Free Online Decision Tools to Support Parents Making Decisions About Their Children's Chronic Health Condition: An Environmental Scan.

Background: Medical decisions parents make on their children's behalf can be challenging. Free online decision support tools are created to help parents faced with these decisions.

Objective: We used an environmental scan to identify free, online tools that support parents in making decisions about their children's chronic health condition.

Pulmonological issues.

Pediatric leukodystrophies are rare neurodegenerative diseases involving multiple systems. Each form has unique neurologic features but are characterized by encephalopathy with accompanying impairments evidenced in reflexes, muscle tone and movement control. Weakness of expiratory, inspiratory, and upper airway muscles may lead to impaired airway secretion clearance resulting in recurrent respiratory infections, dysphagia, sleep-disordered breathing, restrictive lung disease, and ultimately chronic respiratory insufficiency.

Barriers and Facilitators to the Implementation of Family-Centered Technology in Complex Care: Feasibility Study.

Background: Care coordination is challenging but crucial for children with medical complexity (CMC). Technology-based solutions are increasingly prevalent but little is known about how to successfully deploy them in the care of CMC.

Objective: The aim of this study was to assess the feasibility and acceptability of GoalKeeper (GK), an internet-based system for eliciting and monitoring family-centered goals for CMC, and to identify barriers and facilitators to implementation.

Intergenerational Decision Making: The Role of Family Relationships in Medical Decision Making.

A symposium held at the 42nd annual Society for Medical Decision Making conference on October 26, 2020, focused on intergenerational decision making. The symposium covered existing research and clinical experiences using formal presentations and moderated discussion and was attended by 43 people. Presentations focused on the roles of pediatric patients in decision making, caregiver decision making for a child with complex medical needs, caregiver involvement in advanced care planning, and the inclusion of spillover effects in economic evaluations.

Gastrostomy Tubes Placed in Children With Neurologic Impairment: Associated Morbidity and Mortality.

Background: Gastrostomy tube (G-tube) placement for children with neurologic impairment with dysphagia has been suggested for pneumonia prevention. However, prior studies demonstrated an association between G-tube placement and increased risk of pneumonia. We evaluate the association between timing of G-tube placement and death or severe pneumonia in children with neurologic impairment.

Parent Perspectives in Shared Decision-Making for Children With Medical Complexity.

Objective: Shared decision-making (SDM) may improve outcomes for children with medical complexity (CMC). CMC have lower rates of SDM than other children, but little is known about how to improve SDM for CMC. The objective of this study is to describe parent perspectives of SDM for CMC and identify opportunities to improve elements of SDM specific to this vulnerable population.

Health and Economic Outcomes of Posterior Spinal Fusion for Children With Neuromuscular Scoliosis.

Objectives: Neuromuscular scoliosis (NMS) can result in severe disability. Nonoperative management minimally slows scoliosis progression, but operative management with posterior spinal fusion (PSF) carries high risks of morbidity and mortality. In this study, we compare health and economic outcomes of PSF to nonoperative management for children with NMS to identify opportunities to improve care.

Pneumonia Prevention Strategies for Children With Neurologic Impairment.

Background: Children with neurologic impairment (NI) face high risk of recurrent severe pneumonia, with prevention strategies of unknown effectiveness. We evaluated the comparative effectiveness of secondary prevention strategies for severe pneumonia in children with NI.

Methods: We included children enrolled in California Children's Services between July 1, 2009, and June 30, 2014, with NI and 1 pneumonia hospitalization.

Trends in EMR for nonmalignant colorectal polyps in the United States.

Background And Aims: Although most large nonpedunculated colorectal lesions can be safely and efficaciously removed using EMR, the use of colectomy for benign colorectal lesions appears to be increasing. The reason(s) is unclear. We aimed to determine the use and adverse events of EMR in the United States.

Patients Prescribed Direct-Acting Oral Anticoagulants Have Low Risk of Postpolypectomy Complications.

Background & Aims: Use of direct-acting oral anticoagulants (DOACs) is increasing, but little is known about the associated risks in patients undergoing colonoscopy with polypectomy. We aimed to determine the risk of post-polypectomy complications in patients prescribed DOACs.

Methods: We performed a retrospective analysis using Optum's de-identified Clinformatics Data Mart Database (2003-2016) (a de-identified administrative database from a large national insurance provider) to identify adults who underwent colonoscopy with polypectomy or endoscopic mucosal resection (EMR) from January 1, 2011, through December 31, 2015.

Potential Impact of Initial Clinical Data on Adjustment of Pediatric Readmission Rates.

Objective: Comparison of readmission rates requires adjustment for case-mix (ie, differences in patient populations), but previously only claims data were available for this purpose. We examined whether incorporation of relatively readily available clinical data improves prediction of pediatric readmissions and thus might enhance case-mix adjustment.

Methods: We examined 30-day readmissions using claims and electronic health record data for patients ≤18 years and 29 days of age who were admitted to 3 children's hospitals from February 2011 to February 2014.

Well-Appearing Newborn With a Vesiculobullous Rash at Birth.

A term, appropriate-for-gestational-age, male infant born via normal spontaneous vaginal delivery presented at birth with a full-body erythematous, vesiculobullous rash. He was well-appearing with normal vital signs and hypoglycemia that quickly resolved. His father had a history of herpes labialis.

Shared Decision Making among Children with Medical Complexity: Results from a Population-Based Survey.

Objective: To compare the rates of shared decision making (SDM) reported by parents of children with medical complexity (CMC) with the rates of SDM reported by parents of noncomplex children with special health care needs (CSHCN).

Study Design: We examined the 2009-2010 National Survey of Children with Special Health Care Needs, a representative survey of 40 242 parents of CSHCN. CMC was defined as needing or using more medical care than usual, seeing 2 or more subspecialists, and positive response on at least 3 other items on the CSHCN screener.

Does Routine Imaging of Patients for Progression or Relapse Improve Survival in Rhabdomyosarcoma?

Background: Patients with rhabdomyosarcoma (RMS) who complete therapy typically undergo 4 years of surveillance imaging despite lack of evidence that this improves outcomes. We compared overall survival (OS) between patients in whom progression or relapse was detected by routine clinical evaluation or by imaging.

Procedure: Children with progressive or relapsed RMS treated at Texas Children's Hospital between 1992 and 2012 were identified and their records were reviewed.