Experiences of women with hypertensive disorders of pregnancy: a scoping review.

BACKGROUND: Hypertensive disorders of pregnancy (HDP) constitute one of the leading causes of maternal and perinatal mortality worldwide, and are associated with an increased risk of recurrence and future cardiovascular disease. HDP affect women's health condition, mode of birth and timing, length of hospital stay, and relationship with their newborn and family, with future life repercussions. AIMS: To explore the experiences of women with HDP from pregnancy to postpartum, and to identify (a) their perceptions and understanding of HDP, (b) their understanding of future health risks, and (c) the possible interventions by healthcare providers. METHODS: A scoping review was conducted following the Joanna Briggs Institute method and in accordance with the PRISMA-ScR checklist. The following databases were searched from 1990 to 2020 (October): MEDLINE (PubMed), EMBASE, Cochrane Library, CINAHL, PsycINFO, and Google Scholar database. The Critical Appraisal Skills Programme (CASP) checklist was used as a guide for the qualitative analysis. Content analysis and synthesis of findings were conducted using Nvivo12. RESULTS: Of the 1971 articles identified through database searching, 16 articles met the inclusion criteria. After data extraction, content analysis yielded six categories: 'Life-threatening disorder', 'Coping with HDP', 'Concerns for baby and challenges of motherhood', 'Fear of recurrence and health problems', 'Necessity of social and spiritual support', and 'Positive and negative experiences in the healthcare context'. Women faced complex difficulties from the long treatment process while transitioning to motherhood. CONCLUSION: Our findings revealed the perceptions and understanding of women regarding HDP as a life-threatening disorder to both mothers and their babies which mothers need to cope with. Recovery of physical condition and the long-term psychological effects of HDP on women should be given attention by mothers and HCP to reduce future health risks. Importantly, a lifelong follow-up system is recommended for women with HDP.

Patient- and Health-Care-Provider-Reported Outcomes to Consider in Research on Pregnancy-Associated Venous Thromboembolism.

BACKGROUND: Venous thromboembolism (VTE) in pregnancy can have numerous adverse impacts on patients and health care systems. Ongoing research aimed at improving maternal and fetal/neonatal outcomes is hampered by the lack of patient perspective in determining which outcomes are considered important to assess the effectiveness of interventions. OBJECTIVES: The objective of this study was to elicit outcomes from those who experienced or were at risk for pregnancy-associated VTE (health service users, HSUs) and health care providers (HCPs) involved in their care. METHODS: Canadian HSUs and HCPs were recruited using convenience and purposive sampling, respectively. Individual, semistructured interviews aimed specifically at eliciting pregnancy-related outcomes were conducted until data saturation was attained. Interviews were audio-recorded and transcribed verbatim. Written transcripts were de-identified and interpretatively analyzed in duplicate to obtain outcomes related to participant experiences. Outcomes were grouped based on a taxonomy developed for medical research and compared between and across interviews with patients and HCPs, and with those obtained through a systematic review of the published literature. RESULTS AND CONCLUSION: We interviewed 10 HSUs and eight HCPs and elicited 52 outcomes, 21 of which have not been reported in the literature. Although the majority of elicited outcomes were in the clinical/physiological core outcome area, both HSUs and HCPs highlighted the importance of outcomes related to functioning/life impact and general wellbeing of mother and baby. These outcomes representing the perspectives of HSUs and HCPs should be considered while conducting trials on pregnancy-associated VTE.

The personal and clinical impact of screen-detected maternal rheumatic heart disease in Uganda: a prospective follow up study.

BACKGROUND: Pre-existing maternal cardiac disease is a significant contributor to adverse maternal, fetal, and neonatal outcomes. In 2015-2017, our team conducted the first community-based study of maternal rheumatic heart disease (RHD) in sub-Saharan Africa and identified RHD in 88% of those with pre-existing heart disease. Here we conducted a follow up investigation of women previously identified with RHD, describing clinical and echocardiographic outcomes, identifying barriers to medical adherence and evaluating the personal impact of RHD. METHODS: A 2 week prospective follow up was completed at sites in Central and Eastern Uganda. Participants underwent a three-step mixed methods study comprising of 1) direct structured interview targeting clinical history and medication adherence, 2) echocardiogram to evaluate left-sided heart valves, and 3) semi-structured guideline interview to elicit personal impacts of RHD. RESULTS: The team evaluated 40 (80%) of the original 51 mothers with RHD at a median post-partum time of 2.5 years after delivery (IQR 0.5). Echocardiographic data showed improvement in nine women with the remaining 31 women showing stable echocardiographic findings. Adherence to Benzathine penicillin G (BPG) prophylaxis was poor, with 70% of patients either poorly adherent or non-adherent. Three major themes emerged from interviews: 1) social determinants of health (World Health Organization, Social determinants of health, 2019) negatively affecting healthcare, 2) RHD diagnosis negatively affecting female societal wellbeing, 3) central role of spouse in medical decision making. CONCLUSIONS: Screening echocardiography can identify women with pre-existing rheumatic heart disease during pregnancy, but long-term follow-up in Uganda reveals adherence to medical care following diagnosis, including BPG, is poor. Additionally, mothers diagnosed with RHD may experience unintended consequences such as social stigmatization. As identification of occult RHD is critical to prevent adverse pregnancy outcomes, further research is needed to determine how to best support women who face a new diagnosis of RHD, and to determine the role of screening echocardiography in high-risk settings.

Spontaneous Coronary Artery Dissection: JACC State-of-the-Art Review.

Over the past decade, spontaneous coronary artery dissection (SCAD) has emerged as an important cause of myocardial infarction, particularly among younger women. The pace of knowledge acquisition has been rapid, but ongoing challenges include accurately diagnosing SCAD and improving outcomes. Many SCAD patients experience substantial post-SCAD symptoms, recurrent SCAD, and psychosocial distress. Considerable uncertainty remains about optimal management of associated conditions, risk stratification and prevention of complications, recommendations for physical activity, reproductive planning, and the role of genetic evaluations. This review provides a clinical update on the diagnosis and management of patients with SCAD, including pregnancy-associated SCAD and pregnancy after SCAD, and highlight high-priority knowledge gaps that must be addressed.

Psychosocial Adjustment and Quality of Life in Patients With Peripartum Cardiomyopathy.

BACKGROUND: Psychological distress can adversely affect heart failure prognosis, yet the immediate and ongoing challenges faced by women diagnosed with peripartum cardiomyopathy (PPCM) are not well studied. OBJECTIVE: We examined psychological distress and quality of life in a large, national sample of patients with PPCM and evaluated whether these characteristics differ among newly diagnosed (0-1 year), short-term (2-4 years), and long-term (5-10 years) survivors. METHODS: One hundred forty-nine patients with PPCM (mean age, 33.9 ± 5.0 years) recruited from a web-based registry completed questionnaires about generalized anxiety (Generalized Anxiety Disorder-7), cardiac anxiety (Cardiac Anxiety Questionnaire [CAQ]), health status (Medical Outcomes Study Short-Form 12 [SF-12] Health Survey), and PPCM-specific quality-of-life concerns. Group differences were evaluated using multivariate statistics with adjustments for disease severity and psychiatric history. RESULTS: Generalized anxiety symptoms higher than the clinical cutoff were reported by 53% of patients with PPCM. Mean scores on the CAQ (1.9 ± 0.7) and CAQ subscale scores (cardiac-specific fear [2.1 ± 0.8], avoidance [1.7 ± 0.9], and heart-focused attention [1.6 ± 0.8]) were elevated in the overall sample. Psychological symptoms and quality-of-life concerns were generally similar across patients except for cardiac avoidance, which was significantly higher in newly diagnosed women after adjustments for disease severity (P = .05) and psychiatric history (P = .01). Peripartum cardiomyopathy-specific quality-of-life concerns were also prevalent; however, group differences were nonsignificant (P = .07). CONCLUSIONS: Generalized anxiety, cardiac anxiety, and quality-of-life concerns are prevalent among patients with PPCM at all stages of recovery. Psychological issues may be an underrecognized aspect of women's recovery from PPCM.

Heart Transplantation in Women.

Over the past 5 decades, heart transplantation has become an established therapy with greater quality of life and survival than expected from end-stage heart failure. Nonetheless, challenges still exist, especially for women undergoing heart transplantation. Women have greater post-transplant survival than their male counterparts but worse quality of life. Pregnancy may occur, especially because more women are reaching child-bearing age after transplantation. Successful outcomes have been reported but require a systematic multidisciplinary approach. Women are more likely to be sensitized, with preformed anti-human leukocyte antigens antibodies related to prior pregnancies, posing challenges for their pretransplant and post-transplant management.

Experiences of women with cardiac disease in pregnancy: a systematic review and metasynthesis.

OBJECTIVE: Cardiac disease in pregnancy is a leading cause of maternal death in high-income countries. Evidence-based guidelines to assist in planning and managing the healthcare of affected women is lacking. The objective of this research was to produce the first qualitative metasynthesis of the experiences of pregnant women with existing or acquired cardiac disease to inform improved healthcare services. METHOD: We conducted a systematic search of peer-reviewed publications in five databases to investigate the decision-making processes, supportive strategies and healthcare experiences of pregnant women with existing or acquired cardiac disease, or of affected women contemplating pregnancy. Identified publications were screened for duplication and eligibility against selection criteria, following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. We then undertook a thematic analysis of the data relating to women's experiences extracted from each publication to inform new healthcare practices and communication. RESULTS: Eleven studies from six countries were included in our meta-synthesis. Four themes were revealed. Women with congenital and acquired heart disease identified situations where they had either taken charge of decision-making, lacked control or experienced emotional uncertainty when making decisions. Some women were risk aware and determined to take care of themselves in pregnancy while others downplayed the risks. Women with heart disease acknowledged the importance of specific social support measures during pregnancy and after child birth, and reported a spectrum of healthcare experiences. CONCLUSIONS: There is a lack of integrated and tailored healthcare services and information for women with cardiac disease in pregnancy. The experiences of women synthesised in this research has the potential to inform new evidence-based guidelines to support the decision-making needs of women with cardiac disease in pregnancy. Shared decision-making must consider communication across the clinical team. However, coordinated care is challenging due to the different specialists involved and the limited clinical evidence concerning effective approaches to managing such complex care.

Psychological adaptation after peripartum cardiomyopathy: A qualitative study.

BACKGROUND: Peripartum cardiomyopathy (PPCM) is a rare and potentially life-threatening condition of heart failure affecting women with no previous heart disease in the last months of pregnancy and up to six months after childbirth. OBJECTIVE: To explore women's experiences of the process of regaining psychological balance and wellbeing (i.e. psychological adaptation) after having experienced severe peripartum morbidity. DESIGN: A qualitative exploratory research design was applied to guide the study. Data was collected through in-depth, semi-structured, face-toface telephone and e-mail interviews. Thematic analysis was applied in the data analysis. SETTING: The study was a sub-study of a larger nationwide research study investigating the incidence and clinical outcome of peripartum cardiomyopathy in Denmark during a ten-year period of 2005-2014. PARTICIPANTS: Through a criterion-based sampling strategy, 14 Danish women with peripartum cardiomyopathy were recruited for participation in the study. In relation to severity of disease, demographics and pregnancy related characteristic, the sample showed a wide range of diversity. FINDINGS: The overarching theme of the thematic analysis was identified to be Recovering to a new normal after peripartum cardiomyopathy. The overarching theme was comprised by five main themes: Losing trust, Silence after chaos, Disrupted early mothering, Choices made for me and not by me, and Ability to mobilize inner resources. CONCLUSIONS: Findings from this study suggest that women are vulnerable in the time after PPCM diagnosis and struggle to find psychological balance in their life. The need for professional psychological support was often unmet and the physical symptoms were foregrounded in the recovery period. After PPCM, follow-up on psychological wellbeing and morbidity should be offered to women routinely.

Ethnic and racial disparities in hypertension management among women.

Hypertension is a major independent risk factor for cardiovascular disease for all ethnic and racial groups. Compared with other lifestyle and metabolic risk factors, hypertension is the leading cause of death in women. Women with preeclampsia are three times more likely to develop chronic hypertension and have an elevated risk of future cardiovascular disease. The objective of this article is to provide a review of the factors related to racial and ethnic disparities in blood pressure control. This is followed by a summary of contemporary clinical practice guidelines for the prevention, through lifestyle behavioral modification, and treatment of hypertension with pharmacotherapy.

Wish to conceive and concerns to develop cardiovascular complications during pregnancy in patients with Turner syndrome.

INTRODUCTION: Turner syndrome (TS) is associated with subfertility and infertility. Nevertheless, an increasing number of women become pregnant through oocyte donation. The wish to conceive may be negatively influenced by the fear of cardiovascular complications. The aim was to investigate the wish to conceive and the concerns about cardiovascular complications during pregnancy in women with TS. METHODS: The patient association for TS invited all members of ≥18 years old (n = 344) to complete a specifically developed, disease-specific questionnaire, including questions about fertility, wish to conceive, attempts and concerns. Results were compared with previously published results of this questionnaire in women with congenital heart disease. RESULTS: The questionnaire was completed by 89 women (median age 30.1 years, Q1-Q3 = 22.9-39.4). Of them, 51% had 45, X0-monosomy and 38% had ≥1 cardiac abnormality. Seventeen women (19%) had attempted to become pregnant and 12 of them succeeded to become pregnant. Women who had not undertaken attempts to conceive (81%), considered themselves mainly too young or had no partner. Of the total sample, 58% were concerned about the influence of pregnancy on their cardiovascular status. This was higher (75%) in the sample of women with TS and cardiac abnormalities, than in women with congenital heart disease from a previously published cohort (21%), (p < .001). There were no differences in concerns about pregnancy complications between women with TS who respectively had or had not attempted to become pregnant. DISCUSSION: Women with TS, especially those with cardiac abnormalities, show serious concerns about the risks pregnancy may have. Patients should be timely counseled and specifically asked about their concerns. Psychosocial care should be provided when necessary.

Ceftriaxone pretreatment reduces the propensity of postpartum depression following stroke during pregnancy in rats.

OBJECTIVE: Ischemic stroke increases the propensity to develop depression in humans and laboratory animals, and we hypothesized that such an incidence during pregnancy may increase the risk for the development of postpartum depression (PPD). MATERIALS AND METHODS: To test this hypothesis, we used bilateral common carotid arteries occlusion (BCCAO) to induce transient cerebral ischemia in pregnant rats, and evaluated its effects on subsequent development of PPD in dams. Additionally, we investigated whether ceftriaxone pretreatments before the induction of brain ischemia could alter the propensity of PPD. RESULTS: We found that 15min BCCAO during pregnancy enhanced immobility time and reduced the frequency of swimming or climbing behaviors in the forced swim test, and decreased the sucrose preference in dams at postpartum day 21. Such behavioral alterations were associated with lower level of GLT-1 expression in the medial prefrontal cortical regions (mPFC) of PPD dams. Specifically, mPFC GLT-1 expression levels in dams with ischemia history were correlated with sucrose preference levels at postpartum day 21. Finally, ceftriaxone pretreatment (200mg/kg/day, 5days) before the 15min BCCAO prevented the development of PPD, and prevented the reduction of GLT-1 expression in the mPFC. CONCLUSIONS: Taken together, our results suggested that ceftriaxone pretreatment before brain ischemia during pregnancy may reduce the propensity for the development of PPD by preventing the loss of GLT-1 expression in the mPFC.

Women's Experiences Being Diagnosed With Peripartum Cardiomyopathy: A Qualitative Study.

INTRODUCTION: Cardiovascular disease has been identified as the leading cause of maternal mortality in the United States, with cardiomyopathy, including peripartum cardiomyopathy (PPCM), accounting for 12% to 16% of all pregnancy-related deaths. The purpose of this study was to describe women's experiences being diagnosed with PPCM. METHODS: This investigation was conducted using a qualitative design. We collected publicly available narratives posted by 92 women with PPCM (mean [SD] age 29 [6] years, mean [SD] ejection fraction 25.5 [10.8]%) in 3 online support groups. Data were coded and thematically organized so as to produce a richly detailed account of this experience. RESULTS: The experience of diagnosis was marked by the women's distinct memories of their initial symptoms and whether they were dismissed or taken seriously. The most commonly reported symptoms were extreme shortness of breath, orthopnea, tachycardia, palpitations, chest pain, cough, and edema. Nearly 40% of women experienced symptom dismissal by health care providers. One-fourth of women were initially given inaccurate diagnoses ranging from "new mom anxiety" to asthma. Women described their initial reaction to diagnosis as feeling terrified, devastated, and feeling a sense of doom. Women had difficulty caring for their newborns during the postpartum period, and they struggled with the medical advice they received to not get pregnant again. DISCUSSION: Despite experiencing severe subjective and objective symptoms, nearly 40% of women with PPCM experienced symptom dismissal by health care providers, in part due to the overlap between normal symptoms of pregnancy or the postpartum period and symptoms of heart failure.

Quality of Life in Survivors of Peripartum Cardiomyopathy.

Little data exist with regard to the effect of peripartum cardiomyopathy (PPCM) on quality of life. The aim of this study was to determine the impact of PPCM on quality of life and emotional well-being. We sought to determine the feasibility of using social media to perform quality of life research. We conducted a study using a survey distributed to established members of "Peripartum Cardiomyopathy Survivors" support group on the social networking site Facebook. A total of 116 women completed the survey (age 36 ± 6.4 years; 91% white, 75% married, 46% college educated), with 4.9 ± 0.5 years (range 0.02 to 24 years) since the initial diagnosis. Most women (41%) never returned to their baseline level of activity, and 28% discontinued their job because of the diagnosis. Most respondents (56%) were not limited or only slightly limited by heart failure symptoms over the past 2 months. Most respondents (56%) never returned to their baseline emotionally after the diagnosis of PPCM, and most patients (73%) were dissatisfied with their current level of heart failure symptoms. Most patients (67%) felt discouraged frequently (more than several times per month) because of heart failure. Only 26% of women were satisfied with the counseling they received from their providers. The emotional and physical burden of PPCM on young mothers with PPCM years after the diagnosis is striking. Identifying strategies that promote better emotional health and potential treatment strategies may be required.

A cohort study of women with a Fontan circulation undergoing preconception counselling.

OBJECTIVE: To describe outcomes for women with a Fontan circulation attending preconception counselling (PCC). Exploring (1) impact of counselling on decision to become pregnant; (2) pregnancy rates in those opting for pregnancy and (3) short-term and long-term outcome of those who succeeded in becoming pregnant. METHODS: Retrospective review of women aged 16-45 years with a Fontan circulation from 1994 to 2014. RESULTS: 58 women were offered PCC, 3 declined and 55 received PCC. Following PCC, 15 opted against conception, 16 decided to delay pregnancy, 19 attempted pregnancy and 5 were lost to follow-up. Of the 19 women, 14 succeeded, becoming pregnant a total of 43 times (median 1, range 1-9). Of these, 6 miscarried all pregnancies. 8 carried 14 pregnancies to viability. Baseline hypoxaemia and cardiac disease in pregnancy (CARPREG) score was similar in those opting for and against pregnancy, but CARPREG score was better in those delaying conception. Women exclusively miscarrying or unable to conceive were more likely to have baseline hypoxaemia and greater CARPREG score. Cardiac complications included arrhythmia requiring treatment (n = 4) and one thromboembolism. Obstetric complications were greater in women with a Fontan circulation, 10 preterm births (< 37 weeks) and 8 small for gestational age babies (< 10th centile). There was one neonatal death. At follow-up, there was no deterioration in clinical status as determined by echo. CONCLUSIONS: Most women accept PCC and decided to pursue pregnancy; in some cases, this was despite being advised of a poor prognosis. Pregnancy outcome was related to baseline hypoxia and CARPREG scores.

Symptoms in women with Peripartum Cardiomyopathy: A mixed method study.

OBJECTIVE: Peripartum Cardiomyopathy is a form of cardiac disease often associated with cardiac failure, occurring in late pregnancy or after childbirth. The anatomical and physiological changes in the mother associated with normal pregnancy are profound, and this may result in symptoms and signs that overlap with Peripartum Cardiomyopathy, leading to missed or delayed diagnosis. Women's experiences of Peripartum Cardiomyopathy symptoms remain poorly studied. The aim of this study was to explore and describe women's experiences of symptoms in Peripartum Cardiomyopathy. DESIGN: A triangulation of methods with individual interviews and data from medical records. SETTING: Mothers with Peripartum Cardiomyopathy diagnosis were recruited from Western Sweden as a part of research project. PARTICIPANTS: 19 women were interviewed and medical records were reviewed by authors. DATA ANALYSIS: All interview transcripts were analysed using qualitative inductive content analysis to identify key themes. RESULTS: The main theme, meaning of onset and occurrence of symptoms is captured in the metaphor: being caught in a spider web, comprising subthemes, invasion of the body by experienced symptoms and feeling of helplessness. Symptoms related to Peripartum Cardiomyopathy started for 17 women during pregnancy and in two post partum and time from symptoms to diagnosis varied between three and 190 days (median 40). The physical symptoms were:shortness of breath, excessive fatigue and swelling, bloatedness, nausea, palpitation, coughing, chest tightness, bodily pain, headache, fever, tremor, dizziness, syncope, restless and tingly body and reduced urine output. Emotional symptoms were: fear, anxiety, feelings of panic, and thoughts of impending death. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: Symptoms of Peripartum Cardiomyopathy were debilitating, exhausting and frightening for the women interviewed in this study. Health care professionals responsible for the antenatal care, especially midwives, need skills to identify initial symptoms of Peripartum Cardiomyopathy for early referral and treatment by a specialist. In order to give optimal care more research is needed to show how to improve midwives' knowledge of Peripartum Cardiomyopathy.

A systematic review and meta-analysis of the epidemiology and burden of venous thromboembolism among pregnant women.

BACKGROUND: Pregnancy-related venous thromboembolism (VTE) is one of the leading causes of maternal morbidity and mortality. OBJECTIVES: To review the epidemiology, and humanistic and economic burden of pregnancy-related VTE. SEARCH STRATEGY: Medline, the Cochrane Central Register of Controlled Trials, Econlit, Science Direct, JSTOR, Oxford Journals, and Cambridge Journals were searched for reports published between January 2000 and December 2012. Keywords related to VTE, pregnancy, and epidemiology and the humanistic and economic burdens were combined. SELECTION CRITERIA: Eligible studies evaluated the incidence, mortality, recurrence, complications, quality-of-life, and economic burden of VTE among pregnant women, and had been published in English. DATA COLLECTION AND ANALYSIS: Background information of the study, participants' characteristics, and study outcomes were collected. Meta-analyses of data were performed. MAIN RESULTS: Twenty studies were included, none of which investigated the economic burden. The pooled overall incidence of pregnancy-related VTE was 1.2 per 1000 deliveries. The pooled VTE case fatality rate was 0.68% and the recurrence rate was 4.27%. The pooled risk of major bleeding was 1.05%. Post-thrombotic syndrome seemed to have a negative effect on quality of life. CONCLUSIONS: Although the incidence of VTE was found to be relatively low during pregnancy and the postpartum period, the clinical burden is high. Further research is required to assess the economic burden of pregnancy-relate VTE.

Contraceptive Use and Unintended Pregnancy in Women With Congenital Heart Disease.

OBJECTIVE: To identify patterns of contraceptive use and pregnancy in an academic adult congenital cardiology practice. METHODS: In this cross-sectional study, from October 2013 through March 2014, 100 women with congenital heart disease aged 18-45 years were recruited from an academic congenital heart disease clinic and administered a survey regarding pregnancy history, contraception use, and understanding of pregnancy-related and contraceptive-related risk. The primary outcome was current use of long-acting reversible contraception, including intrauterine devices or subdermal implants. RESULTS: Of 83 sexually active women, 63 (75.9%, 95% confidence interval [CI] 65.3-85.1) reported currently using any contraceptive method, including 30 of 83 (36.1%, 95% CI 25.9-47.4) using tier I methods (typical-use failure rates of less than 1% per year) and 20 of 83 (24.1%, 95% CI 15.4-34.7) using tier II methods (typical-use failure rates of 6-12% per year). Nine of 83 (10.8%, 95% CI 5.1-19.6) reported currently using long-acting reversible contraception. Sixty-four of 141 total pregnancies (45.4%, 95% CI 31.9-58.9) were self-reported by participants as "unexpected" rather than "planned." Only one (1.6%, 95% CI 0-4.6) of the 64 unintended pregnancies occurred when the woman was using a tier I method of contraception at the time of conception. CONCLUSION: Most women with congenital heart disease of childbearing age are sexually active. The high incidence of unintended pregnancy in this group may be related to underuse of highly effective methods of contraception. Specific counseling on tier I methods may reduce unintended pregnancies in women with congenital heart disease. LEVEL OF EVIDENCE: III.

Women's values and preferences for thromboprophylaxis during pregnancy: a comparison of direct-choice and decision analysis using patient specific utilities.

BACKGROUND: Women with a history of venous thromboembolism (VTE) have an increased recurrence risk during pregnancy. Low molecular weight heparin (LMWH) reduces this risk, but is costly, burdensome, and may increase risk of bleeding. The decision to start thromboprophylaxis during pregnancy is sensitive to women's values and preferences. Our objective was to compare women's choices using a holistic approach in which they were presented all of the relevant information (direct-choice) versus a personalized decision analysis in which a mathematical model incorporated their preferences and VTE risk to make a treatment recommendation. METHODS: Multicenter, international study. Structured interviews were on women with a history of VTE who were pregnant, planning, or considering pregnancy. Women indicated their willingness to receive thromboprophylaxis based on scenarios using personalized estimates of VTE recurrence and bleeding risks. We also obtained women's values for health outcomes using a visual analog scale. We performed individualized decision analyses for each participant and compared model recommendations to decisions made when presented with the direct-choice exercise. RESULTS: Of the 123 women in the study, the decision model recommended LMWH for 51 women and recommended against LMWH for 72 women. 12% (6/51) of women for whom the decision model recommended thromboprophylaxis chose not to take LMWH; 72% (52/72) of women for whom the decision model recommended against thromboprophylaxis chose LMWH. CONCLUSIONS: We observed a high degree of discordance between decisions in the direct-choice exercise and decision model recommendations. Although which approach best captures individuals' true values remains uncertain, personalized decision support tools presenting results based on personalized risks and values may improve decision making.