Information needs and experiences from pregnancies complicated by hypertensive disorders: a qualitative analysis of narrative responses.

BACKGROUND: Incorporation of the patient voice is urgently needed in a broad array of health care settings, but it is particularly lacking in the obstetrical literature. Systematically derived information about patients' experience with hypertensive disorders of pregnancy (HDP), most notably preeclampsia, is necessary to improve patient-provider communication and ultimately inform patient-centered care and research. We sought to examine the information needs and experiences of individuals with pregnancies complicated by hypertensive disorders. METHODS: We conducted a qualitative content analysis of narrative-responses to an open-ended question from the Preeclampsia Registry (TPR), an online registry hosted by the Preeclampsia Foundation. Individuals were invited to enroll in TPR via social media, web searches, and newsletters. We restricted our analysis to participants who self-reported a history of HDP and responded to the open-ended question, "Is there any information that you could have had at the time of this pregnancy that would have been helpful?". Available responses from July 2013 to March 2017 were included. Narrative responses were coded, reconciled, and thematically analyzed by multiple coders using an inductive approach. Our main outcome measures included participants' expressed needs and additional concerns with respect to their HDP pregnancy. RESULTS: Of 3202 enrolled participants, 1850 completed the survey and self-reported having at least one pregnancy complicated by HDP, of which 895 (48.4%) responded to the open-ended question. Participants delivered in the United States (83%) and 27 other countries. Compared to non-responders, responders reported more severe HDP phenotypes and adverse offspring outcomes. We identified three principal themes from responses: patient-identified needs, management and counseling, and potential action. Responses revealed that participants' baseline understanding of HDP, including symptoms, management, therapeutic strategies, and postpartum complications, was demonstrably lacking. Responders strongly desired improved counseling so that both they and their providers could collaboratively diagnose, appropriately manage, and robustly and continuously communicate to facilitate a partnership to address any HDP complications. CONCLUSIONS: Participants' responses regarding their HDP experience provide indispensable insight into the patient's perspectives. Our study suggests that improved education regarding possible HDP complications and transparency about the consideration of HDP and its associated outcomes during an evaluation are needed, and efforts to implement these strategies should be sought. TRIAL REGISTRATION: The Preeclampsia Registry: NCT02020174.

Women's attitudes, beliefs and values about tests, and management for hypertensive disorders of pregnancy.

BACKGROUND: Advances in research suggest the possibility of improving routine clinical care for preeclampsia using screening (predictive) and diagnostic tests. The views of women should be incorporated into the way in which such tests are used. Therefore, we explored the views of women with experience of preeclampsia and other hypertensive disorders in pregnancy (HDPs) about predictive and diagnostic tests, treatment risks, and expectant management. METHOD: Eight hundred and seven women with experience of preeclampsia or other HDPs completed an online questionnaire. These women were participants in the Preeclampsia Registry (USA). The questionnaire contained 22 items to elicit women's views about predictive tests (n = 8); diagnostic tests (n = 5); treatment risks (n = 7), and expectant management (n = 2). An optional text box allowed participants to add qualitative open-ended comments. Levels of agreement with the statements were reported descriptively for the sample as a whole, and a preliminary investigation of the role of lived experience in shaping women's views was conducted by comparing subgroups within the sample based on time of HDP delivery (preterm/term). The qualitative data provided in the optional text box was analysed using inductive thematic analysis to examine participants' responses. RESULTS: Women generally favored predictive and diagnostic testing, although not because they would opt for termination of pregnancy. Participants generally disagreed that taking daily low-dose aspirin (LDA) would make them nervous, with disagreement significantly higher in the preterm delivery subgroup. A high proportion of participants, especially in the preterm delivery subgroup, would take LDA throughout pregnancy. The majority of participants would be more worried about the possibility of preeclampsia than about the risks of treatments to their health (60%), and that proportion was significantly higher in the preterm delivery subgroup. There were no differences between subgroups in the views expressed about expectant management, although opinion was divided in both groups. Overall, most participants opted to put the baby's interests first. CONCLUSION: Women with experience of hypertensive disorders were enthusiastic about improved predictive and diagnostic tests. However, varied views about treatment options and expectant management suggest the need for a shared decision-making tool to enable healthcare professionals to support pregnant women's decision-making to maximize the utility of these tests and interventions.

Cardiomyopathy and Preeclampsia.

BACKGROUND: Preeclampsia is associated with diastolic dysfunction, peripartum cardiomyopathy, and both pre-existing and subsequent maternal cardiovascular disease. Gene mutations causing idiopathic cardiomyopathy were recently implicated in peripartum cardiomyopathy. We sought to determine whether cardiomyopathy gene mutations are also a contributory factor in preeclampsia. METHODS: Subjects were participants in The Preeclampsia Registry and Biobank. After providing informed consent, subjects with a history of preeclampsia completed a detailed questionnaire and provided medical records for diagnostic confirmation. Saliva samples were collected for DNA isolation. Whole exome sequencing was performed to detect rare variants (minor allele frequency of <0.1%) in 43 genes associated with cardiomyopathy. Missense variants were deemed damaging missense if so classified by any of 7 standard function prediction algorithms. Variants were defined as loss-of-function if they caused a stop-gain, splicing, or frame-shift insertion or deletion. Results were compared with data from 2 control groups: unrelated women with a gynecologic disorder sequenced using the same methods and instruments (n=530) as well as published variant data from 33 000 subjects in the Exome Aggregation Consortium. Preeclampsia was not excluded in control groups. RESULTS: Of 181 subjects with confirmed preeclampsia, 96% were white. Seventy-two percent had ≥1 preterm preeclampsia delivery <37 weeks. Among preeclampsia subjects, whole exome sequencing demonstrated 10 rare loss-of-function variants and 228 rare damaging missense variants in the 43 cardiomyopathy genes considered. The prevalence of these loss-of-function variants was significantly higher in preeclampsia subjects (5.5%) compared with the local control (2.5%) population ( P=0.014). Sixty-eight percent of women with preeclampsia carried ≥1 loss-of-function or damaging missense variant (mean of 1.94 mutations). As seen with peripartum cardiomyopathy, most mutations (55%) were found in the TTN gene. Seventy-three percent of preeclampsia subjects had TTN mutations in the preeclampsia cohort versus 48% in local controls ( P=1.36E-11). DISCUSSION: Women who develop preeclampsia are more likely to carry protein-altering mutations in genes associated with cardiomyopathy, particularly in TTN. Mutations promoting cardiomyopathy are prevalent in preeclampsia, idiopathic cardiomyopathy, and peripartum cardiomyopathy, and they are important risk factors for a widening spectrum of cardiovascular disorders. Detecting these variants should allow more specific diagnosis, classification, counseling, and management of women at risk.

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.

HMOX1 Genetic Polymorphisms Display Ancestral Diversity and May Be Linked to Hypertensive Disorders in Pregnancy.

Racial disparity exists for hypertensive disorders in pregnancy (HDP), which leads to disparate morbidity and mortality worldwide. The enzyme heme oxygenase-1 (HO-1) is encoded by HMOX1, which has genetic polymorphisms in its regulatory region that impact its expression and activity and have been associated with various diseases. However, studies of these genetic variants in HDP have been limited. The objective of this study was to examine HMOX1 as a potential genetic contributor of ancestral disparity seen in HDP. First, the 1000 Genomes Project (1 KG) phase 3 was utilized to compare the frequencies of alleles, genotypes, and estimated haplotypes of guanidine thymidine repeats (GTn; containing rs3074372) and A/T SNP (rs2071746) among females from five ancestral populations (Africa, the Americas, Europe, East Asia, and South Asia, N = 1271). Then, using genomic DNA from women with a history of HDP, we explored the possibility of HMOX1 variants predisposing women to HDP (N = 178) compared with an equivalent ancestral group from 1 KG (N = 263). Both HMOX1 variants were distributed differently across ancestries, with African women having a distinct distribution and an overall higher prevalence of the variants previously associated with lower HO-1 expression. The two HMOX1 variants display linkage disequilibrium in all but the African group, and within EUR cohort, LL and AA individuals have a higher prevalence in HDP. HMOX1 variants demonstrate ancestral differences that may contribute to racial disparity in HDP. Understanding maternal genetic contribution to HDP will help improve prediction and facilitate personalized approaches to care for HDP.

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.