).Primary and secondary outcome measures Retrospective patient-reported experience measures concerning awareness of pre-eclampsia, timing and type of information on pre-eclampsia received, involvement in decision making regarding medical care, mental/emotional impact of the pre-eclampsia-complicated pregnancy and impact on future pregnancy planning.Results Of 3618 TPR-participants invited to complete the Patient Journey questionnaire, data from 833 (23%) responders were available for analysis. Most responders were white (n=795, 95.4%) and lived in the USA (n=728, 87.4%). Before their pre-eclampsia diagnosis, 599 (73.9%) responders were aware of the term ‘pre-eclampsia’, but only 348 (43.7%) were aware of its associated symptoms. Women with a lower level of education were less likely to have heard of pre-eclampsia (OR 0.36, 95% CI 0.21 to 0.62). Around the time of diagnosis, 29.2% of responders did not feel involved in the decision making, which was associated with reporting a serious mental/emotional impact of the pre-eclampsia experience (OR 2.46, 95% CI 1.58 to 3.84). Over time, there was an increase in the proportion of women who were aware of the symptoms of pre-eclampsia (32.2% before 2011 to 52.5% after 2016; p
- Published
- 2022
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