Patient journey during and after a pre-eclampsia-complicated pregnancy:a cross-sectional patient registry study

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<0.001) and in the proportion of responders stating they received counselling about the later-life health risks associated with pre-eclampsia (14.2% before 2011 to 25.6% after 2016; p=0.005). CONCLUSIONS: This study demonstrates that improved patient education regarding pre-eclampsia is needed, that shared decision making is of great importance to patients to enhance their healthcare experience, and that healthcare providers should make efforts to routinely incorporate counselling about the later-life health risks associated with pre-eclampsia. TRIAL REGISTRATION NUMBER: NCT02020174

Maternal and perinatal health research priorities beyond 2015 : an international survey and prioritization exercise

Background: Maternal mortality has declined by nearly half since 1990, but over a quarter million women still die every year of causes related to pregnancy and childbirth. Maternal-health related targets are falling short of the 2015 Millennium Development Goals and a post-2015 Development Agenda is emerging. In connection with this, setting global research priorities for the next decade is now required. Methods. We adapted the methods of the Child Health and Nutrition Research Initiative (CHNRI) to identify and set global research priorities for maternal and perinatal health for the period 2015 to 2025. Priority research questions were received from various international stakeholders constituting a large reference group, and consolidated into a final list of research questions by a technical working group. Questions on this list were then scored by the reference working group according to five independent and equally weighted criteria. Normalized research priority scores (NRPS) were calculated, and research priority questions were ranked accordingly. Results: A list of 190 priority research questions for improving maternal and perinatal health was scored by 140 stakeholders. Most priority research questions (89%) were concerned with the evaluation of implementation and delivery of existing interventions, with research subthemes frequently concerned with training and/or awareness interventions (11%), and access to interventions and/or services (14%). Twenty-one questions (11%) involved the discovery of new interventions or technologies. Conclusions: Key research priorities in maternal and perinatal health were identified. The resulting ranked list of research questions provides a valuable resource for health research investors, researchers and other stakeholders. We are hopeful that this exercise will inform the post-2015 Development Agenda and assist donors, research-policy decision makers and researchers to invest in research that will ultimately make the most significant difference in the lives of mothers and babies.</p

Maternal and perinatal health research priorities beyond 2015 : an international survey and prioritization exercise

Abstract Background: Maternal mortality has declined by nearly half since 1990, but over a quarter million women still die every year of causes related to pregnancy and childbirth. Maternal-health related targets are falling short of the 2015 Millennium Development Goals and a post-2015 Development Agenda is emerging. In connection with this, setting global research priorities for the next decade is now required. Methods: We adapted the methods of the Child Health and Nutrition Research Initiative (CHNRI) to identify and set global research priorities for maternal and perinatal health for the period 2015 to 2025. Priority research questions were received from various international stakeholders constituting a large reference group, and consolidated into a final list of research questions by a technical working group. Questions on this list were then scored by the reference working group according to five independent and equally weighted criteria. Normalized research priority scores (NRPS) were calculated, and research priority questions were ranked accordingly. Results: A list of 190 priority research questions for improving maternal and perinatal health was scored by 140 stakeholders. Most priority research questions (89%) were concerned with the evaluation of implementation and delivery of existing interventions, with research subthemes frequently concerned with training and/or awareness interventions (11%), and access to interventions and/or services (14%). Twenty-one questions (11%) involved the discovery of new interventions or technologies

Recruiting and retaining nulliparous individuals with a family history of hypertensive disorders of pregnancy to participate in scientific research prior to pregnancy: The Sisterhood Study

Introduction: Recruiting women with a family history (FH) of hypertensive disorders of pregnancy (HDP) to participate in research before pregnancy could offer insight into genetic and lifestyle factors that incur higher risk of cardiovascular disease during pregnancy and throughout the life course. Methods: The Sisterhood Study piloted low-touch, remote recruitment strategies that relied on women with a history of preeclampsia to share study information with family and friends. It aimed to enroll 150 women with a FH of HDP and 150 controls. Results: The study recruited 328 women (104 with a FH of HDP, 131 without a FH, and 93 with unknown FH) prior to pregnancy. The majority identified as non-Hispanic White (74.7 %) and had >high school education (91.8 %). Discussion: Although the population was enriched with nulliparous women with a FH of HDP, it was not sufficient to recruit a diverse cohort large enough to meet the study aim

Patient-reported preconceptional characteristics in the prediction of recurrent preeclampsia

Objective: To develop a prediction model for recurrent preeclampsia using patient-reported preconceptional characteristics, which can be used for risk stratification of subsequent pregnancies. Study design: Retrospective cohort study using data from The Preeclampsia Registry™ of 1028 women with a history of preeclampsia and at least one subsequent pregnancy. Main outcome measures: Candidate predictors were included in a multivariable logistic regression analysis and a backward selection procedure was used to select the final predictors. Internal validation took place by internally validating the model in 500 simulated samples (bootstrapping), which provided a shrinkage factor to create the final model. This final model was evaluated for performance by a calibration plot and the area under the receiver operating curve (AUC). Missing data was handled by multiple imputation. Results: Recurrent preeclampsia occurred in 467 (45.4%) women. Predictors in the final model were: a history of migraine, first degree relative with cardiovascular disease, first degree relative with placenta-related pregnancy complication, gestational age at delivery of index pregnancy, birthweight of the previous child, history of placental abruption, multiparity, chronic hypertension, interval between index and subsequent pregnancy, paternal non-white ethnicity and maternal age. AUC of the model was 0.63 (95% CI 0.59–0.66). In a subset of women who used aspirin prior or during their subsequent pregnancy, performance of the model was similar (AUC 0.60; 95% CI 0.50–0.71). Conclusions: In this study we developed a prediction model for recurrent preeclampsia with moderate performance after internal validation. Early risk stratification of subsequent pregnancies that allows for customization of antenatal care and personalized prevention strategies, is not yet possible