The Aortic Dissection Collaborative: Methods for building capacity for patient-centered outcomes research in the aortic dissection community

Lee, Jenney R; Lawrence, Sarah O.; Soto, Michael; Case, Melanie; Cotter, Novelett; Howitt, Jake; Soderlund, Timo; Trotter, Debra; Byers, Peter H.; Shalhub, Sherene

doi:10.1053/j.semvascsurg.2022.02.004

Cited by 10 publications

(4 citation statements)

References 25 publications

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“…International societies such as the American Heart Association (AHA) and the European Society of Cardiology (ESC) recommend monitoring, but it has not been given the relevance it deserves. Henceforth, national and territorial health organizations should review and adopt new screening and follow-up protocols [16], where patients diagnosed with AD are integrated to provide them with counselling and recommendations about their condition, which could be implemented in our country.…”

Section: Discussionmentioning

confidence: 99%

Aortic Dissection with Atypical Manifestations During Puerperium: A Case Report

2024

FEM

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Aortic dissection (AD) is a life-threatening condition that can be challenging to detect due to its subtle symptoms. In pregnant women and those in the postpartum period, AD ranks as the third highest cause of maternal mortality from heart-related issues globally. Aims: To present a case of aortic dissection in a postpartum patient without conventional risk factors. Methodology: A 35-year-old woman who had given birth via caesarean section just 7 days prior arrived at Hospital San Felix in La Dorada, Caldas, Colombia with sudden loss of consciousness and seizures. These symptoms led to unstable blood pressure and heart function, and during surgery, doctors discovered a tear in her aorta which ultimately proved fatal. Results: The initial management was appropriate based on clinical manifestations, but a potentially fatal condition like aortic dissection was underdiagnosed due to atypical presentations. Scientific Novelty: The presentation of aortic dissection can vary greatly, particularly in pregnant women due to physiological changes. Conclusion: Aortic dissection is common in pregnant women and can manifest atypically, underscoring the need for increased awareness of different symptoms and signs, as well as enhanced monitoring in this population.

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Section: Discussionmentioning

confidence: 99%

Aortic Dissection with Atypical Manifestations During Puerperium: A Case Report

2024

FEM

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“…We, therefore, offered an in-person PCORP session that convened a panel on the importance of patient engagement in PCOR projects and encouraged scholars to incorporate patient input into their individual projects. The latter is exemplified by the work of one of our scholars on a national registry [ 14 ].…”

Section: Methodsmentioning

confidence: 99%

Evaluation of an experiential training program in patient-centered outcomes and comparative effectiveness research for diverse researcher communities and health care organizations

Buchwald¹,

Rogers²,

Rose³

et al. 2023

J. Clin. Trans. Sci.

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Background/Objective: The goal of the Patient-Centered Outcomes Research Partnership was to prepare health care professionals and researchers to conduct patient-centered outcomes and comparative effectiveness research (CER). Substantial evidence gaps, heterogeneous health care systems, and decision-making challenges in the USA underscore the need for evidence-based strategies. Methods: We engaged five community-based health care organizations that serve diverse and underrepresented patient populations from Hawai’i to Minnesota. Each partner nominated two in-house scholars to participate in the 2-year program. The program focused on seven competencies pertinent to patient-centered outcomes and CER. It combined in-person and experiential learning with asynchronous, online education, and created adaptive, pragmatic learning opportunities and a Summer Institute. Metrics included the Clinical Research Appraisal Inventory (CRAI), a tool designed to assess research self-efficacy and clinical research skills across 10 domains. Results: We trained 31 scholars in 3 cohorts. Mean scores in nine domains of the CRAI improved; greater improvement was observed from the beginning to the midpoint than from the midpoint to conclusion of the program. Across all three cohorts, mean scores on 52 items (100%) increased (p ≤ 0.01), and 91% of scholars reported the program improved their skills moderately/significantly. Satisfaction with the program was high (91%). Conclusions: Investigators that conduct patient-centered outcomes and CER must know how to collaborate with regional health care systems to identify priorities; pose questions; design, conduct, and disseminate observational and experimental research; and transform knowledge into practical clinical applications. Training programs such as ours can facilitate such collaborations.

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“…The need for further studies on the topic of aortic dilatation rates during pregnancy has been recognized by the Aortic Dissection Collaborative, a network of researchers and stakeholders studying aortic dissection, who have recently identified aortic dissection in pregnancy as a highpriority research topic of interest. 23 One multicenter study of Pregnancy and other Reproductive Outcomes in Women with Genetic-Predisposition for Aortic Dissection (PROWGAD) is currently ongoing to study cardiac outcomes in females with connective tissue disease such as MFS. Our study suggests that beta-blockers may play a protective role in aortic dilatation in pregnancy, raising the possibility that their use may mitigate adverse long-term cardiac complications in patients with MFS who experience a pregnancy.…”

Section: Manuscriptmentioning

confidence: 99%

Beta-Blocker Use during Pregnancy Correlates with Less Aortic Root Dilatation in Patients with Marfan's Syndrome

et al. 2023

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Background Pregnant patients with Marfan syndrome (MFS) are at an increased risk for adverse aortic outcomes. While beta-blockers are used to slow aortic root dilatation in non-pregnant MFS patients, the benefit of such therapy in pregnant MFS patients remains controversial. The purpose of this study was to investigate the effect of beta-blockers on aortic root dilatation during pregnancy in MFS patients. Methods This was a longitudinal single-center retrospective cohort study of females with MFS who completed a pregnancy between 2004 and 2020. Clinical, fetal, and echocardiographic data were compared in patients on vs off beta-blockers during pregnancy. Results A total of 20 pregnancies completed by 19 patients were evaluated. Beta-blocker therapy was initiated or continued in 13 (65%) of the 20 pregnancies. Pregnancies on beta-blocker therapy experienced less aortic growth compared to those off beta-blockers (0.10cm [IQR: 0.10-0.20cm] vs 0.30cm [IQR: 0.25-0.35cm]; P=0.03). Using univariate linear regression, maximum systolic blood pressures (SBP), increase in SBP, and absence of beta-blocker use in pregnancy were found to be significantly associated with greater increase in aortic diameter during pregnancy. There were no differences in rates of fetal growth restriction between pregnancies on vs off beta-blockers. Conclusions This is the first study to evaluate changes in aortic dimensions in MFS pregnancies stratified by beta-blocker use. Beta-blocker therapy was found to be associated with less aortic root growth during pregnancy in MFS patients.

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The Aortic Dissection Collaborative: Methods for building capacity for patient-centered outcomes research in the aortic dissection community

Cited by 10 publications

References 25 publications

Aortic Dissection with Atypical Manifestations During Puerperium: A Case Report

Aortic Dissection with Atypical Manifestations During Puerperium: A Case Report

Evaluation of an experiential training program in patient-centered outcomes and comparative effectiveness research for diverse researcher communities and health care organizations

Beta-Blocker Use during Pregnancy Correlates with Less Aortic Root Dilatation in Patients with Marfan's Syndrome

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