Building a regional pediatric asthma learning health system in support of optimal, equitable outcomes.

Introduction: Asthma is characterized by preventable morbidity, cost, and inequity. We sought to build an Asthma Learning Health System (ALHS) to coordinate regional pediatric asthma improvement activities.

Methods: We generated quantitative and qualitative insights pertinent to a better, more equitable care delivery system.

Education-related needs for children with cystic fibrosis: Perspectives of US pediatric care teams.

Objective: Patients with cystic fibrosis (CF) often bring education-related concerns to their medical teams. Concerns around the ability for CF care teams to identify and address these concerns exist. We sought to describe CF care team perceptions of (1) patient and family education-related needs, (2) how these needs are identified, documented and addressed, and (3) education-related resource gaps.

Longitudinal mental health trends in cystic fibrosis.

Background: Mental health screening in accordance with consensus guidelines became routine clinical practice in our cystic fibrosis (CF) Center in 2015. We hypothesized improvement in anxiety and depression symptoms over time and associations between elevated screening scores and disease severity. We aimed to observe the impact of the COVID-19 pandemic and modulator use on mental health symptoms.

Body composition and functional correlates of CF youth experiencing pulmonary exacerbation and recovery.

Background: Youth with cystic fibrosis (CF) and pulmonary exacerbation (PEx) often experience weight loss, then rapid weight gain. Little is known about body composition and its relationship to functional outcomes during this critical period.

Methods: Twenty CF youth experiencing PEx were assessed on the day following admission and 7-17 days later at discharge for body mass index (BMI), fat mass index (FMI), lean mass index (LMI), skeletal muscle mass index (SMMI), and functional measures: percent predicted forced expiratory volume in 1 second (FEV1) (ppFEV1), maximal inspiratory and expiratory pressures (MIPs and MEPs), and handgrip strength (HGS).

Longitudinal Assessment of Educational Risk for K-12 Students with Cystic Fibrosis.

Objectives: To assess the use of services provided by a cystic fibrosis (CF) center school specialist and evaluate relationships among student educational risk scores, family concerns for school engagement and performance, and disease severity.

Study Design: This was a retrospective review of medical records for 126 children with CF in grades K-12 who were screened for educational risk or used school intervention services during the 2017- 020 school years. Regression analyses were performed to identify and quantify predictors of educational risk, family concern for school performance and ability to advocate, and use of school specialist services.

Assessment of treatment burden and complexity in cystic fibrosis: A quality improvement project.

Background: Treatment regimens for cystic fibrosis (CF) continue to evolve and grow in complexity. Treatment regimen burden, and associated sequelae, are incompletely understood.

Objective: Quality improvement (QI) methods were used to investigate treatment burden of CF care, family and care team partnerships, and potential interventions to reduce burden.

Sleep disturbance and sleep insufficiency in primary caregivers and their children with cystic fibrosis.

Background: Chronically ill children and their parents are at risk for sleep disorders and associated morbidity. Sleep disturbance prevalence and the relationships between parent and child sleep among children with CF are not well defined. Clarifying the presence and impact of sleep disturbances among pediatric CF patients and their parents could lead to improved health in this population.

A Pilot Study of Mindfulness-Based Cognitive Therapy to Improve Well-Being for Health Professionals Providing Chronic Disease Care.

Objective: To assess the efficacy of mindfulness-based cognitive therapy delivered onsite during work hours in reducing stress and improving well-being in an interdisciplinary chronic care health care team.

Study Design: A longitudinal, mixed methods, observational pilot study using a survey created from validated assessment tools to measure effectiveness of training. Surveys were completed before training, and 1 and 15 months after training.

Assessing and responding to stress related to pulmonary function testing in cystic fibrosis through quality improvement.

Background: Pulmonary function tests (PFTs) are performed routinely to evaluate lung function in patients with cystic fibrosis (CF). Staff at the Cincinnati Children's Hospital Medical Center CF Center observed stress in patients before PFTs. An interdisciplinary quality improvement (QI) team was assembled to address this clinical issue.

Integration of the Safe Environment for Every Kid (SEEK) Model Across Primary Care Settings.

This project sought to assess the generalizability, barriers, and facilitators of implementing the Safe Environment for Every Kid (SEEK) model for addressing psychosocial risk factors for maltreatment across multiple primary care settings, including a pediatric practice, federally qualified health center, and family medicine practice. The SEEK model includes screening caregivers for psychosocial risk factors at well-child visits age 0 to 5 years, brief intervention incorporating principles of motivational interviewing to engage caregivers, and referral to treatment. All practices successfully implemented SEEK, with screening completion rates from 75% to 93% and brief intervention rates from 61% to 81%.

The Telehealth Enhancement of Adherence to Medication (TEAM) in pediatric IBD trial: Design and methodology.

Medication nonadherence is a significant health care issue requiring regular behavioral treatment. Lack of sufficient health care resources and patient/family time commitment for weekly treatment are primary barriers to receiving appropriate self-management support. We describe the methodology of the Telehealth Enhancement of Adherence to Medication (TEAM) trial for medication nonadherence in pediatric inflammatory bowel disease (IBD).

The clinical utility of health-related quality of life screening in a pediatric inflammatory bowel disease clinic.

Background: Adjusting to symptom flares, treatment regimens, and side effects places youth with inflammatory bowel disease (IBD) at increased risk for emotional and behavioral problems and adverse disease outcomes. Implementation of psychosocial screening into clinical practice remains a challenge. This study examines the clinical utility of health-related quality of life (HRQOL) screening in predicting disease outcome and healthcare utilization.

Assessing psychosocial risk in pediatric inflammatory bowel disease: validation of the Psychosocial Assessment Tool 2.0_General.

Aim: The aim of this study was to present the preliminary psychometric properties of the Psychosocial Assessment Tool 2.0_General (PAT2.0_GEN), a brief screener for psychosocial risk in families of children with inflammatory bowel disease (IBD).

Telehealth behavioral treatment for medication nonadherence: a pilot and feasibility study.

Objective: To evaluate an individually tailored multicomponent nonadherence treatment protocol using a telehealth delivery approach in adolescents with inflammatory bowel disease.

Methods: Nine participants, age 13.71±1.

Behavioral functioning and treatment adherence in pediatric eosinophilic gastrointestinal disorders.

Objective:  To examine behavioral predictors of treatment adherence in patients with eosinophilic gastrointestinal disorders (EGID).

Methods:   Participants were 96 patients 2.5-18 yr of age with eosinophilic esophagitis or eosinophilic gastroenteritis and their caregivers (mother, father).

Treatment adherence in pediatric eosinophilic gastrointestinal disorders.

Objective: Examine treatment adherence rates in pediatric eosinophilic gastrointestinal disorders (EGID).

Methods: Participants were children aged 2.5-18 years with eosinophilic esophagitis or eosinophilic gastroenteritis (EGE) and their caregivers.

Individually tailored treatment of medication nonadherence.

Objective: Nonadherence is a significant health care issue in pediatric inflammatory bowel disease (IBD) that requires intervention to improve outcomes. This pilot randomized controlled trial was designed to evaluate the feasibility, acceptability, and preliminary efficacy of an individually tailored behavioral treatment for nonadherence in adolescents with IBD.

Patients And Methods: Fourteen adolescents ages 14.