Engaging adolescents and young adults in decisions about return of genomic research results: study protocol for a mixed-methods longitudinal clinical trial protocol.

Background: To protect minors' future autonomy, professional organizations have historically discouraged returning predictive adult-onset genetic test results and carrier status to children. Recent clinical guidance diverges from this norm, suggesting that when minors have genomic sequencing performed for clinical purposes, parents and children should have the opportunity to learn secondary findings, including for some adult-onset conditions. While parents can currently opt in or out of receiving their child's secondary findings, the American Society of Human Genetics Workgroup on Pediatric Genetic and Genomic Testing suggests including adolescents in the decision-making process.

Increasing Follow-up for Adolescents With Depressive Symptoms.

Background: Prompt follow-up for positive depression screen results is important in providing high-quality care for adolescents. We sought to improve follow-up within 30 days for adolescents (≥12 years) with Patient Health Questionnaire-9 scores ≥10, or those with a positive question 9, from 25% to 40%.

Methods: We conducted a quality improvement project at 6 primary care locations serving ∼33,300 patients (70% Black, 7.

Neurocognitive Dysfunction After Short (<20 Minutes) Duration Hypothermic Circulatory Arrest.

Background: It has long been held that the safe duration of hypothermic circulatory arrest (HCA) is at least 25 to 30 minutes. However, this belief is based primarily on clinical outcomes research and has not been systematically investigated using more sensitive brain imaging and neurocognitive assessments.

Methods: This exploratory substudy of the randomized Cognitive Effects of Body Temperature During Hypothermic Circulatory Arrest (GOT ICE) trial, which compared outcomes for deep vs moderate hypothermia during aortic arch surgery, investigated the frequency of neurocognitive and structural and functional magnetic resonance imaging (MRI) deficits with HCA of short (<20 minutes) duration.

Improving Screening for Social Determinants of Health in an Outpatient Complex Care Clinic.

Background: Families of children with medical complexity (CMC) may face challenges related to Social Determinants of Health (SDoH). Although standardized SDoH screening has been implemented in numerous medical settings, there has been limited study of screening among CMC. Our global aim is to improve access to institutional and community resources for families of CMC with identified needs.

Outcomes of a Novel Single Branched Aortic Stent Graft for Treatment of Type B Aortic Dissection.

Background: Intervention on Type B dissection frequently requires landing the proximal edge of the stent graft between the left common carotid artery and left subclavian artery (LSA). The Gore® TAG® Thoracic Branch Endoprosthesis (TBE) is a technology which allows LSA preservation with a single internal branch.

Methods: This study was a prospective non-randomized single-arm clinical trial of patients with type B aortic dissection that were treated with the single branched device.

Hospital and surgeon surgical valvar volume and survival after multivalve cardiac surgery in Medicare beneficiaries.

Objective: Long-term outcomes after multivalve cardiac surgery remain underevaluated.

Methods: Medicare administrative claims from 2008 to 2019 identified beneficiaries undergoing multivalve surgery. Operative characteristics were doubly adjudicated using International Classification of Diseases and Current Procedural Technology codes.

Five-Year Outcomes of Measured and Predicted Prosthesis-Patient Mismatch following Transcatheter Aortic Valve Implantation.

Data on the long-term outcomes of prosthesis patient mismatch (PPM) after transcatheter aortic valve implantation (TAVI) remain controversial. This study aimed to investigate the incidence and clinical outcomes of measured PPM (PPM) and predicted PPM (PPM) in patients who underwent TAVI. This is a retrospective analysis of 3,016 patients who underwent TAVI at a large health care system between 2012 and 2021.

A novel hybrid prosthesis for open repair of acute DeBakey type I dissection with malperfusion: Early results from the PERSEVERE trial.

Background: Outcomes after hemiarch repair for acute DeBakey type I aortic dissection (ADTI) remain unfavorable, with high rates of major adverse events and negative aortic remodeling. The PERSEVERE study evaluates the safety and effectiveness of the AMDS Hybrid prosthesis, a novel bare metal stent, in patients presenting with preoperative malperfusion.

Methods: PERSEVERE is a prospective single-arm investigational study conducted at 26 sites in the United States.

Midterm durability of valve-sparing root replacement in bicuspid and tricuspid aortic valves.

Background: Among patients with bicuspid aortic valves (BAV) who are potential candidates for valve-sparing root replacement (VSRR), the long-term durability of this technique is not well understood. This study aimed to compare the clinical and echocardiographic outcomes of VSRR in those with BAV and tricuspid aortic valve (TAV) morphology.

Methods: This was a retrospective analysis of patients who underwent VSRR between 2007 and 2021 at a single center.

Impact of nondiameter aortic indices on surgical eligibility: Results from the Treatment in Thoracic Aortic Aneurysm: Surgery Versus Surveillance (TITAN: SvS) randomized controlled trial.

Objectives: Traditional criterion for intervention on an asymptomatic ascending aortic aneurysm has been a maximal aortic diameter of 5.5 cm or more. The 2022 American College of Cardiology/American Heart Association aortic guidelines adopted cross-sectional aortic area/height ratio, aortic size index, and aortic height index as alternate parameters for surgical intervention.

Cognitive Effects of Body Temperature During Hypothermic Circulatory Arrest Trial (GOT ICE): A Randomized Clinical Trial Comparing Outcomes After Aortic Arch Surgery.

Background: Deep hypothermia has been the standard for hypothermic circulatory arrest (HCA) during aortic arch surgery. However, centers worldwide have shifted toward lesser hypothermia with antegrade cerebral perfusion. This has been supported by retrospective data, but there has yet to be a multicenter, prospective randomized study comparing deep versus moderate hypothermia during HCA.

Effect of Automated and Personalized Outreach Messages on Well-Child Visit Catch Up: A Randomized Clinical Trial.

Objective: To determine the effectiveness of text/telephone outreach messages and personal contact attempts on well-child care (WCC) scheduling and completion and measles, mumps, and rubella (MMR) vaccine receipt.

Methods: We conducted an intent-to-treat, 2 × 2 factorial randomized clinical trial with 3 replications at 3 academic pediatric primary care practices from September 27, 2020 to August 6, 2021. We randomized participants to 1 of 4 groups: 1 automated message (group 1), 2 automated messages (group 2), 1 automated message plus personal contact attempts (group 3), or 2 automated messages plus personal contact attempts (group 4).

Emergency and Compassionate Use of a Novel Ascending Endograft for Ascending and Arch Aortic Pathology.

Purpose: Patients with complicated ascending aortic pathology, including patients with acute type A aortic dissection may be at extreme risk for open repair. Thoracic endovascular aortic repair (TEVAR), infrequently used for the ascending aorta, may be considered an alternative in this setting. We describe early results for emergency and compassionate (E&C) use of a novel endograft, specifically designed for use to treat pathology of the ascending aorta.

Decisional Support Needed when Facing Tough Decisions: Survey of Parents with Children having Differences of Sex Development.

Introduction: Parents of infants and young children newly diagnosed with differences of sex development (DSD) commonly face medical and psychosocial management decisions at a time when they are first learning about the condition and cannot consult their child for input. The aim of this study was to identify areas of greatest need for parental decisional support.

Methods: 34 parents of children receiving care for DSD at one of three US children's hospitals participated in a survey to learn what clinical and psychosocial decisions needed to be made on behalf of their child.

Co-creating a suite of patient decision aids for parents of an infant or young child with differences of sex development: A methods roadmap.

Introduction: Parents and guardians of infants and young children with differences of sex development (DSD) often face numerous health and social decisions about their child's condition. While proxy health decisions can be stressful in any circumstance, they are further exacerbated in this clinical context by significant variations in clinical presentation, parental lack of knowledge about DSD, irreversibility of some options (e.g.

Measure of Caregiver Attention-Deficit/Hyperactivity Disorder Knowledge Is Responsive to Decision Aid on Treatment for Attention-Deficit/Hyperactivity Disorder.

Objective: Adapt and test a measure of knowledge for caregivers of children with attention-deficit/hyperactivity disorder (ADHD) and evaluate the impact of the information component of a decision aid (DA) on participant knowledge.

Methods: A set of seven knowledge items were created based on prior knowledge measures and clinical guidelines. As part of a larger cross-sectional survey study of caregivers of children diagnosed with ADHD, caregivers were randomized to one of two arms: 1) a DA arm, where participants reviewed the information component of the Cincinnati Children's Hospital's DA, and 2) a control arm, where participants were not shown a DA.

"I'd like more options!": Interviews to explore young people and family decision-making needs for pain management in juvenile idiopathic arthritis.

Background: Juvenile idiopathic arthritis (JIA) is a common pediatric rheumatic condition and is associated with symptoms such as joint pain that can negatively impact health-related quality of life. To effectively manage pain in JIA, young people, their families, and health care providers (HCPs) should be supported to discuss pain management options and make a shared decision. However, pain is often under-recognized, and pain management discussions are not optimal.

Outcomes of the Ross procedure in patients older versus younger than 50 years old.

Objectives: The Ross procedure is traditionally considered for young adult patients with aortic valve disease. This study compares long-term outcomes of patients undergoing the Ross procedure who are ≥50 and <50-years old.

Methods: Data were collected from 225 patients undergoing Ross procedure at a single centre from 1994 to 2019.

Real-world comparative claims analysis of a novel single-branched aortic stent graft device versus thoracic endograft placement with extra-anatomic debranching/revascularization in zone 2 aortic disease.

Background: Thoracic endovascular aortic repair (TEVAR) involving landing zone 2 can require extra-anatomic debranching (SR-TEVAR) to ensure left subclavian artery perfusion, resulting in increased costs. A single-branch device (Thoracic Branch Endoprosthesis [TBE], WL Gore, Flagstaff, AZ) provides a total endovascular solution. Comparative cost analysis of patients undergoing zone 2 TEVAR requiring left subclavian artery preservation with TBE versus SR-TEVAR is presented.

Adolescent Decision-Making Involvement in the Receipt of Genomic Testing Results.

Objective: To examine hypothesized predictors of adolescent and parent involvement in the decision about which genomic results to receive.

Study Design: We conducted a longitudinal cohort study during phase 3 of the electronic Medical Records and Genomics (eMERGE) Network. Dyads reported on how they preferred to make choices (adolescent only, parent only, or jointly).