A5083649627- Childhood Cancer Survivors' Quality of Life
- Palliative Care and End-of-Life Issues
- Family and Patient Care in Intensive Care Units
- Ethics and Legal Issues in Pediatric Healthcare
- Adolescent and Pediatric Healthcare
- Family Support in Illness
- Child and Adolescent Health
- Healthcare Policy and Management
- Ethics in medical practice
- Grief, Bereavement, and Mental Health
- Respiratory Support and Mechanisms
- Intensive Care Unit Cognitive Disorders
- Pharmaceutical Practices and Patient Outcomes
- Diabetes and associated disorders
- Pharmaceutical studies and practices
- Family and Disability Support Research
- Primary Care and Health Outcomes
- Neurological and metabolic disorders
- Patient Safety and Medication Errors
- Cardiac Arrest and Resuscitation
- Health Systems, Economic Evaluations, Quality of Life
- Diet and metabolism studies
- Humor Studies and Applications
- COVID-19 Clinical Research Studies
- Interprofessional Education and Collaboration
Boston Children's Hospital
2014-2025
Harvard University
2017-2024
Boston Children's Museum
2013-2022
Objectives: For children, adolescents, and young adults with complex chronic conditions advance care planning may be a vital component of optimal care. Advance outcomes research has previously focused on seriously ill adolescents cancer where it is correlated high-quality end-of-life The impact for unknown, thus we sought to evaluate parental preferences determine whether assessment specific family considerations during were associated differences in parent-reported outcomes. Design:...
Cerebral edema in diabetic ketoacidosis is a devastating complication with significant morbidity and mortality. This entity has traditionally been treated mannitol, but use of 3% hypertonic saline become an accepted alternative. We sought to assess if changes the hyperosmolar therapies for treatment cerebral may have influenced mortality over last decade.Retrospective cohort study.Patients discharged between 1999 2009 from 41 children's hospitals that provided data Pediatric Health...
Importance Pediatric advance care planning (ACP), which aims to ensure is aligned with family goals and values, associated better end-of-life outcomes; however, ACP in pediatrics remains uncommon. Objectives To determine the feasibility acceptability of Serious Illness Communication Program (PediSICP) explore family-centered outcomes. Design, Setting, Participants This cohort study was a single-group pilot PediSICP adolescents young adults (AYAs; age ≥13 y) serious illness, parents seriously...
BACKGROUND: Children with neurologic impairment (NI) are at risk for developing co-occurring chronic conditions, increasing their medical complexity and morbidity. We assessed the prevalence timing of onset those conditions in children NI. METHODS: This longitudinal analysis included 6229 born 2009 continuously enrolled Medicaid through 2015 a diagnosis NI by age 3 IBM Watson MarketScan Database. was defined an existing diagnostic code set encompassing neurologic, genetic, metabolic that...
Background: Early advance care planning (ACP) is associated with improved outcomes in pediatrics, yet few rigorously developed curricula exist to train interprofessional clinicians ACP communication. Objectives: To develop, pilot and evaluate an evidence-based virtual clinician training a pediatric serious illness communication program (PediSICP) facilitate ACP. Primary were learner self-assessment of skills attainment satisfaction. Methods: We interactive, skills-based three-hour...
Background/Objective: Adolescents and young adults with complex chronic conditions parents of children interact frequently the healthcare system. However, these groups have unique characteristics needs. The objective this qualitative study was to explore compare roles that adolescents take on when engaging Methods: Semi-structured interviews were conducted seven nine at two pediatric centers from December 2018 April 2019. research team thematic analysis. Transcripts coded independently by...
Little is known about the use of chronic medications (CMs) in children. We assessed prevalence CM children and association clinical characteristics health care resource with number CMs used.This a retrospective study ages 1 to 18 years using Medicaid from 10 states 2014 grouped by annual (0, 1, 2-4, 5-9, ≥10 medications), which are defined as dispensed ≥30-day prescription ≥2 refills. Trends were evaluated Cochran-Armitage trend test.Of 4 594 061 subjects, 18.8% used CMs. was 44.4% complex...
This is a novel case of 16-month-old boy with history prematurity intrauterine growth restriction, severe failure to thrive, microcephaly, pachygyria, agenesis the corpus callosum, and postnatal embolic stroke, who presented new-onset diabetes mellitus diabetic ketoacidosis in setting acute respiratory syndrome coronavirus 2 infection, course complicated by atypical hemolytic (aHUS). patient demonstrated remarkable insulin resistance period before aHUS diagnosis, which resolved first dose...
Children with complex chronic conditions often receive inpatient and end-of-life care in the ICU, yet little is known about clinical strategies that best support this unique group of parents. This study aimed to elucidate supportive identified by bereaved parents children conditions.Qualitative analysis 21 open-response items from cross-sectional "Survey Caring for Complex Chronic Conditions" querying communication, decision-making, experiences.Large tertiary children's hospital.Parents who...
Objectives: Although medication reconciliation has become standard during hospital admission, rates of unintentional discrepancies intensive care pediatric patients with chronic disease are unknown. Such an important cause adverse drug events in adults illness and associated discontinuation medications. We sought to determine the rate, type, timing, predictors potentially harmful children young disease. Design: Prospective observational cohort study. Setting: Patients discharged from...
Objective This study aimed to evaluate the impact of advance care planning (ACP) on parent-reported end-of-life (EOL) outcomes in neonatal intensive unit (NICU). Study Design Single-center, cross-sectional mixed-methods survey bereaved parents who experienced death a child Boston Children's Hospital NICU between 2010 and 2021. Logistic regression, chi-square test, Fisher's exact Wilcoxon rank-sum test were used relationship ACP EOL outcomes. Qualitative content was analyzed through inductive...
Neurologic deterioration associated with cerebral edema in diabetic ketoacidosis is typically sudden onset, progresses rapidly, and requires emergent treatment. The utility of brain imaging by head CT decisions to treat for has not been previously studied. objective this study was describe the characteristics pediatric patients who develop altered mental status evaluate role cohort.Retrospective analysis clinical, biochemical, radiologic data.Tertiary care children's hospital (2004-2010).Six...
Many NICUs have reached an inflection point where infant deaths following limitation of life-sustaining treatments outnumber those unsuccessful resuscitations, and many infants who survive continue to require intensive supports. Families such with serious illness may benefit from a standardized, process-oriented approach in decisional-support. Advance care planning (ACP), or communication that supports patients, their surrogate decision-makers, sharing values, goals, preferences for future...
Objective Our objective was to evaluate the preferences and experiences of bereaved parents around advance care planning (ACP) in neonatal intensive unit (NICU). Study Design Single-center cross-sectional survey who experienced death a child Boston Children's Hospital NICU between 2010 2021 carried out. Chi-square, Fisher's exact, Fisher Freeman Halton, Wilcoxin rank sum tests were used differences did not receive ACP. Results Out eligible parents, 40 out 146 (27%) responded our survey. Most...
Background: Pediatric palliative care (PPC) consultation is infrequent among children on extracorporeal membrane oxygenation (ECMO). Objective: Investigate intensive unit (ICU) team members' perceptions of automatic PPC for ECMO in an ICU the United States. Methods: Cross-sectional survey assessing benefits, barriers to PPC, and processes. Results: Of 291 eligible respondents, 48% (n = 140) completed 16% 47) answered open-ended question. Benefits included support decision-making 98; 70%)...
OBJECTIVE Children with complex chronic conditions (CCCs) and their parents benefit from supportive serious illness care when are severe impact quality of life stress. This includes not only expert medical but also effective relationships the clinical team. Existing data suggest that there opportunities for improvement. study’s aim was to explore important aspects resources facilitate among children CCCs parents. METHODS We conducted semistructured interviews adolescents young adults (AYAs)...