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1. An assessment of the current medical management of thoracic aortic disease: A patient-centered scoping literature review

Author

Robert C.F. Pena, Marion A. Hofmann Bowman, Myra Ahmad, Julie Pham, Eva Kline-Rogers, Melanie J. Case, Jenney Lee, Kim Eagle, Novelett E. Cotter, Carmen C. David, Mark Fasano, Richard Goldenberg, Jake Howitt, Timo T. Söderlund, Debra Trotter, Asaf Rabin, Mattie Boehler-Tatman, Melissa L. Russo, Laura Marie Drudi, Laura L. Marks, Maisoon D. Yousif, Tabea Hoffstaetter, Ella Taubenfeld, Sreekanth Vemulapalli, Chrisanne S. Campos, Lindsey Rusche, Firas F. Mussa, Gretchen MacCarrick, Earl Goldsborough, Christeen Samuel, Lillian Xu, Nicolas J. Mouawad, Eanas S. Yassa, Xiaoyi Teng, Amani Politano, Jesse Teindl, Lara Bloom, Rebecca Gluck, Meredith Ford O'Neal, Josephine Grima, Eileen Masciale, Takeyoshi Ota, Katelyn Wright, Alan J. Hakim, Gareth Owens, George J. Arnaoutakis, Dejah Judelson, Mario D'Oria, Lurdes del Rio-Sola, Mark Ajalat, Marvin Chau, Stephanie D. Talutis, Karen Woo, Max V. Wohlauer, Jeniann A. Yi, Kim A. Eagle, Hyein Kim, Claudine Henoud, Scott Damrauer, Emilia Krol, Rana O. Afifi, Alana C. Cecchi, Madeline Drake, Anthony Estrera, Avery M Hebert, Dianna M. Milewicz, Siddharth K. Prakash, Aaron W. Roberts, Harleen Sandhu, Akili Smith-Washington, Akiko Tanaka, Jacob Watson, Catherine M. Albright, Christopher R. Burke, Peter H. Byers, L'Oreal Kennedy, Sarah O. Lawrence, Jenney R. Lee, Jonathan Medina, Thamanna Nishath, Courtney Segal, Sherene Shalhub, Michael Soto, Linell Catalan, Megan Patterson, and Nicole Ilonzo

Subjects
Aortic Aneurysm, Thoracic, Humans, Surgery, Cardiology and Cardiovascular Medicine, Aortic Aneurysm, Abdominal
Abstract

Thoracic aortic aneurysm and dissection are complex diagnoses that require management by multidisciplinary providers using a variety of medical therapies, surgical interventions, and lifestyle modifications. Pharmacological agents, such as β-blockers (atenolol) and angiotensin II type 1 receptor blockers (losartan), have been mainstay treatments for several years, and research from the past decade has continued to evaluate these and other medication classes to further improve patient morbidity and mortality. Combination β- and renin-aldosterone-angiotensin blockade, statins, metformin, antioxidants, and vitamins have been evaluated as therapeutics in both thoracic and abdominal aortic aneurysms, as well as the effects of various antibiotics (ie, fluoroquinolones and tetracyclines) and benefits of lifestyle modifications (eg, diet and exercise) and enhanced patient-centered care and treatment adherence. In addition, as our understanding of the genetic, biochemical, and pathophysiological mechanisms behind these diseases expands, so do potential targets for future therapeutic research (eg, interleukins, matrix metalloproteases, and mast cells). This review incorporates the major meta-analyses, systematic and generalized reviews, and clinical trials published from 2010 through 2021 that focus on these topics in thoracic aortic aneurysms (and abdominal aneurysms when thoracic literature is scarce). Several key ongoing clinical trials, case studies, and in vivo/in vitro studies are also mentioned. Furthermore, we discuss current gaps in the literature and the abundance of clinical evidence for some interventions in abdominal aneurysms with few thoracic correlates, thus indicating a need for investigation of these subjects in the latter.

Published
2022
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2. Aortic dissection in pregnancy and the postpartum period

Author

Melissa Russo, Mattie Boehler-Tatman, Catherine Albright, Carmen David, L'Oreal Kennedy, Aaron W. Roberts, Sherene Shalhub, Rana Afifi, Melanie Case, Novelett E. Cotter, Carmen C. David, Mark Fasano, Richard Goldenberg, Jake Howitt, Timo T. Söderlund, Debra Trotter, Asaf Rabin, Melissa L. Russo, Laura Marie Drudi, Laura L. Marks, Maisoon D. Yousif, Tabea Hoffstaetter, Ella Taubenfeld, Sreekanth Vemulapalli, Chrisanne S. Campos, Lindsey Rusche, Robert C.F. Pena, Firas F. Mussa, Gretchen MacCarrick, Earl Goldsborough, Christeen Samuel, Lillian Xu, Nicolas J. Mouawad, Eanas S. Yassa, Xiaoyi Teng, Amani Politano, Jesse Teindl, Lara Bloom, Rebecca Gluck, Meredith Ford O'Neal, Josephine Grima, Eileen Masciale, Takeyoshi Ota, Katelyn Wright, Alan J. Hakim, Gareth Owens, George J. Arnaoutakis, Dejah Judelson, Mario D'Oria, Lurdes del Rio-Sola, Mark Ajalat, Marvin Chau, Stephanie D. Talutis, Karen Woo, Max V. Wohlauer, JeniannA. Yi, Kim A. Eagle, Marion A. Hofmann Bowman, Eva Kline-Rogers MS, Hyein Kim, Claudine Henoud, Scott Damrauer, Emilia Krol, Rana O. Afifi, Alana C. Cecchi, Madeline Drake, Anthony Estrera, Avery M Hebert, Dianna M. Milewicz, Siddharth K. Prakash, Harleen Sandhu, Akili Smith-Washington, Akiko Tanaka, Jacob Watson, Myra Ahmad, Catherine M. Albright, Christopher R. Burke, Peter H. Byers, Sarah O. Lawrence, Jenney R. Lee, Jonathan Medina, Thamanna Nishath, Julie Pham, Courtney Segal, Michael Soto, Linell Catalan, Megan Patterson, and Nicole Ilonzo

Subjects
Aortic Dissection, Pregnancy, Risk Factors, Postpartum Period, Humans, Multicenter Studies as Topic, Female, Surgery, Cardiology and Cardiovascular Medicine
Abstract

Pregnancy-associated aortic dissection (AD) is a rare event, with an incidence of 0.0004% per pregnancy. The work of the Aortic Dissection Collaborative identified pregnancy-associated AD as a high-priority topic, despite its rarity. The Pregnancy Working Group, which included physicians and patient stakeholders, performed a systematic literature review of pregnancy-associated AD from 1960 to 2021 and identified 6,333 articles through PubMed, OVID MEDLINE, Cochrane, Embase, CINAHL and Web of Science. The inclusion criterion was AD in pregnant populations and exclusion criteria were case reports, conference abstracts, and languages other than English. Assessment of full-text articles for eligibility after removal of duplicates from all databases yielded 68 articles to be included in the final review. Topics included were timing of AD in pregnancy, type of AD, and management considerations of pregnancy-associated AD. The Pregnancy Working Group identified gaps in knowledge and future areas of research for pregnancy-associated AD, including clinical management, mental health outcomes post AD, reproductive and genetic counseling, and contraception after AD. Future collaborative projects could be a multicenter, international registry for all pregnancy-associated AD to refine the risk factors, best practice and management of AD in pregnancy. In addition, future mixed methodology studies may be useful to explore social, mental, and emotional factors related to pregnancy-associated AD and to determine support groups' effect on anxiety and depression related to these events in the pregnancy and postpartum period.

Published
2022
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3. Implementation of telemedicine in the care of patients with aortic dissection

Author

Thamanna Nishath, Katie Wright, Christopher R. Burke, Xiaoyi Teng, Novelett Cotter, Jeniann A. Yi, Laura M. Drudi, Melanie Case, Novelett E. Cotter, Carmen C. David, Mark Fasano, Richard Goldenberg, Jake Howitt, Timo T. Söderlund, Debra Trotter, Asaf Rabin, Mattie Boehler-Tatman, Melissa L. Russo, Laura Marie Drudi, Laura L. Marks, Maisoon D. Yousif, Tabea Hoffstaetter, Ella Taubenfeld, Sreekanth Vemulapalli, Chrisanne S. Campos, Lindsey Rusche, Robert C.F. Pena, Firas F. Mussa, Gretchen MacCarrick, Earl Goldsborough, Christeen Samuel, Lillian Xu, Nicolas J. Mouawad, Eanas S. Yassa, Amani Politano, Jesse Teindl, Lara Bloom, Rebecca Gluck, Meredith Ford O'Neal, Josephine Grima, Eileen Masciale, Takeyoshi Ota, Katelyn Wright, Alan J. Hakim, Gareth Owens, George J. Arnaoutakis, Dejah Judelson, Mario D'Oria, Lurdes del Rio-Sola, Mark Ajalat, Marvin Chau, Stephanie D. Talutis, Karen Woo, Max V. Wohlauer, JeniannA. Yi, Kim A. Eagle, Marion A. Hofmann Bowman, Eva Kline-Rogers MS, Hyein Kim, Claudine Henoud, Scott Damrauer, Emilia Krol, Rana O. Afifi, Alana C. Cecchi, Madeline Drake, Anthony Estrera, Avery M Hebert, Dianna M. Milewicz, Siddharth K. Prakash, Aaron W. Roberts, Harleen Sandhu, Akili Smith-Washington, Akiko Tanaka, Jacob Watson, Myra Ahmad, Catherine M. Albright, Peter H. Byers, L'Oreal Kennedy, Sarah O. Lawrence, Jenney R. Lee, Jonathan Medina, Julie Pham, Courtney Segal, Sherene Shalhub, Michael Soto, Linell Catalan, Megan Patterson, and Nicole Ilonzo

Subjects
Aortic Dissection, COVID-19, Humans, Surgery, Cardiology and Cardiovascular Medicine, Pandemics, Telemedicine, Specialties, Surgical
Abstract

Telemedicine uses telephone-based or any form of digital communication for remote clinical services. It has been a field of interest for the last century, with broader implementation of telemedicine technologies during the last 25 years. The COVID-19 pandemic was an impetus for the adoption of these technologies globally across all health care services, including patient care, surgical practice, and workflow. As part of the patient engagement work in the Aortic Dissection Collaborative, this topic was identified as an important patient-centered research topic. Telemedicine has been adopted increasingly in vascular surgery; however, there is little evidence on appropriate use of these technologies pertaining to treating patients with aortic dissection or aortopathy in general. This landscape review summarizes the uses of telemedicine applications pre and post pandemic in medicine and vascular surgery, with a particular focus on uses in aortopathy. Using common resource databases, we identified articles related to the history of telemedicine, its current utilization, and application to vascular surgery and/or aortopathy. We briefly review the history of telemedicine and illustrate a range of applications in medicine before the pandemic, along with its rapid uptake globally during the COVID-19 pandemic. The enablers and barriers to using telemedicine are explored, although as a whole there is satisfaction with its integration among patients and providers. To address these, we offer recommendations to address future research as it pertains to telemedicine technologies in aortic dissection.

Published
2022
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4. The mental health impact of aortic dissection

Author

Nicole Ilonzo, Ella Taubenfeld, Maisoon D. Yousif, Claudine Henoud, Jake Howitt, Max Wohlauer, Mario D'Oria, Gretchen MacCarrick, Melanie Case, Novelett E. Cotter, Carmen C. David, Mark Fasano, Richard Goldenberg, Timo T. Söderlund, Debra Trotter, Asaf Rabin, Mattie Boehler-Tatman, Melissa L. Russo, Laura Marie Drudi, Laura L. Marks, Tabea Hoffstaetter, Sreekanth Vemulapalli, Chrisanne S. Campos, Lindsey Rusche, Robert C.F. Pena, Firas F. Mussa, Earl Goldsborough, Christeen Samuel, Lillian Xu, Nicolas J. Mouawad, Eanas S. Yassa, Xiaoyi Teng, Amani Politano, Jesse Teindl, Lara Bloom, Rebecca Gluck, Meredith Ford O'Neal, Josephine Grima, Eileen Masciale, Takeyoshi Ota, Katelyn Wright, Alan J. Hakim, Gareth Owens, George J. Arnaoutakis, Dejah Judelson, Lurdes del Rio-Sola, Mark Ajalat, Marvin Chau, Stephanie D. Talutis, Karen Woo, Max V. Wohlauer, JeniannA. Yi, Kim A. Eagle, Marion A. Hofmann Bowman, Eva Kline-Rogers MS, Hyein Kim, Scott Damrauer, Emilia Krol, Rana O. Afifi, Alana C. Cecchi, Madeline Drake, Anthony Estrera, Avery M Hebert, Dianna M. Milewicz, Siddharth K. Prakash, Aaron W. Roberts, Harleen Sandhu, Akili Smith-Washington, Akiko Tanaka, Jacob Watson, Myra Ahmad, Catherine M. Albright, Christopher R. Burke, Peter H. Byers, L'Oreal Kennedy, Sarah O. Lawrence, Jenney R. Lee, Jonathan Medina, Thamanna Nishath, Julie Pham, Courtney Segal, Sherene Shalhub, Michael Soto, Linell Catalan, and Megan Patterson

Subjects
Aortic Dissection, Mental Health, Surveys and Questionnaires, Quality of Life, Humans, Surgery, Cardiology and Cardiovascular Medicine
Abstract

Although the topics of surgical techniques and medical therapies have been widely studied in aortic dissection (AD), studies examining the short- and long-term impact of this event on mental health are largely lacking. Many of the studies have used the 36-Item Short Form Survey at variable time points after the event. However, AD as medical trauma has a complex impact on a person's identity. Its implications for emotional, mental, social, existential, and self-concept could be explored more robustly. This topic was identified as a topic of interest by the AD Collaborative. The AD Collaborative Mental Health Working Group was formed and performed a landscape review to summarize current literature surrounding quality of life research in those who have experienced AD, identify gaps in knowledge, and to outline future research questions.

Published
2022
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5. Current state and future directions of genomic medicine in aortic dissection: A path to prevention and personalized care

Author

Alana C. Cecchi, Madeline Drake, Chrisanne Campos, Jake Howitt, Jonathan Medina, Scott M. Damrauer, Sherene Shalhub, Dianna M. Milewicz, Melanie Case, Novelett E. Cotter, Carmen C. David, Mark Fasano, Richard Goldenberg, Timo T. Söderlund, Debra Trotter, Asaf Rabin, Mattie Boehler-Tatman, Melissa L. Russo, Laura Marie Drudi, Laura L. Marks, Maisoon D. Yousif, Tabea Hoffstaetter, Ella Taubenfeld, Sreekanth Vemulapalli, Chrisanne S. Campos, Lindsey Rusche, Robert C.F. Pena, Firas F. Mussa, Gretchen MacCarrick, Earl Goldsborough, Christeen Samuel, Lillian Xu, Nicolas J. Mouawad, Eanas S. Yassa, Xiaoyi Teng, Amani Politano, Jesse Teindl, Lara Bloom, Rebecca Gluck, Meredith Ford O'Neal, Josephine Grima, Eileen Masciale, Takeyoshi Ota, Katelyn Wright, Alan J. Hakim, Gareth Owens, George J. Arnaoutakis, Dejah Judelson, Mario D'Oria, Lurdes del Rio-Sola, Mark Ajalat, Marvin Chau, Stephanie D. Talutis, Karen Woo, Max V. Wohlauer, JeniannA. Yi, Kim A. Eagle, Marion A. Hofmann Bowman, Eva Kline-Rogers MS, Hyein Kim, Claudine Henoud, Scott Damrauer, Emilia Krol, Rana O. Afifi, Anthony Estrera, Avery M Hebert, Siddharth K. Prakash, Aaron W. Roberts, Harleen Sandhu, Akili Smith-Washington, Akiko Tanaka, Jacob Watson, Myra Ahmad, Catherine M. Albright, Christopher R. Burke, Peter H. Byers, L'Oreal Kennedy, Sarah O. Lawrence, Jenney R. Lee, Thamanna Nishath, Julie Pham, Courtney Segal, Michael Soto, Linell Catalan, Megan Patterson, and Nicole Ilonzo

Subjects
Aortic Dissection, Genomic Medicine, Risk Factors, Quality of Life, Humans, Surgery, Cardiology and Cardiovascular Medicine, Risk Assessment
Abstract

Aortic dissection confers high mortality and morbidity rates despite advances in treatment, impacts quality of life, and contributes immense burden to the healthcare system globally. Efforts to prevent aortic dissection through screening and management of modifiable risk factors and early detection of aneurysms should incorporate genomic information, as it is integral to stratifying risk. However, effective integration of genomic-guided risk assessment into clinical practice will require addressing implementation barriers that currently permeate our healthcare systems. The Aortic Dissection Collaborative was established to define aortic dissection research priorities through patient engagement. Using a collaborative patient-centered feedback model, our Genomic Medicine Working Group identified related research priorities that could be investigated by pragmatic interventional studies aimed at aortic dissection prevention, utilization of genomic information to improve patient outcomes, and access to genomic medicine services. Further research is also needed to identify the genomic, lifestyle, and environmental risk factors that contribute to aortic dissection so these data can be incorporated into future comparative effectiveness studies to prevent aortic dissection.

Published
2022
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6. The Aortic Dissection Collaborative: Methods for building capacity for patient-centered outcomes research in the aortic dissection community

Author

Jenney R. Lee, Sarah O. Lawrence, Michael Soto, Melanie Case, Novelett Cotter, Jake Howitt, Timo Soderlund, Debra Trotter, Peter H. Byers, Sherene Shalhub, Novelett E. Cotter, Carmen C. David, Mark Fasano, Richard Goldenberg, Timo T. Söderlund, Asaf Rabin, Mattie Boehler-Tatman, Melissa L. Russo, Laura Marie Drudi, Laura L. Marks, Maisoon D. Yousif, Tabea Hoffstaetter, Ella Taubenfeld, Sreekanth Vemulapalli, Chrisanne S. Campos, Lindsey Rusche, Robert C.F. Pena, Firas F. Mussa, Gretchen MacCarrick, Earl Goldsborough, Christeen Samuel, Lillian Xu, Nicolas J. Mouawad, Eanas S. Yassa, Xiaoyi Teng, Amani Politano, Jesse Teindl, Lara Bloom, Rebecca Gluck, Meredith Ford O'Neal, Josephine Grima, Eileen Masciale, Takeyoshi Ota, Katelyn Wright, Alan J. Hakim, Gareth Owens, George J. Arnaoutakis, Dejah Judelson, Mario D'Oria, Lurdes del Rio-Sola, Mark Ajalat, Marvin Chau, Stephanie D. Talutis, Karen Woo, Max V. Wohlauer, Jeniann A. Yi, Kim A. Eagle, Marion A. Hofmann Bowman, Eva Kline-Rogers, Hyein Kim, Claudine Henoud, Scott Damrauer, Emilia Krol, Rana O. Afifi, Alana C. Cecchi, Madeline Drake, Anthony Estrera, Avery M Hebert, Dianna M. Milewicz, Siddharth K. Prakash, Aaron W. Roberts, Harleen Sandhu, Akili Smith-Washington, Akiko Tanaka, Jacob Watson, Myra Ahmad, Catherine M. Albright, Christopher R. Burke, L'Oreal Kennedy, Jonathan Medina, Thamanna Nishath, Julie Pham, Courtney Segal, Linell Catalan, Megan Patterson, and Nicole Ilonzo

Subjects
Patient Outcome Assessment, Aortic Dissection, Capacity Building, Surveys and Questionnaires, Humans, Surgery, Cardiology and Cardiovascular Medicine
Abstract

Understanding what matters most to patients can help guide research in a direction that is best situated to provide evidence that is responsive to their core concerns. This can better inform the treatment decision-making process for patients and their physicians. The Aortic Dissection (AD) Collaborative built a collaborative AD research infrastructure involving patients and other stakeholders to facilitate patient-centered outcomes research training, support, and networking among those affected by AD. Two surveys and semi-structured interviews were conducted between January and October 2020 to gather information from people with and at risk for AD and their family members to better understand their experiences and needs. Discussion of survey and interview results were then articulated as seven key topics for future research to meet the needs of the AD community. Working groups were assembled to address each of the key topics. The groups conducted landscape reviews that were focused on providing guidance for future research that directly addresses the needs identified by the AD community. Recommendations for future research generated by the working groups were compiled by the Aortic Dissection Collaborative. From these recommendations, the Aortic Dissection Collaborative advisors and stakeholders identified high-priority research questions. The research questions form the basis for a third survey, disseminated to the Virtual Research Network between November 2021 and February 2022. Final analysis of the survey will identify top ranked research questions and assess willingness to participate. These results will inform the development of future patient-centered outcomes research and comparative effectiveness research proposals.

Published
2022
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7. Knowledge gaps in surgical management for aortic dissection

Author

Akiko Tanaka, Avery M. Hebert, Akili Smith-Washington, Tabea Hoffstaetter, Richard Goldenberg, Sreekanth Vemulapalli, Lourdes del Río-Solá, George J. Arnaoutakis, Firas Mussa, Takeyoshi Ota, Melanie Case, Novelett E. Cotter, Carmen C. David, Mark Fasano, Jake Howitt, Timo T. Söderlund, Debra Trotter, Asaf Rabin, Mattie Boehler-Tatman, Melissa L. Russo, Laura Marie Drudi, Laura L. Marks, Maisoon D. Yousif, Ella Taubenfeld, Chrisanne S. Campos, Lindsey Rusche, Robert C.F. Pena, Firas F. Mussa, Gretchen MacCarrick, Earl Goldsborough, Christeen Samuel, Lillian Xu, Nicolas J. Mouawad, Eanas S. Yassa, Xiaoyi Teng, Amani Politano, Jesse Teindl, Lara Bloom, Rebecca Gluck, Meredith Ford O'Neal, Josephine Grima, Eileen Masciale, Katelyn Wright, Alan J. Hakim, Gareth Owens, Dejah Judelson, Mario D'Oria, Lurdes del Rio-Sola, Mark Ajalat, Marvin Chau, Stephanie D. Talutis, Karen Woo, Max V. Wohlauer, JeniannA. Yi, Kim A. Eagle, Marion A. Hofmann Bowman, Eva Kline-Rogers MS, Hyein Kim, Claudine Henoud, Scott Damrauer, Emilia Krol, Rana O. Afifi, Alana C. Cecchi, Madeline Drake, Anthony Estrera, Avery M Hebert, Dianna M. Milewicz, Siddharth K. Prakash, Aaron W. Roberts, Harleen Sandhu, Jacob Watson, Myra Ahmad, Catherine M. Albright, Christopher R. Burke, Peter H. Byers, L'Oreal Kennedy, Sarah O. Lawrence, Jenney R. Lee, Jonathan Medina, Thamanna Nishath, Julie Pham, Courtney Segal, Sherene Shalhub, Michael Soto, Linell Catalan, Megan Patterson, and Nicole Ilonzo

Subjects
Aortic Dissection, Endovascular Procedures, Humans, Surgery, Aorta, Thoracic, Stents, Cardiology and Cardiovascular Medicine, Aorta
Abstract

Aortic dissection (AD) is recognized as a potentially fatal condition and its standard treatment has been surgical intervention for acute type A AD (TAAD) and complicated acute type B AD (TBAD), and medical management for uncomplicated acute type B AD. Due to rapidly evolving device technologies and minimally invasive surgical techniques that have lowered perioperative risk, there are paradigm shifts for the indications and treatment options for both TAAD and TBAD. In this article, we will discuss the current indications and treatment options for TAAD and TBAD by chronicity of the disease, which comprises four categories: acute TAAD, chronic (repaired) TAAD, acute TBAD, and chronic TBAD. We will also discuss the knowledge gaps in the current surgical management strategies and literature evidence. Open surgical intervention remains the reference standard for acute TAAD and chronic TAAD with complications until an endoprosthesis that will suit the complex anatomy of aortic root, ascending aorta, and aortic arch is developed. Thoracic endovascular aortic repair is now the first line for complicated acute and chronic TBADs. However, we need a larger trials to support the safety and durability of the procedures in patients with uncomplicated TBAD. Without additional data, patients are left to choose between existing treatment options, such as open surgical repair and stent-grafting.

Published
2021

8. Stakeholder perspectives on education in aortic dissection

Author

Stephanie D. Talutis, Jacob Watson, Earl Goldsborough, Eileen Masciale, Karen Woo, Melanie Case, Novelett E. Cotter, Carmen C. David, Mark Fasano, Richard Goldenberg, Jake Howitt, Timo T. Söderlund, Debra Trotter, Asaf Rabin, Mattie Boehler-Tatman, Melissa L. Russo, Laura Marie Drudi, Laura L. Marks, Maisoon D. Yousif, Tabea Hoffstaetter, Ella Taubenfeld, Sreekanth Vemulapalli, Chrisanne S. Campos, Lindsey Rusche, Robert C.F. Pena, Firas F. Mussa, Gretchen MacCarrick, Christeen Samuel, Lillian Xu, Nicolas J. Mouawad, Eanas S. Yassa, Xiaoyi Teng, Amani Politano, Jesse Teindl, Lara Bloom, Rebecca Gluck, Meredith Ford O'Neal, Josephine Grima, Takeyoshi Ota, Katelyn Wright, Alan J. Hakim, Gareth Owens, George J. Arnaoutakis, Dejah Judelson, Mario D'Oria, Lurdes del Rio-Sola, Mark Ajalat, Marvin Chau, Max V. Wohlauer, JeniannA. Yi, Kim A. Eagle, Marion A. Hofmann Bowman, Eva Kline-Rogers MS, Hyein Kim, Claudine Henoud, Scott Damrauer, Emilia Krol, Rana O. Afifi, Alana C. Cecchi, Madeline Drake, Anthony Estrera, Avery M Hebert, Dianna M. Milewicz, Siddharth K. Prakash, Aaron W. Roberts, Harleen Sandhu, Akili Smith-Washington, Akiko Tanaka, Myra Ahmad, Catherine M. Albright, Christopher R. Burke, Peter H. Byers, L'Oreal Kennedy, Sarah O. Lawrence, Jenney R. Lee, Jonathan Medina, Thamanna Nishath, Julie Pham, Courtney Segal, Sherene Shalhub, Michael Soto, Linell Catalan, Megan Patterson, and Nicole Ilonzo

Subjects
Aortic Dissection, Humans, Learning, Surgery, Cardiology and Cardiovascular Medicine
Abstract

The Aortic Dissection (AD) Collaborative was established to evaluate patient-centered research priorities in AD. Education was identified as a topic of interest by the stakeholders. The AD Collaborative Education Working Group evaluated existing educational resources and identified areas amenable to comparative effectiveness research. The most important positive qualities of available AD education resources are ease of use, diversity of representation, accessibility, and organization. The most important negative qualities of these resources are non-patient-centered language, promotional themes, and those with limited applicability and accessibility. Through a series of focus groups, the Working Group identified target audiences for AD education and educational material content and critically assessed and prioritized barriers to effective AD education. Both the target audiences and the barriers include clinicians and patients themselves. The Working Group defined initiatives to overcome barriers, to include a comprehensive, universally agreed on AD resource that is updated in real time and making education accessible to all relevant target audiences. The Working Group then prioritized needs for comparative effectiveness research in AD education and determined that clinician education is the top priority for future efforts. The Working Group determined that assessment and evaluation of specific and appropriate screening strategies is the second most important priority. Finally, the Working Group identified patient education as the third most important priority, specifically determining how patients and their support groups learn best, the ideal strategies for information dissemination, and methods of assessing understanding and satisfaction with the education process.

Published
2021

9. A mixed method approach to understanding the impact of COVID-19 on patients with or at risk for aortic dissection

Author

Jenney R. Lee, Courtney Segal, Jake Howitt, Sarah O. Lawrence, Josephine Grima, Kim Eagle, Karen Woo, Peter Byers, Eva Klein-Rogers, Dianna Milewicz, Firas Mussa, Timo Soderlund, Novelette Cotter, Melanie Case, Debra Trotter, Sherene Shalhub, Novelett E. Cotter, Carmen C. David, Mark Fasano, Richard Goldenberg, Timo T. Söderlund, Asaf Rabin, Mattie Boehler-Tatman, Melissa L. Russo, Laura Marie Drudi, Laura L. Marks, Maisoon D. Yousif, Tabea Hoffstaetter, Ella Taubenfeld, Sreekanth Vemulapalli, Chrisanne S. Campos, Lindsey Rusche, Robert C.F. Pena, Firas F. Mussa, Gretchen MacCarrick, Earl Goldsborough, Christeen Samuel, Lillian Xu, Nicolas J. Mouawad, Eanas S. Yassa, Xiaoyi Teng, Amani Politano, Jesse Teindl, Lara Bloom, Rebecca Gluck, Meredith Ford O'Neal, Eileen Masciale, Takeyoshi Ota, Katelyn Wright, Alan J. Hakim, Gareth Owens, George J. Arnaoutakis, Dejah Judelson, Mario D'Oria, Lurdes del Rio-Sola, Mark Ajalat, Marvin Chau, Stephanie D. Talutis, Max V. Wohlauer, Jeniann A. Yi, Kim A. Eagle, Marion A. Hofmann Bowman, Eva Kline-Rogers, Hyein Kim, Claudine Henoud, Scott Damrauer, Emilia Krol, Rana O. Afifi, Alana C. Cecchi, Madeline Drake, Anthony Estrera, Avery M Hebert, Dianna M. Milewicz, Siddharth K. Prakash, Aaron W. Roberts, Harleen Sandhu, Akili Smith-Washington, Akiko Tanaka, Jacob Watson, Myra Ahmad, Catherine M. Albright, Christopher R. Burke, Peter H. Byers, L'Oreal Kennedy, Jonathan Medina, Thamanna Nishath, Julie Pham, Michael Soto, Linell Catalan, Megan Patterson, and Nicole Ilonzo

Subjects
Aortic Dissection, COVID-19, Humans, Surgery, Cardiology and Cardiovascular Medicine, Pandemics, Aorta
Abstract

Aortic dissection (AD) is a life-threatening rare disease that occurs as a spontaneous tear in the wall of the aorta. Survivors of AD go on to have a chronic disease process that requires lifelong follow-up and management. Although the COVID-19 pandemic has strained health systems and impacted practice in the United States, the effects of these impacts on people living with or at risk for AD is not well understood. This mixed methods project examined the experiences of people in the AD community during the COVID-19 pandemic between March and October 2020. Results reveal that the AD community lacked clear guidance on the role aortic health status plays in COVID-19 risk and experienced significant disruptions in aortic healthcare. At the same time, the new expansion in access to medical care with telehealth conferred unforeseen benefits in the form of reduced barriers for access to specialized aortic health care.

Published
2021

10. Lived experiences of people with or at risk for aortic dissection: A qualitative assessment

Author

Jenney R. Lee, Courtney Segal, Jake Howitt, Melanie Case, Novelett Cotter, Timo Soderlund, Debra Trotter, Sarah O. Lawrence, Sherene Shalhub, Novelett E. Cotter, Carmen C. David, Mark Fasano, Richard Goldenberg, Timo T. Söderlund, Asaf Rabin, Mattie Boehler-Tatman, Melissa L. Russo, Laura Marie Drudi, Laura L. Marks, Maisoon D. Yousif, Tabea Hoffstaetter, Ella Taubenfeld, Sreekanth Vemulapalli, Chrisanne S. Campos, Lindsey Rusche, Robert C.F. Pena, Firas F. Mussa, Gretchen MacCarrick, Earl Goldsborough, Christeen Samuel, Lillian Xu, Nicolas J. Mouawad, Eanas S. Yassa, Xiaoyi Teng, Amani Politano, Jesse Teindl, Lara Bloom, Rebecca Gluck, Meredith Ford O'Neal, Josephine Grima, Eileen Masciale, Takeyoshi Ota, Katelyn Wright, Alan J. Hakim, Gareth Owens, George J. Arnaoutakis, Dejah Judelson, Mario D'Oria, Lurdes del Rio-Sola, Mark Ajalat, Marvin Chau, Stephanie D. Talutis, Karen Woo, Max V. Wohlauer, JeniannA. Yi, Kim A. Eagle, Marion A. Hofmann Bowman, Eva Kline-Rogers MS, Hyein Kim, Claudine Henoud, Scott Damrauer, Emilia Krol, Rana O. Afifi, Alana C. Cecchi, Madeline Drake, Anthony Estrera, Avery M Hebert, Dianna M. Milewicz, Siddharth K. Prakash, Aaron W. Roberts, Harleen Sandhu, Akili Smith-Washington, Akiko Tanaka, Jacob Watson, Myra Ahmad, Catherine M. Albright, Christopher R. Burke, Peter H. Byers, L'Oreal Kennedy, Jonathan Medina, Thamanna Nishath, Julie Pham, Michael Soto, Linell Catalan, Megan Patterson, and Nicole Ilonzo

Subjects
Aortic Dissection, Mental Health, Patient-Centered Care, Quality of Life, Humans, Surgery, Cardiology and Cardiovascular Medicine
Abstract

Aortic dissection (AD) is a life-changing event that is often accompanied by a loss of normal quality of life. Survivors of AD go on to have a chronic disease that requires lifestyle modification, medical management, and surgical repair of the aorta. Clinical care includes multiple disciplines, health care settings, and often different geographic locations. This qualitative assessment examined the experiences of people with and at risk for AD. The following four themes emerged: "unnecessary drama" at diagnosis, unmet needs for information and support, the burden of self-advocacy and care coordination, and living with unaddressed mental health impacts. Our findings inform recommendations to advance patient-centered care delivery for individuals with and at risk for AD, improving communication of timely and relevant information, and an approach to care that acknowledges the whole person in clinical decision making.

Published
2021

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