Improving pediatric Inflammatory Bowel Disease (IBD) follow-up.

Standardization of Inflammatory Bowel Disease (IBD) care through participation in the ImproveCareNow (ICN) Network has improved outcomes for pediatric patients with IBD, but under the current care model, our improvements have plateaued. Current ICN model care guidelines recommend health supervision visits every six months. We identified a gap in our practice's ability to ensure either a routine six month follow-up or a rapid follow-up after a disease flare, and a significant number of patients with active disease status during a six month period lacked timely reassessment after interventions or medication changes.

Disease control and health-related quality of life in juvenile idiopathic arthritis.

Objective: To examine variability in health-related quality of life (HRQOL) in children with juvenile idiopathic arthritis (JIA) experiencing no or minimal clinical symptoms, and in a subgroup with polyarticular JIA treated with biologic agents for 12 months.

Methods: We defined 3 samples using a database of patients ages 2-18 years with JIA (n = 524; patient visits [PV] = 2,354): visits (PV = 2,155) with no or minimal clinical symptoms on at least 1 of 4 measures (active joint count, pain, physician global disease rating, Childhood Health Assessment Questionnaire); visits (PV = 941) with no or minimal symptoms on all 4 measures; and children (n = 31) with polyarticular JIA treated with biologic agents for 12 months. HRQOL was measured using the Pediatric Quality of Life Inventory (PedsQL) and the percentage of patients with suboptimal HRQOL was determined.

Child behavior and parent management strategies at mealtimes in families with a school-age child with cystic fibrosis.

Parent and child mealtime behaviors in school-age children with cystic fibrosis (CF; n = 28) and children without CF (n = 28) were examined during dinner meals by using multivariate analysis of variance. Parents of children with CF were found to differ from comparison parents in the frequency and rate of child management strategies. No differences were found in child behaviors.

Parent and child mealtime behavior in families of children with cystic fibrosis.

Objectives: We investigated the hypothesis that children with cystic fibrosis (CF) and their parents would show more maladaptive behaviors during dinner than children without CF and their parents.

Study Design: Children with CF (n = 32) and their parents were compared with 29 children without CF and their parents on the rate and frequency of parent-child behaviors during a typical dinner in the families' homes by using multivariate analyses of variance.

Results: When the rate of behavior, controlling for meal length, was examined, no differences were found between groups.

Sleep and daytime behavior in children with obstructive sleep apnea and behavioral sleep disorders.

Objective: The purpose of this study was: 1) to examine both bedtime sleep behaviors and daytime behaviors associated with daytime sleepiness in a group of children with a primary medical sleep disorder (obstructive sleep apnea syndrome [OSAS]) compared with a group of children with a primary behavioral sleep disorder (BSD) (limit setting sleep disorder or sleep onset association disorder); and 2) to investigate the impact of a comorbid BSD on sleep and daytime behavioral consequences of OSAS.

Methods: Children referred to a pediatric sleep disorders clinic during a 3-year period with a primary diagnosis of either polysomnographically-confirmed OSAS (n = 100) or a BSD (n = 52) were compared on several parent report measures assessing the following domains: symptoms of sleep disordered breathing, other sleep behaviors (primarily parasomnias), bedtime behaviors, and externalizing daytime behavior problems. The OSAS sample was then divided into a pure OSAS group (n = 78) and an OSAS plus a behavioral sleep diagnosis group (n = 22) based on the presence or absence of delayed sleep onset and/or prolonged nightwakings and compared on the parent-report symptom domains.