Association of Palliative Care Timing with End-of-Life Quality in Children with Heart Disease.

Context: Children with heart disease are at risk for early mortality and parents often perceive suffering at end-of-life (EOL). Involvement of pediatric palliative care (PPC) is a proposed quality measure at the EOL in children with cancer, and early PPC involvement is associated with other quality measures. The impact of early PPC involvement on EOL quality is unknown in children with heart disease.

Comparison of 2 Models of Care for Children With Medical Complexity Following Spinal Fusion.

We conducted a retrospective chart review of patients with neuromuscular scoliosis following spinal fusion surgery who were cared for post-operatively by either a hospitalist/orthopedics co-management team or a complex care clinic (CCC). Assignment to either treatment group was not random. To account for baseline differences between groups, we calculated propensity scores and used these as probability weights in generalized linear models.

Mealtime Insulin BOLUS Score More Strongly Predicts HbA Than the Self-Care Inventory in Youth With Type 1 Diabetes.

Background: To meet their glycated hemoglobin (HbA) goals, youth with type 1 diabetes (T1D) need to engage with their daily T1D treatment. The mealtime insulin Bolus score (BOLUS) is an objective measure of youth's T1D engagement which we have previously shown to be superior to other objective engagement measures in predicting youth's HbA. Here, to further assess the BOLUS score's validity, we compared the strengths of the associations between youth's HbA with their mean insulin BOLUS score and a valid, self-report measure of T1D engagement, the Self-Care Inventory (SCI).

Patient and Clinician Perceptions of Factors Relevant to Ideal Specialty Consultations.

Importance: Inpatient subspecialty consultations, a common and expensive practice within inpatient medicine, do not always go well; however, little is known about the failure modes of consultation, thus making it difficult to identify interventions to improve consultation quality.

Objective: To understand how stakeholders envision the ideal inpatient consultation and identify how and why consultations commonly fall short of this ideal.

Design, Setting, And Participants: This qualitative study used in-depth, semistructured interviews collected from April to October 2017 and analyzed from January 2018 to February 2020 using conventional content analysis.

Durability of Changes in Biomarkers of Cardiometabolic Disease: 1-Year Family-Based Intervention in Children with Obesity.

The sustainability of health benefits in response to lifestyle-based interventions remains unclear in children with overweight and obesity, and cardiometabolic disease (CMD). We determined the changes in novel biomarkers of CMD in a 1-year family-based intervention (FBI) program, during 6-month active monitoring phase and at 12-month follow-up. Children with an age-adjusted body mass index (BMI) percentile ≥85 ( = 130; age 8-11 years) were recruited for a 1-year (6-month monitored and 6-month unmonitored) randomized controlled FBI program.

Building an Ethical Organizational Culture.

The success of a health care institution-as defined by delivering high-quality, high-value care, positive patient outcomes, and financial solvency-is inextricably tied to the culture within that organization. The ability to achieve and sustain alignment between its mission, values, and everyday practices defines a positive organizational culture. An institution that has a diminished organizational culture, reflected in the failure to consistently align management and clinical decisions and practices with its mission and values, will struggle.

Impact of family-centered tailoring of pediatric diabetes self-management resources.

Background: The American Diabetes Association recommends a family-centered approach that addresses each family's specific type 1 diabetes self-management barriers.

Objective: To assess an intervention that tailored delivery of self-management resources to families' specific self-management barriers.

Subjects: At two sites, 214 children 8-16 years old with type 1 diabetes and their parent(s) were randomized to receive tailored self-management resources (intervention, n = 106) or usual care (n = 108).

Measuring the quality of inpatient specialist consultation in the intensive care unit: Nursing and family experiences of communication.

Rationale: Critically ill patients in the intensive care unit (ICU) often require the care of specialist physicians for clinical or procedural expertise. The current state of communication between specialist physicians and families and nurses has not been explored.

Objectives: To document the receipt of communication by nurses and family members regarding consultations performed on their patient or loved one, and to quantify how this impacts their overall perceptions of the quality of specialty care.

A Web-Based Coping Intervention by and for Parents of Very Young Children With Type 1 Diabetes: User-Centered Design.

Background: Management of type 1 diabetes (T1D) among children aged <6 years is exceptionally challenging for parents and caregivers. Metabolic and psychosocial outcomes among very young children with T1D (YC-T1D) are tightly associated with their parents' ability to meet these challenges. There is scant research testing interventions targeting these issues and few resources to equip health care providers with feasible and effective coping strategies for these parents.

Facing obesity: Adapting the collaborative deliberation model to deal with a complex long-term problem.

Objective: Care communication about obesity needs to respond to the complex biopsychosocial processes that affect weight and health. The collaborative deliberation model conceptualizes interpersonal work that underpins empathic communication and shared decision-making. The goal of this study was to elucidate how primary care practitioners can use the model to achieve shared obesity assessment and care planning.

Provider-Focused Intervention to Promote Comprehensive Screening for Adolescent Idiopathic Scoliosis by Primary Care Pediatricians.

Screening can detect adolescent idiopathic scoliosis (AIS). The objective was to determine if computer-based simulation (CBS) and computerized clinical decision-support systems (CCDSS) would improve primary care providers' AIS screening exams as noted in their documentation. All participants received AIS screening CBS training.

Pediatric Psychologists' Career Satisfaction: 2015 Society of Pediatric Psychology Workforce Survey Results.

Unlabelled: Little is known about the career satisfaction of pediatric psychologists, who specialize in psychological research, teaching, and clinical service in the context of pediatric healthcare. As part of the larger Society of Pediatric Psychology Workforce Survey and in collaboration with the American Psychological Association Center for Workforce Studies, this study aimed to: (1) describe the career domains which pediatric psychologists perceive to be important and their satisfaction in each domain, and (2) compare satisfaction of pediatric psychologists across work settings, number of positions, appointment duration, professional roles, career stage, academic rank, and gender. Responses from 336 pediatric psychologists demonstrated high career satisfaction.

A Provider-Focused Intervention to Promote Optimal Care of Pediatric Patients With Suspected Elbow Fracture.

Objective: Emergency department (ED) and urgent care (UC) physicians' accurate assessment of the neurovascular and musculoskeletal (NV/MSK) examination in pediatric patients with suspected elbow fracture is crucial to the early recognition of neurovascular compromise. Our objective was to determine the impact of computer-based simulation (CBS) and computerized clinical decision support systems (CCDSS) on ED and UC physicians' assessment of the NV/MSK examination of pediatric patients with elbow fracture as noted in their documentation.

Methods: All ED UC physician participants received CBS training about management of pediatric patients with suspected elbow fracture.

Association between CYP2C19 extensive metabolizer phenotype and childhood anti-reflux surgery following failed proton pump inhibitor medication treatment.

Unlabelled: When pediatric gastroesophageal reflux disease (GERD) that is refractory to proton pump inhibitor (PPI) medication treatment is identified in clinical practice and anti-reflux surgery (ARS) is being considered, genetic factors related to PPI metabolism by the CYP2C19 enzyme are currently not part of the clinical decision-making process. Our objective was to test the hypothesis that the distribution of the extensive metabolizer (EM) phenotypes among children undergoing ARS after failing PPI therapy would differ compared to controls (children with no history of ARS). We conducted a case-control study between children across the Nemours Health System from 2000 to 2014 who received ARS after failing PPI therapy and a control group comprised of healthy children.

Association Between CYP2C19*17 Alleles and pH Probe Testing Outcomes in Children With Symptomatic Gastroesophageal Reflux.

Esophageal pH monitoring remains a primary diagnostic tool for detecting gastroesophageal reflux disease (GERD). GERD that is refractory to proton pump inhibitor (PPI) medications may be related to CYP2C19 variants. Current PPI dosing practices in children do not take into account CYP2C19 allelic variants, which may lead to underdosing and subsequently to a misperception of PPI therapy failure.

Design and baseline data from a PCORI-funded randomized controlled trial of family-centered tailoring of diabetes self-management resources.

Unlabelled: This article describes the methodology, recruitment, participant characteristics, and sustained, intensive stakeholder engagement for Project ACE (Achieving control, Connecting resources, Empowering families). Project ACE is a randomized controlled trial of children and youth ages 8-16 with type 1 diabetes evaluating the impact of tailored self-management resources on hemoglobin A1c (A1c) and quality of life (QOL). Despite strong evidence that controlling A1c reduces long-term complications, <25% of US youth with type 1 diabetes meet A1c targets.

Electronic health record as a research tool: Frequency of exposure to targeted clinical problems and health care providers' clinical proficiency.

Objectives: The Electronic Health Record (EHR) could provide insight into possible decay in health care providers' (HCP) clinical knowledge and cognitive performance. Analyses of the contributions of variables such as frequency of exposure to targeted clinical problems could inform the development and testing of appropriate individualized interventions to mitigate these threats to quality and safety of care.

Materials/methods: Nine targeted clinical problems (TCP) were selected for further study, and de-identified, aggregated study data were obtained for one calendar year.

A cognitive approach for design of a multimedia informed consent video and website in pediatric research.

Objective: Poor participant comprehension of research procedures following the conventional face-to-face consent process for biomedical research is common. We describe the development of a multimedia informed consent video and website that incorporates cognitive strategies to enhance comprehension of study related material directed to parents and adolescents.

Materials And Methods: A multidisciplinary team was assembled for development of the video and website that included human subjects professionals; psychologist researchers; institutional video and web developers; bioinformaticians and programmers; and parent and adolescent stakeholders.

The Brief Early Childhood Screening Assessment: Preliminary Validity in Pediatric Primary Care.

Objective: Brief, well-validated instruments are needed to facilitate screening for early childhood behavioral and emotional problems (BEPs). The objectives of this study were to empirically reduce the length of the Early Childhood Screening Assessment (ECSA) and to assess the validity and reliability of this shorter tool.

Methods: Using caregiver ECSA responses for 2467 children aged 36 to 60 months seen in primary care, individual ECSA items were ranked on a scale ranging from "absolutely retain" to "absolutely delete.

Clinician Perspectives on an Electronic Portal to Improve Communication with Patients and Families in the Intensive Care Unit.

Rationale: Communication in the intensive care unit (ICU) often falls short of patient and family needs, putting them at risk for significant physical and emotional harm. As electronic patient portals rapidly evolve, one designed specifically for the ICU might potentially enhance communication among patients, family members, and clinicians; however, the views of frontline ICU staff on such technology are unknown.

Objectives: To identify clinician perspectives on the current state of communication among patients, families, and clinicians in the ICU, and assess their views on whether and how an electronic portal may address existing communication deficits and improve care.

Collaborative Care: a Pilot Study of a Child Psychiatry Outpatient Consultation Model for Primary Care Providers.

A Child Psychiatry Consultation Model (CPCM) offering primary care providers (PCPs) expedited access to outpatient child psychiatric consultation regarding management in primary care would allow more children to access mental health services. Yet, little is known about outpatient CPCMs. This pilot study describes an outpatient CPCM for 22 PCPs in a large Northeast Florida county.