Effects of Family Caregiver-Nurse Communication on Family Management and Family Caregiver Uncertainty Regarding the Care of Children With Long-Term Ventilator Dependence.

Nurses caring for hospitalized children with long-term ventilator dependence (LTVD) assess family management capability and teach new skills through communication with family caregivers. This theoretically-based quantitative, descriptive study aimed to determine the communication behaviors associated with family caregiver uncertainty and management of the child with LTVD's care after discharge. One hundred families and 48 nurses enrolled.

Clinician Perspectives on Continuous Monitor Use in a Children's Hospital: A Qualitative Study.

Background And Objectives: Variation in continuous cardiopulmonary monitor (cCPM) use across children's hospitals suggests preference-based use. We sought to understand how clinical providers make decisions to use cCPMs.

Methods: We conducted a qualitative study using semi-structed interviews with clinicians (nurses, respiratory therapists [RTs], and resident and attending physicians) from 2 hospital medicine units at a children's hospital.

Usability Testing of Situation Awareness Clinical Decision Support in the Intensive Care Unit.

Objective:  Our objective was to evaluate the usability of an automated clinical decision support (CDS) tool previously implemented in the pediatric intensive care unit (PICU) to promote shared situation awareness among the medical team to prevent serious safety events within children's hospitals.

Methods:  We conducted a mixed-methods usability evaluation of a CDS tool in a PICU at a large, urban, quaternary, free-standing children's hospital in the Midwest. Quantitative assessment was done using the system usability scale (SUS), while qualitative assessment involved think-aloud usability testing.

Improved recognition of lung function decline as signal of cystic fibrosis pulmonary exacerbation: a Cystic Fibrosis Learning Network Innovation Laboratory quality improvement initiative.

Introduction: Cystic fibrosis (CF) is a systemic autosomal recessive condition characterised by progressive lung disease. CF pulmonary exacerbations (PEx) are episodes of worsening respiratory status, and frequent PEx are a risk factor for accelerated lung function decline, yet many people with CF (PwCF) go untreated at the time of decline. The goal of this quality improvement (QI) initiative was to improve recognition, treatment and follow-up of PEx in PwCF.

Measurement of Ambulatory Medication Errors in Children: A Scoping Review.

Background And Objectives: Children use most medications in the ambulatory setting where errors are infrequently intercepted. There is currently no established measure set for ambulatory pediatric medication errors. We have sought to identify the range of existing measures of ambulatory pediatric medication errors, describe the data sources for error measurement, and describe their reliability.

The Cystic Fibrosis Learning Network: A mixed methods evaluation of program goals, attributes, and impact.

Introduction: The Cystic Fibrosis (CF) Foundation sponsored the design, pilot testing, and implementation of the CF Learning Network (CFLN) to explore how the Foundation's Care Center Network (CCN) could become a learning health system. Six years after the design, the Foundation commissioned a formative mixed methods evaluation of the CFLN to assess: CFLN participants' understanding of program goals, attributes, and perceptions of current and future impact.

Methods: We performed semi-structured interviews with CFLN participants to identify perceived goals, attributes, and impact of the network.

Patient Preferences in Diagnostic Imaging: A Scoping Review.

Background: As new diagnostic imaging technologies are adopted, decisions surrounding diagnostic imaging become increasingly complex. As such, understanding patient preferences in imaging decision making is imperative.

Objectives: We aimed to review quantitative patient preference studies in imaging-related decision making, including characteristics of the literature and the quality of the evidence.

Caregiver Quality of Life During Pediatric Influenza-Like Illness: A Cross-Sectional Study During the COVID-19 Pandemic.

The objective of this study was to quantify the quality of life (QoL) of caregivers with children with influenza-like illnesses (ILI) and to identify factors associated with worse QoL. This was a cross-sectional cohort study of caregivers in a pediatric emergency department with previously healthy young children with ILI. The primary outcome was caregiver QoL.

Establishing a Cystic Fibrosis Learning Network: Interventions to promote collaboration and data-driven improvement at scale.

Introduction: A learning health network is a type of learning health system in which stakeholders use network organization to improve health and health care. Building on existing resources in the cystic fibrosis (CF) community, the Cystic Fibrosis Learning Network (CFLN) was designed to improve medical outcomes and quality of life through an intentional focus on achieving reliable evidence-based chronic care delivery and creating a system for data-driven collaborative learning.

Methods: We describe the development and growth of the CFLN considering six domains of a Network Maturity Grid: system leadership; governance and policy management; quality improvement (QI); engagement and community building; data and analytics; and research.

Improving the Quality of Written Discharge Instructions: A Multisite Collaborative Project.

Background And Objectives: Written discharge instructions help to bridge hospital-to-home transitions for patients and families, though substantial variation in discharge instruction quality exists. We aimed to assess the association between participation in an Institute for Healthcare Improvement Virtual Breakthrough Series collaborative and the quality of pediatric written discharge instructions across 8 US hospitals.

Methods: We conducted a multicenter, interrupted time-series analysis of a medical records-based quality measure focused on written discharge instruction content (0-100 scale, higher scores reflect better quality).

Prevalence of self-medication and associated factors in adolescents aged 18-19 years: the 1997/1998 cohort in São Luís-MA, Brazil.

This article aims to assess the prevalence and factors associated with self-medication in adolescents. Cross-sectional study, nested in cohort, with 2,515 adolescents aged 18-19 years born in São Luís-MA. The use of medication in the last 15 days without a medical prescription or by a qualified professional was considered self-medication.

Improving Home Ventilator Alarm Use Among Children Requiring Chronic Mechanical Ventilation.

Background And Objectives: Children requiring long-term mechanical ventilation are at high risk of mortality. Setting ventilator alarms may improve safety, but best practices for setting ventilator alarms have not been established. Our objective was to increase the mean proportion of critical ventilator alarms set for those children requiring chronic mechanical ventilation followed in our pulmonary clinic from 63% to >90%.

Cystic fibrosis learning network telehealth innovation lab during the COVID-19 pandemic: a success QI story for interdisciplinary care and agenda setting.

Introduction: The Cystic Fibrosis Foundation chronic care guidelines recommend monitoring clinical status of a patient with cystic fibrosis (CF) through quarterly interdisciplinary visits. At the beginning of the COVID-19 pandemic, the Cystic Fibrosis Learning Network (CFLN) designed and initiated a telehealth (TH) innovation lab (TH ILab) to support transition from the classic CF care model of quarterly in-person office visits to a care model that included TH.

Aim: The specific aims of the TH ILab were to increase the percentage of virtual visits with interdisciplinary care (IDC) from 60% to 85% and increase the percentage of virtual visits in which patients and families participated in shared agenda setting (AS) from 52% to 85% by 31 December 2020.

Development of a motivation-based tool to facilitate individualized self-management interventions for adolescents with asthma.

Objective: To develop a questionnaire for segmenting adolescents with asthma into archetypes based on their motivations for individualized self-management interventions.

Methods: A prospective observational study using segmentation methodology. First, adolescents created photo diaries followed by in-person semi-structured interviews to develop a pool of candidate items for identifying and describing archetypes.

A Content Analysis of Emergency Department Discharge Instructions for Acute Pediatric Febrile Illnesses: The Current State and Opportunities for Improvement.

Quality emergency department (ED) discharge communication is critical to understanding of disease progression, home management, and return instructions. Addressing social aspects of disease burden are important to improving satisfaction and healthcare utilization. The objective of this study was to understand the extent to which written ED discharge instructions address multifaceted aspects of disease to meet the comprehensive needs of families with common childhood illnesses.

Impact of guideline-recommended dietitian assessments on weight gain in infants with cystic fibrosis.

Background: Cystic fibrosis (CF)-specialized nutrition care strives to meet normal infant growth, but the relationship of dietitian assessments to weight outcomes is unknown. We characterize nutrition management for inadequate weight gain and assess association of dietitian assessments and center-level weight-for-age Z-scores (WAZ).

Methods: We used encounter data from 226 infants across 28 US CF Centers from the Baby Observational Nutritional study between January 2012 through December 2017.

Assessment of a Situation Awareness Quality Improvement Intervention to Reduce Cardiac Arrests in the PICU.

Objectives: To use improved situation awareness to decrease cardiopulmonary resuscitation events by 25% over 18 months and demonstrate process and outcome sustainability.

Design: Structured quality improvement initiative.

Setting: Single-center, 35-bed quaternary-care PICU.

Engaging Caregivers and Providers of Children With Sickle Cell Anemia in Shared Decision Making for Hydroxyurea: Protocol for a Multicenter Randomized Controlled Trial.

Background: Sickle cell anemia (SCA) is a genetic blood disorder that puts children at a risk of serious medical complications, early morbidity and mortality, and high health care utilization. Until recently, hydroxyurea was the only disease-modifying treatment for this life-threatening disease and has remained the only option for children younger than 5 years. Evidence-based guidelines recommend using a shared decision-making (SDM) approach for offering hydroxyurea to children with SCA (HbSS or HbS/β0 thalassemia) aged as early as 9 months.

Mobile health use predicts self-efficacy and self-management in adolescents with sickle cell disease.

Sickle cell disease (SCD) is associated with significant health challenges that often worsen during adolescence. Living with SCD requires a substantial amount of self-management and mobile health (mHealth) holds considerable promise for assessing and changing behaviors to improve health outcomes. We integrated a mobile app as an adjunct to a group intervention (SCThrive) and hypothesized that more engagement with the mHealth app would increase self-management and self-efficacy for adolescents and young adults (AYA) with SCD.