Jennifer L. Butcher

Developmental outcomes of children with congenital diaphragmatic hernia: a multicenter prospective study.

PURPOSE To determine developmental outcomes and associated factors in patients with congenital diaphragmatic hernia (CDH) at 2 years of age. METHODS This is a multicenter prospective study of a CDH birth cohort. Clinical and socioeconomic data were collected. Bayley Scales of Infant Development (BSID-III) and Vineland Adaptive Behavior Scales (VABS-II) were performed at 2 years of age. RESULTS BSID-III and VABS-II assessments were completed on 48 and 49 children, respectively. The BSID-III mean cognitive, language, and motor scores were significantly below the norm mean with average scores of 93 ± 15, 95 ± 16, and 95 ± 11. Ten percent (5/47) scored more than 2 standard deviations below the norm on one or more domains. VABS-II scores were similar to BSID-III scores with mean communication, daily living skills, social, motor, adaptive behavior scores of 97 ± 14, 94 ± 16, 93 ± 13, 97 ± 10, and 94 ± 14. For the BSID-III, supplemental oxygen at 28 days, a prenatal diagnosis, need for extracorporeal membrane oxygenation (ECMO) and exclusive tube feeds at time of discharge were associated with lower scores. At 2 years of age, history of hospital readmission and need for tube feeds were associated with lower scores. Lower socioeconomic status correlated with lower developmental scores when adjusted for significant health factors. CONCLUSION CDH patients on average have lower developmental scores at 2 years of age compared to the norm. A need for ECMO, oxygen at 28 days of life, ongoing health issues and lower socioeconomic status are factors associated with developmental delays.

Behavioral and nutritional treatment for preschool-aged children with cystic fibrosis a randomized clinical trial

IMPORTANCE Evidence-based treatments that achieve optimal energy intake and improve growth in preschool-aged children with cystic fibrosis (CF) are a critical need. OBJECTIVE To test whether behavioral and nutritional treatment (intervention) was superior to an education and attention control treatment in increasing energy intake, weight z (WAZ) score, and height z (HAZ) score. DESIGN, SETTING, AND PARTICIPANTS This randomized clinical trial included 78 children aged 2 to 6 years (mean age, 3.8 years) with CF and pancreatic insufficiency (intervention, n = 36 and control, n = 42). The study was conducted at 7 CF centers between January 2006 and November 2012; all 78 participants who met intent-to-treat criteria completed through follow-up. INTERVENTIONS Behavioral intervention combined individualized nutritional counseling targeting increased energy intake and training in behavioral child management skills. The control arm provided education and served as a behavioral placebo controlling for attention and contact frequency. Both treatments were delivered in person or telehealth (via telephone). Sessions occurred weekly for 8 weeks then monthly for 4 months (6 months). Participants then returned to standard care for 1 year, with 12-month follow-up thereafter. MAIN OUTCOMES AND MEASURES Changes in energy intake and WAZ score were examined from pretreatment to posttreatment (6 months) and change in HAZ score was assessed pretreatment to follow-up (18 months). Covariates included sex, Pseudomonas aeruginosa status at baseline, and treatment modality (in person vs telehealth). RESULTS At baseline, mean (SD) energy intake was 1462 (329) kcals/d, WAZ score was -0.44 (0.81), and HAZ score was -0.55 (0.84). From pretreatment to posttreatment, the intervention increased daily energy intake by 485 calories vs 58 calories for the control group (adjusted difference, 431 calories; 95% CI, 282 to 581; P < .001) and increased the WAZ score by 0.12 units vs 0.06 for the control (adjusted difference, 0.09; 95% CI, -0.06 to 0.24; P = .25). From pretreatment to follow-up, the intervention increased the HAZ score by 0.09 units vs -0.02 for the control (adjusted difference, 0.14 units; 95% CI, 0.001 to 0.27; P = .049). Measured treatment integrity and credibility were high for both groups. CONCLUSIONS AND RELEVANCE Behavioral and nutritional intervention improved energy intake and HAZ score outcomes but not WAZ score outcomes. Our results provide evidence that behavioral and nutritional treatment may be efficacious as a nutritional intervention for preschoolers aged 2 to 6 years with CF and pancreatic insufficiency. TRIAL REGISTRATION clinicaltrials.gov Identifier:NCT00241969.

Impact of Psychiatric Diagnoses on Hospital Length of Stay in Children With Sickle Cell Anemia

Patients with sickle cell anemia (SCA) experience a broad range of psychiatric disorders, placing them at risk for more complicated and longer hospitalizations for vaso‐occlusive crises (VOC). The current study examined the frequency of psychiatric disorders in SCA patients (ages birth to 20 years) admitted for VOC in a nationally representative sample and the association between psychiatric disorders and hospital length of stay (LOS).

Developmental Care in North American Pediatric Cardiac Intensive Care Units: Survey of Current Practices.

Background:Developmental care practices across pediatric cardiac intensive care units (CICUs) have not previously been described. Purpose:To characterize current developmental care practices in North American CICUs. Methods:A 47-item online survey of developmental care practices was developed and sent to 35 dedicated pediatric CICUs. Staff members who were knowledgeable about developmental care practices in the CICU completed the survey. Findings/Results:Completed surveys were received from 28 CICUs (80% response rate). Eighty-nine percent reported targeted efforts to promote developmental care, but only 50% and 43% reported having a developmental care committee and holding developmental rounds, respectively. Many CICUs provide darkness for sleep (86%) and indirect lighting for alertness (71%), but fewer provide low levels of sound (43%), television restrictions (43%), or designated quiet times (21%). Attempts to cluster care (82%) and support self-soothing during difficult procedures (86%) were commonly reported, but parental involvement in these activities is not consistently encouraged. All CICUs engage in infant holding, but practices vary on the basis of medical status and only 46% have formal holding policies. Implications for Practice:Implementation of developmental care in the CICU requires a well-planned process to ensure successful adoption of practice changes, beginning with a strong commitment from leadership and a focus on staff education, family support, value of parents as the primary caregivers, and policies to increase consistency of practice. Implications for Research:Future studies should examine the short- and long-term effects of developmental care practices on infants born with congenital heart disease and cared for in a pediatric CICU.

Direct Observation of Respiratory Treatments in Cystic Fibrosis: Parent–Child Interactions Relate to Medical Regimen Adherence

OBJECTIVE Use a standardized system to code parent-child interactions during respiratory treatments for cystic fibrosis (CF) and analyze relations between behaviors during treatments and medical regimen adherence. METHODS A total of 15 families (53% girls; M age = 8.9 years; SD = 1.8) had three respiratory treatments recorded in the home environment and coded. Families provided six 24-hr recalls of child medical regimen activities, and electronic airway clearance time was recorded over 3 months to measure medical regimen adherence. RESULTS Parent positive attention, instructions, and avoidance of negative statements were significantly related to child cooperation during respiratory treatments. Parental presence, positive attention, instructions, and child cooperation during treatments were related to higher respiratory adherence rates. CONCLUSIONS Direct observation methodology has led to effective nutritional adherence intervention for children with CF. These preliminary data demonstrate that an observational method could also be used to develop interventions to promote respiratory medication adherence.

Single-session biofeedback-assisted relaxation training in children with sickle cell disease.

Sickle cell disease (SCD) pain remains difficult to manage. This pilot study evaluated single-session biofeedback-assisted relaxation training (BART) for SCD pain in children. Ten participants (mean=12.1 y) completed a 1-hour BART session using thermal biofeedback and home practice. Participants demonstrated changes in peripheral body temperature after the training session (d=1.08) and at 6-week follow-up (d=0.97) relative to their baseline visit. Reductions in patient-reported pain frequency were found after completing BART. Health-related quality of life and pain-related disability improvements were observed; however, effect sizes were small to minimal. Single-session BART may be a promising, complementary approach to medical management of pediatric SCD pain.

Supporting Development in Children With Congenital Heart Disease

Children with congenital heart disease (CHD) are exceptionally resilient. After extensive surgeries and hospitalizations, they typically go on to live full, meaningful lives. However, some children with CHD experience developmental and learning differences and benefit from extra help to succeed in school, social relationships, and future employment.1 CHD can result in changes to blood flow to the brain before and after birth, and this might affect brain development. Studies have found that the brains of children with some forms of CHD are less mature at birth. Children who have long hospital stays or other complications (premature birth or genetic/neurologic conditions) are also at risk. Studies are underway to …

Mothers’ Attributions About Child Misbehavior: Can Situational Suggestions Change General Perceptions?

ABSTRACT Mothers’ attributions about children’s misbehavior were experimentally manipulated to examine causal relationships among attributions, mood, and behavior and assess whether suggestion can change mothers’ general perceptions. Forty mothers of children aged 33 to 71 months were primed with dysfunctional child-referent (child responsible) or environment-referent (situation caused) attributions before a parent-child interaction. Mothers in the dysfunctional child-referent condition placed greater responsibility on children, reported less positive mood and endorsed more overly reactive discipline, and their children displayed more negative mood and misbehavior. The experimental manipulation also affected mothers’ general child attributions. Understanding how attributions form and change has implications for parenting interventions.