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Article
Programmatic Palliative Care Consultations in Pediatric Heart Transplant Evaluations
Guidelines advocate for integrating palliative care into the management of heart failure (HF) and of children with life-limiting disease. The potential impact of palliative care integration into pediatric HF o...
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Article
Open AccessA Pediatric Interprofessional Cardiac Intensive Care Unit Intervention: CICU Teams and Loved Ones Communicating (CICU TALC) is Feasible, Acceptable, and Improves Clinician Communication Behaviors in Family Meetings
Parents of children in the pediatric cardiac intensive care unit (CICU) are often unprepared for family meetings (FM). Clinicians often do not follow best practices for communicating with families, adding to d...
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Article
The artificial placenta and EXTEND technologies: one of these things is not like the other
The so called “Artificial Placenta” and “Artificial Womb” (EXTEND) technologies share a common goal of improving outcomes for extreme premature infants. Beyond that goal, they are very dissimilar and, in our v...
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Article
Open AccessA coordinated approach for managing polypharmacy among children with medical complexity: rationale and design of the Pediatric Medication Therapy Management (pMTM) randomized controlled trial
Children with medical complexity (CMC) often rely upon the use of multiple medications to sustain quality of life and control substantial symptom burden. Pediatric polypharmacy (≥ 5 concurrent medications) is ...
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Article
How neonatologists use genetic testing: findings from a national survey
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Article
Open AccessDevelo** a family-reported measure of experiences with home-based pediatric palliative and hospice care: a multi-method, multi-stakeholder approach
Many children with serious illnesses are receiving palliative and end-of-life care from pediatric palliative and hospice care teams at home (PPHC@Home). Despite the growth in PPHC@Home, no standardized measure...
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Article
Open AccessA conceptual model of barriers and facilitators to primary clinical teams requesting pediatric palliative care consultation based upon a narrative review
Despite evidence that referral to pediatric palliative care reduces suffering and improves quality of life for patients and families, many clinicians delay referral until the end of life. The purpose of this a...
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Article
Medication use in infants with severe bronchopulmonary dysplasia admitted to United States children’s hospitals
To identify the number of cumulative medication exposures and most frequently used medications in infants with severe BPD.
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Article
The codesign of an interdisciplinary team-based intervention regarding initiating palliative care in pediatric oncology
Children with advanced cancer are often not referred to palliative or hospice care before they die or are only referred close to the child’s death. The goals of the current project were to learn about pediatri...
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Article
Symptom Monitoring in Pediatric Oncology Using Patient-Reported Outcomes: Why, How, and Where Next
Symptom monitoring using patient-reported outcomes (PROs) is not common in pediatric oncology, despite interest from stakeholders—including patients, families, clinicians, and regulatory organizations—and prov...
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Chapter
The Ethics of Managing Conflicts in the Era of Social Media
Increasingly, patients and families are engaging the media to influence transplant eligibility decisions for themselves or their family members. This chapter starts by reviewing the history of social media and...
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Article
Open AccessInterventions to cultivate physician empathy: a systematic review
Physician empathy is both theoretically and empirically critical to patient health, but research indicates that empathy declines throughout medical school and is lower than ideal among physicians. In this pape...
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Article
Open AccessPediatric complex chronic conditions classification system version 2: updated for ICD-10 and complex medical technology dependence and transplantation
The pediatric complex chronic conditions (CCC) classification system, developed in 2000, requires revision to accommodate the International Classification of Disease 10th Revision (ICD-10). To update the CCC c...
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Article
Open AccessPrevalence of abuse among young children with femur fractures: a systematic review
Clinical factors that affect the likelihood of abuse in children with femur fractures have not been well elucidated. Consequently, specifying which children with femur fractures warrant an abuse evaluation is ...
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Article
Open AccessRegoaling: a conceptual model of how parents of children with serious illness change medical care goals
Parents of seriously ill children participate in making difficult medical decisions for their child. In some cases, parents face situations where their initial goals, such as curing the condition, may have bec...
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Article
Open AccessThe pediatric rheumatology quality of life scale: validation of the English version in a US cohort of juvenile idiopathic arthritis
This study aims to validate the English version of the Pediatric Rheumatology Quality of Life Scale (PRQL), a concise Health Related Quality of Life (HRQoL) measure, in a US cohort of children with juvenile id...
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Article
Open AccessValidation of ICD-9-CM codes for identification of acetaminophen-related emergency department visits in a large pediatric hospital
Acetaminophen overdose is a major concern among the pediatric population. Our objective was to assess the validity of International Classification of Disease (ICD-9-CM) codes for identification of pediatric em...
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Article
Open AccessShared decision making and behavioral impairment: a national study among children with special health care needs
The Institute of Medicine has prioritized shared decision making (SDM), yet little is known about the impact of SDM over time on behavioral outcomes for children. This study examined the longitudinal associati...
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Article
Open AccessAssociation of neutrophil gelatinase-associated lipocalin (NGAL) and blood pressure in children with Henoch Schönlein Purpura
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Article
Open AccessThe test characteristics of head circumference measurements for pathology associated with head enlargement: a retrospective cohort study
The test characteristics of head circumference (HC) measurement percentile criteria for the identification of previously undetected pathology associated with head enlargement in primary care are unknown.
