School Perceptions and Attendance for Children With Medical Complexity During COVID-19 Over Time.

Background: Disparities in school attendance exist for children with medical complexity (CMC) due to COVID-19. Longitudinal changes in family-reported school safety perceptions and predictors of full-time, in-person school attendance are unknown.

Methods: This was a prospective, longitudinal cohort study with 3 survey waves (June 2021-June 2022) among English- and Spanish-speaking families of CMC aged 5 to 17 years and pre-pandemic school attendance.

Developing a Sustainable Care Delivery Payment Model for Children With Medical Complexity.

Children with medical complexity (CMC) are a small but growing population representing <1% of all children while accounting for >30% of childhood health care expenditure. Complex care is a relatively new discipline that has emerged with goals of improving CMC care, optimizing CMC family function, and reducing health care costs. The provision of care coordination services is a major function of most complex care programs.

Barriers to and facilitators of a just-in-time adaptive intervention for respiratory illness in cerebral palsy: a qualitative study.

Objective: To understand caregiver, healthcare professional and national expert perspectives on implementation of a just-in-time adaptive intervention, RE-PACT (Respiratory Exacerbation-Plans for Action and Care Transitions) to prevent respiratory crises in severe cerebral palsy.

Design: Qualitative research study.

Setting: Paediatric complex care programmes at two academic medical institutions.

School Attendance Decisions for Children With Medical Complexity During COVID-19.

Objective: School attendance by children with medical complexity (CMC) may be influenced by parent perceptions of their child's risk for coronavirus disease 2019 (COVID-19). The authors of this study aimed to quantify in-person school attendance and identify attendance predictors.

Methods: From June to August 2021, surveys were collected from English- and Spanish-speaking parents of children aged 5 to 17 years with ≥1 complex chronic condition who received care at an academic tertiary children's hospital in the Midwestern United States and who attended school prepandemic.

What makes a home? Designing home personas to represent the homes of families caring for children with medical complexity.

Personas are widely recognized as valuable design tools for communicating dimensions of individuals, yet they often lack critical contextual factors. For those people managing chronic health conditions, the home is a critical context of their patient work system (PWS). We propose the development of 'home personas' to convey essential aspects of the home context to those tasked with designing technologies and interventions to fit it.

In-Home COVID-19 Testing for Children With Medical Complexity: Feasibility and Association With School Attendance and Safety Perceptions.

The REstarting Safe Education and Testing program for children with medical complexity was implemented in May 2021 at the University of Wisconsin to evaluate the feasibility of in-home rapid antigen COVID-19 testing among neurocognitively affected children. Parents or guardians administered BinaxNOW rapid antigen self-tests twice weekly for three months and changed to symptom and exposure testing or continued surveillance. In-home testing was feasible: nearly all (92.

COVID-19 Vaccination Intentions for Children With Medical Complexity.

Objectives: The chronic conditions and functional limitations experienced by children with medical complexity (CMC) place them at disproportionate risk for COVID-19 transmission and poor outcomes. To promote robust vaccination uptake, specific constructs associated with vaccine hesitancy must be understood. Our objective was to describe demographic, clinical, and vaccine perception variables associated with CMC parents' intention to vaccinate their child against COVID-19.

Feasibility Testing of Tubes@HOME: A Mobile Application to Support Family-Delivered Enteral Care.

Background: Assistance from medical devices is common for children with medical complexity (CMC) but introduces caregiving challenges. We tested the feasibility of "Tubes@HOME," a mobile application supporting CMC family-delivered care using enteral care as a model.

Methods: Caregivers of CMC with enteral tubes participated in a 30-day feasibility study of Tubes@HOME November 2020 through January 2021.

Caregiving and Confidence to Avoid Hospitalization for Children with Medical Complexity.

Objective: To test associations between parent-reported confidence to avoid hospitalization and caregiving strain, activation, and health-related quality of life (HRQOL).

Study Design: In this prospective cohort study, enrolled parents of children with medical complexity (n = 75) from 3 complex care programs received text messages (at random times every 2 weeks for 3 months) asking them to rate their confidence to avoid hospitalization in the next month. Low confidence, as measured on a 10-point Likert scale (1 = not confident; 10 = fully confident), was defined as a mean rating <5.

Priorities for Safer In-Person School for Children With Medical Complexity During COVID-19.

Objectives: To establish statewide consensus priorities for safer in-person school for children with medical complexity (CMC) during the coronavirus disease 2019 (COVID-19) pandemic using a rapid, replicable, and transparent priority-setting method.

Methods: We adapted the Child Health and Nutrition Research Initiative Method, which allows for crowdsourcing ideas from diverse stakeholders and engages technical experts in prioritizing these ideas using predefined scoring criteria. Crowdsourcing surveys solicited ideas from CMC families, school staff, clinicians and administrators through statewide distribution groups/listservs using the prompt: "It is safe for children with complex health issues and those around them (families, teachers, classmates, etc.

Hemosuccus Pancreaticus Following Acute Pancreatitis in a 12-years-old Boy Secondary to Pancreatic Pseudoaneurysm Treated With Endovascular Coil Embolization.

Hemosuccus pancreaticus is a very rare cause of upper gastrointestinal bleeding in children. It is defined as bleeding from the pancreatic or peripancreatic vessels into the main pancreatic duct and may be life-threatening. We present the case of a 12-year-old boy with hematemesis and severe anemia that developed following an episode of acute pancreatitis.

Complex Care Program Enrollment and Change in ED and Hospital Visits from Medical Device Complications.

Introduction: Medical device-related complications often lead to emergency department (ED) visits and hospitalizations for children with medical complexity (CMC), and pediatric complex care programs may be one way to decrease unnecessary encounters.

Methods: A retrospective cohort study comparing ED and inpatient encounters due to device complications of 2 cohorts of CMC at a single children's hospital during 2014-2016; 99 enrolled in a complex care program and 244 in a propensity-matched comparison group. Structured chart reviews identified ED and inpatient encounters due to device complications.

Medical Device Workarounds in Providing Care for Children With Medical Complexity in the Home.

Objectives: Children with medical complexity (CMC) are commonly assisted by medical devices, which family caregivers are responsible for managing and troubleshooting in the home. Optimizing device use by maximizing the benefits and minimizing the complications is a critical goal for CMC but is relatively unexplored. In this study, we sought to identify and describe workarounds families have developed to optimize medical device use for their needs.

Linking Parent Confidence and Hospitalization through Mobile Health: A Multisite Pilot Study.

Objective: To evaluate the associations between parent confidence in avoiding hospitalization and subsequent hospitalization in children with medical complexity (CMC); and feasibility/acceptability of a texting platform, Assessing Confidence at Times of Increased Vulnerability (ACTIV), to collect repeated measures of parent confidence.

Study Design: This prospective cohort study purposively sampled parent-child dyads (n = 75) in 1 of 3 complex care programs for demographic diversity to pilot test ACTIV for 3 months. At random days/times every 2 weeks, parents received text messages asking them to rate confidence in their child avoiding hospitalization in the next month, from 1 (not confident) to 10 (fully confident).

Priorities and Outcomes for Youth-Adult Transitions in Hospital Care: Perspectives of Inpatient Clinical Leaders at US Children's Hospitals.

Objectives: Adults with chronic conditions originating in childhood experience ongoing hospitalizations; however, efforts to guide youth-adult transitions rarely address transitioning to adult-oriented inpatient care. Our objectives were to identify perceptions of clinical leaders on important and feasible inpatient transition activities and outcomes, including when, how, and for whom inpatient transition processes are needed.

Methods: Clinical leaders at US children's hospitals were surveyed between January and July 2016.

Codesign and Usability Testing of a Mobile Application to Support Family-Delivered Enteral Tube Care.

Background: Enteral tubes are prevalent among children with medical complexity (CMC), and complications can lead to costly health care use. Our objective was to design and test the usability of a mobile application (app) to support family-delivered enteral tube care.

Methods: Human-centered design methods (affinity diagramming, persona development, and software development) were applied with family caregivers of CMC to develop a prototype.

Ambulatory quality, special health care needs, and emergency department or hospital use for US children.

Objective: This study examined family-reported ambulatory care quality and its association with emergency department and hospital utilization, and how these relationships differed across levels of medical complexity.

Data Sources: The 2006-2013 Medical Expenditure Panel Survey (MEPS).

Study Design: Secondary analysis of MEPS data.

Earlier Hospital Discharge With Prospectively Designated Discharge Time in the Electronic Health Record.

Background And Objectives: Hospital discharge requires multidisciplinary coordination. Insufficient coordination impacts patient flow, resource use, and postdischarge outcomes. Our objectives were to (1) implement a prospective, multidisciplinary discharge timing designation in the electronic health record (EHR) and (2) evaluate its association with discharge timing.

Transitioning from General Pediatric to Adult-Oriented Inpatient Care: National Survey of US Children's Hospitals.

Background: Hospital charges and lengths of stay may be greater when adults with chronic conditions are admitted to children's hospitals. Despite multiple efforts to improve pediatric-adult healthcare transitions, little guidance exists for transitioning inpatient care.

Objective: This study sought to characterize pediatricadult inpatient care transitions across general pediatric services at US children's hospitals.

Hospitalizations for Ambulatory Care-Sensitive Conditions among Children with Chronic and Complex Diseases.

Objective: To evaluate ambulatory-care sensitive (ACS) hospitalizations for children with noncomplex chronic diseases (NC-CD) and children with medical complexity (CMC), and identify associations with ambulatory care characteristics. Although ACS hospitalizations are potentially preventable in general populations, the specific ambulatory care predictors and influence of medical complexity on them is poorly understood.

Study Design: Retrospective cohort study of NC-CD and CMC hospitalizations at a children's hospital during 2007-2014, excluding labor/delivery and children over 21 years.

Strategies for improving family engagement during family-centered rounds.

Background: Family-centered rounds (FCR) are recommended as standard practice in the pediatric inpatient setting; however, limited data exist on best practices promoting family engagement during rounds.

Objective: To identify strategies to enhance family engagement during FCR using a recognized systems engineering approach.

Methods: In this qualitative study, stimulated recall interviews using video-recorded rounding sessions were conducted with participants representing the various stakeholders on rounds (15 parents/children and 22 healthcare team [HCT] members) from 4 inpatient services at a children's hospital in Wisconsin.