Background: Healthcare transition (HCT) is the process of moving a patient from pediatric, parent-supervised care to an independent, adult-centered model. This study assesses current HCT activities and explores the educational and system-based needs for effective HCT processes in a single institution.
Methods: We interviewed division/care program leaders at one academic tertiary-care children's hospital regarding HCT practices.
Objectives: Historically, head and neck lymphatic malformations (HNLM) have been managed through surgical and interventional procedures. Sirolimus was introduced in 2016 and has aided in symptomatic control of HNLM. The study objective was to assess healthcare utilization with the introduction of sirolimus for HNLM.
View Article and Find Full Text PDFAs medical educators, we have a responsibility to ensure our trainees are exposed to curricula dedicated to Diversity, Equity, and Inclusion (DEI), as illustrated by the Association of American Medical Colleges' recently released DEI Competencies Across the Curriculum. We designed and implemented a curriculum, Social Justice Rounds (SJR), that incorporates teaching on these topics directly into inpatient clinical work. SJR are brief team-based discussions facilitated by Pediatric Hospital Medicine faculty that focus on racism in medicine and other forms of discrimination experienced by patients and the effect it has on their interaction with the healthcare system.
View Article and Find Full Text PDFAm J Med Genet C Semin Med Genet
March 2024
Healthcare transition is the purposeful and planned process for preparing young adults with Down syndrome for an adult oriented healthcare system. Significant gaps of a delayed, incomplete, siloed and decentered transition can be avoided when transition is approached in a longitudinal and holistic manner. Young adults with Down syndrome are specifically vulnerable to these gaps as the combination of intellectual differences and healthcare complexity leads to the need for a process that allows for appropriate preparation to develop the skills and process for an appropriate.
View Article and Find Full Text PDFIntroduction: There is limited evidence on educational needs and preferences of pediatric health care professionals regarding transition from pediatric to adult health care.
Methods: We distributed an anonymous online survey to physicians and advanced practice providers at a large, free-standing children's hospital and associated primary care network to assess attitudes, practices, and educational preferences about transition. We analyzed data with descriptive statistics, chi-square, and logistic regression.
Individuals with Down syndrome (DS) are at increased risk for being overweight/obese, but the associated cardiometabolic risk (CR) is not clear. Cross-sectional anthropometric and clinical laboratory data from a multi-site, international cohort of individuals with DS were analyzed to determine cardiometabolic risk by reporting observed distributions of cardiometabolic biomarkers in overweight/obese individuals with DS throughout the lifespan. Descriptive statistics and regression analyses by age categories determined the distributive percentiles for cardiometabolic biomarkers and tested for adiposity as a predictor of CR.
View Article and Find Full Text PDFObjective: To develop standardization for nomenclature, diagnostic work up and diagnostic criteria for cases of neurocognitive regression in Down syndrome.
Background: There are no consensus criteria for the evaluation or diagnosis of neurocognitive regression in persons with Down syndrome. As such, previously published data on this condition is relegated to smaller case series with heterogenous data sets.
Int J Pediatr Otorhinolaryngol
June 2022
Background: Noninvoluting congenital hemangiomas (NICH) are rare and poorly understood vascular tumors that are present at birth, characterized by lack of growth after birth and lack of involution. We report uncharacteristic cases of NICH hypertrophy occurring later in life.
Methods: This is a case series describing the clinical presentation, management, and histologic characteristics of two cases of NICH hypertrophy.
Ann Otol Rhinol Laryngol
February 2023
Objective: PHACE is a rare syndrome that can present with airway hemangiomas. Management for these patients is variable and the utilization of operative endoscopic airway evaluation has not been described. The objectives of this study were to identify the incidence of airway symptoms in patients being evaluated for PHACE syndrome and determine the utility of operative endoscopy.
View Article and Find Full Text PDFBackground: Patients with Tetralogy of Fallot with pulmonary stenosis (ToF/PS), the most common form of cyanotic congenital heart disease (CHD), develop adverse right ventricular (RV) remodeling, leading to late heart failure and arrhythmia. We recently demonstrated that overactive β-adrenergic receptor signaling inhibits cardiomyocyte division in ToF/PS infants, providing a conceptual basis for the hypothesis that treatment with the β-adrenergic receptor blocker, propranolol, early in life would increase cardiomyocyte division. No data are available in ToF/PS infants on the efficacy of propranolol as a possible novel therapeutic option to increase cardiomyocyte division and potentially reduce adverse RV remodeling.
View Article and Find Full Text PDFInt J Pediatr Otorhinolaryngol
September 2021
Objectives: Children with Down syndrome (DS) have a higher incidence of tympanostomy tube insertion (TTI) than children in the general population. As there were no studies investigating factors that are associated with multiple TTIs in children with DS, we sought to determine what factors increase or decrease the likelihood of repeat TTI in children with DS.
Methods: A retrospective case-control study was performed on consecutive children with DS from 2007 to 2018 with first TTI at a large tertiary children's hospital and follow-up duration at least 27 months since first TTI.
Am J Med Genet A
October 2021
Transition to adulthood is a multifaceted process that requires integration of numerous domains within a young person's life, including their health care. For children with special health care needs, the transition process can be markedly more difficult to navigate. This is especially true for children with Down syndrome (DS) who receive fewer transition planning services.
View Article and Find Full Text PDFPediatric patients with anorexia nervosa and atypical anorexia nervosa may present to hospitals with significant vital sign instability or serum laboratory abnormalities necessitating inpatient medical hospitalization. These patients require specialized care, numerous resources, and interdisciplinary collaboration during what can be a protracted admission. Recent evidence informs areas in which care can be accelerated, and published protocols from major children's hospitals are helpful roadmaps to creating a streamlined hospitalization.
View Article and Find Full Text PDFObjective: (1) Review a multidisciplinary vascular anomalies center's practice regarding periprocedural anticoagulation for venous malformations (VM) and the associated risk of thromboembolic and disseminated intravascular coagulation (DIC) events. (2) Compare the risk of thromboembolic events and DIC post-procedure between head and neck (H&N) and extremity VM patients.
Methods: An Institutional Review Board (IRB)-approved, retrospective chart review was performed on 120 VM patients.
Unlabelled: Quality improvement (QI) is a core competency for Pediatric Hospital Medicine (PHM) and required for maintenance of certification, but many hospitalists lack QI training. This project set out to increase a PHM faculty's QI knowledge and comfort participating in QI projects, while concurrently applying the skills learned to a QI project in the hospital.
Methods: We designed a 4-session curriculum utilizing principles of adult learning.
The contrast-enhanced ultrasound (CEUS) imaging features of hepatic vascular tumors in infants, including infantile hemangioma (IH) and congenital hemangioma (CH), are not well reported. Frequent inaccurate use of lesion terminology in the literature has created diagnostic confusion. The purpose of this study is to describe the CEUS features of IH and CH.
View Article and Find Full Text PDFPurpose: An entity of regression in Down syndrome (DS) exists that affects adolescents and young adults and differs from autism spectrum disorder and Alzheimer disease.
Methods: Since 2017, an international consortium of DS clinics assembled a database of patients with unexplained regression and age- and sex-matched controls. Standardized data on clinical symptoms and tiered medical evaluations were collected.
Int J Pediatr Otorhinolaryngol
October 2018
Objective: A subglottic hemangioma (SGH) is a benign tumor of infancy that can cause severe obstruction of the airway. Infantile hemangiomas, in general, are the most common head and neck tumor in children, affecting 4-5% of the pediatric population. This retrospective cohort study characterizes subglottic infantile hemangiomas at a single vascular anomaly center over a 5-year period (2013-2017) during the era of propranolol treatment.
View Article and Find Full Text PDFA memory clinic used two key approaches in developing a patient and family handbook: partnership with people with memory loss and strengths-based social work practice. Social worker coeditors of the handbook intentionally sought guidance from people with mild to moderate memory loss regarding handbook content, design, and overall tone. A focus group, three sessions of a review group, e-mails, and personal interviews were used to solicit and review input from participants.
View Article and Find Full Text PDFInt J Pediatr Otorhinolaryngol
February 2017
Introduction: The internet is increasingly a source of healthcare information utilized by parents, especially in rarer pathologies such as vascular malformations. The quality, validity and thoroughness of these websites is variable and unregulated. The goal of this study was to evaluate the quality and understandability of websites related to vascular malformations.
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