Publications by authors named "Roni M Jacobsen"

As health care outcomes improve the priority for those living with adult congenital heart disease have changed to a more holistic focus on quality of life and well-being. Although health care has embraced this, there are still areas where there is a deficit in advice, allyship, and advocacy. One of these deficits is in the area of sexual health and well-being.

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  • Adult congenital heart disease (ACHD) is linked to high rates of psychological trauma and post-traumatic stress disorder (PTSD), yet research on PTSD using the DSM-5 criteria in this population is limited.
  • In a study of 158 ACHD patients, 30% screened positive for PTSD, with factors like younger age, nonwhite race, heart failure, and low social support contributing to higher PTSD rates.
  • Despite a majority of the patients having seen a mental health provider, only 29% had a known PTSD diagnosis, indicating a gap in effective diagnosis and treatment for trauma-related issues in this group.*
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Background: Transgender and gender diverse (TGD) individuals and long-term survivors with adult congenital heart disease (ACHD) are both growing populations with specialized needs. No studies assess temporal trends or evaluate the care of TGD individuals with ACHD.

Methods And Results: Meetings between congenital cardiology and gender-affirming care specialists identified unique considerations in TGD individuals with ACHD.

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Fontan patients have decreased exercise capacity which further declines throughout adolescence. A positive exercise capacity trajectory in children predicts better adult Fontan outcomes. Hospital-based physical activity programs improve exercise capacity and attenuate the age-expected decline in Fontan patients.

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  • An increasing number of adult Fontan patients are needing heart or combined heart-liver transplants, but there is limited data on their outcomes and ideal referral timing.
  • This study analyzed 131 adult Fontan patients who underwent transplantation between 1995 and 2021, finding a 79% survival rate at one year and 66% at five years post-transplant, with improved outcomes noted in patients transplanted after 2010.
  • Late referrals and certain health indicators like poor functional status and specific vascular issues were linked to lower survival rates, highlighting the importance of timely evaluations.
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  • - The study investigates the effects of Fontan-associated liver disease (FALD) on post-transplant outcomes, specifically looking at heart transplant (HT) versus combined heart-liver transplant (CHLT) in adult Fontan patients.
  • - Results showed that CHLT patients were generally older and had higher FALD scores, but they exhibited better survival rates compared to HT, particularly in those with higher FALD scores.
  • - The research indicates a correlation between higher FALD scores and increased mortality post-transplant, suggesting that CHLT may offer improved survival outcomes for patients with significant liver disease.
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Hypertension (HTN) is common in patients with a history of coarctation of the aorta (CoA) and remains underrecognized and undertreated. Studies in the non-coarctation otherwise healthy adult population have correlated an exaggerated blood pressure response during mild to moderate exercise with subsequent diagnosis of HTN. The goal of this study was to determine if blood pressure response to submaximal exercise in normotensive CoA patients correlated with development of HTN.

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Background: Adolescents and adults with CHD have increased risk for IE because of anatomic anomalies and burden of intracardiac prosthetic material. There are significant challenges in determining primary surgical or medical management along with limited guidelines to determine management.

Methods: A retrospective review was performed at both the University of Colorado Hospital and Children's Hospital Colorado of patients 12 years of age and older with CHD who were treated for IE between 2009 and 2019.

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Introduction: There is a paucity of literature evaluating the impact of and barriers to participation in cardiac rehabilitation (CR) in the adult congenital heart disease population. The aims of this study were to evaluate the impact of CR on physical activity and health-related quality of life, as well as to evaluate the barriers to participation in CR in a post-operative adult congenital heart disease population.

Methods: Patients ≥18 yr of age seen in the Wisconsin Adult Congenital Heart Disease Program and post-open sternotomy surgery from 2010-2015 were eligible for inclusion.

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Introduction: Cardiac rehabilitation programmes for paediatric patients with congenital heart disease (CHD) have been shown to promote emotional and physical health without any associated adverse events. While prior studies have demonstrated the effectiveness of these types of interventions, there has been limited research into how the inclusion of psychological interventions as part of the programme impacts parent-reported and patient-reported quality of life.

Materials And Methods: Patients between the ages of 7 and 24 years with CHD completed a cardiac rehabilitation programme that followed a flexible structure of four in person-visits with various multidisciplinary team members, including paediatric psychologists.

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Purpose Of Review: The goal of this paper is to provide an overview of contemporary knowledge specific to the causes, management, and outcome of heart failure in children.

Recent Findings: While recently there have been subtle improvements in heart failure outcomes in children, these improvements lag significantly behind that of adults. There is a growing body of literature suggesting that pediatric heart failure is a unique disease process with age- and disease-specific myocardial adaptations.

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There is a growing population of patients living with congenital heart disease (CHD), now with more adults living with CHD than children. Adults with CHD have unique health care needs, requiring a thoughtful approach to cardiac, neurocognitive, mental, and physical health issues. They have increased risk of anxiety, depression, pragmatic language impairment, limited social cognition, worse educational attainment and unemployment, and delayed progression into independent adulthood.

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Background: Norwood palliation typically requires patch augmentation of the ascending aorta and aortic arch. Patients having undergone Norwood palliation are at risk of recurrent arch obstruction, the risk of which may be affected by the type of patch material used at the time of Norwood palliation. We sought to determine the freedom from neoaortic arch reintervention and overall survival in patients who underwent Norwood palliation utilizing porcine small intestinal submucosa (PSIS) as the patch material.

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We present our experience for patients who have undergone an anatomic repair (AR) for congenitally corrected transposition of the great arteries (CCTGA) at the Children's Hospital of Wisconsin. A retrospective chart review of patients who underwent AR for CCTGA from 2001 to 2015 was performed. The cohort consisted of 15 patients (74% male).

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Objective: Patients after Fontan operation for complex congenital heart disease (CHD) have decreased exercise capacity and report reduced health-related quality of life (HRQOL). Studies suggest hospital-based cardiac physical activity programs can improve HRQOL and exercise capacity in patients with CHD; however, these programs have variable adherence rates. The impact of a home-based cardiac physical activity program in Fontan survivors is unclear.

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Background: The externally supported Ross (supported Ross), consisting of a Dacron (DuPont, Wilmington, DE) graft to support the neoaortic root, has been used in adolescent and adult patients to prevent neoaortic dilatation. Outcomes after the supported Ross technique were compared with the Ross procedure using the standard aortic root replacement technique (standard Ross).

Methods: This was a retrospective analysis of 36 adolescent and young adult patients who underwent the Ross procedure between 1992 and 2013.

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