Cognitive functioning and pain interference mediate pain predictive effects on health-related quality of life in pediatric patients with Neurofibromatosis Type 1.

Objectives: The objective was to investigate the serial mediating effects of perceived cognitive functioning and pain interference in daily living in the relationship between perceived pain and overall generic health-related quality of life (HRQOL) in children, adolescents, and young adults with Neurofibromatosis Type 1 (NF1).

Methods: The Pain, Cognitive Functioning, and Pain Impact Scales from the PedsQL Neurofibromatosis Type 1 Module and the PedsQL 4.0 Generic Core Scales were completed in a multi-site national study by 323 patients ages 5-25 and 335 parents.

Speech difficulties and patient health communication mediating effects on worry and health-related quality of life in children, adolescents, and young adults with Neurofibromatosis Type 1.

The objective was to investigate the serial mediating effects of speech difficulties, patient health communication, and disease-specific worry in the relationship between neurofibromatosis (NF) symptoms (pain and skin symptoms) and total generic health-related quality of life (HRQOL) in children, adolescents, and young adults with NF Type 1 (NF1) from the patient perspective. The Speech, Communication, Worry, Pain, Skin Itch Bother, and Skin Sensations Scales from the Pediatric Quality of Life Inventory (PedsQL) NF1 Module and the PedsQL 4.0 Generic Core Scales were completed in a multi-site national study by 305 patients ages 5-25 years.

Pain, skin sensations symptoms, and cognitive functioning predictors of health-related quality of life in pediatric patients with Neurofibromatosis Type 1.

Objectives: The aim was to investigate pain, skin sensations symptoms and patient self-reported, and parent proxy-reported cognitive functioning as predictors of generic health-related quality of life (HRQOL) in pediatric patients with Neurofibromatosis Type 1 (NF1) from the perspectives of patients and parents.

Methods: The Pain, Skin Itch Bother, Skin Sensations, and Cognitive Functioning Scales from the PedsQL™ Neurofibromatosis Type 1 Module and the PedsQL™ Generic Core Scales were completed in a multi-site national study by 323 patients and 335 parents. Patients were 5-25 years of age.

PedsQL Neurofibromatosis Type 1 Module for children, adolescents and young adults: feasibility, reliability, and validity.

The objective of the present study was to report on the measurement properties of the Pediatric Quality of Life Inventory (PedsQL) Neurofibromatosis Type 1 Module for pediatric patients ages 5-25 from the perspectives of patients and parents. The 104-item PedsQL NF1 Module and 23-item PedsQL Generic Core Scales were completed in a multi-site national study by 323 patients and 335 parents (343 families). Patients were diagnosed with NF1 using the National Institutes of Health diagnostic criteria.

Weight gain and supplemental O : Risk factors during the hematopoietic cell transplant admission in pediatric patients.

Background: Respiratory failure in the pediatric hematopoietic cell transplant (HCT) recipient is the leading cause for admission to the intensive care unit and carries a high mortality rate. The objective of this study is to investigate the association of clinical risk factors with the development of respiratory failure in the pediatric allogeneic HCT recipient.

Procedures: This is a single-center, retrospective review of allogeneic pediatric HCT from 2008 to 2014.

Effectiveness of cross-cultural education for medical residents caring for burmese refugees.

Background: Limited resources are available to educate health professionals on cultural considerations and specific healthcare needs of Burmese refugees. The objective of this study was to determine the effectiveness of a module focused on cross-cultural considerations when caring for Burmese refugees.

Methods: A brief educational module using anonymously tracked pre- and post-intervention, self-administered surveys was developed and studied.

The health-related quality of life of children, adolescents, and young adults with neurofibromatosis type 1 and their families: Analysis of narratives.

Purpose: Provide an in-depth description of the health-related quality of life (HRQoL) in youth diagnosed with neurofibromatosis type 1 (NF1) and their families.

Design And Methods: Data were drawn from qualitative interviews conducted for a larger study aimed at developing the Pediatric Quality of Life Inventory™ (PedsQL™) NF1 module.

Results: Youth with NF1 and their families experience a wide range of concerns related to HRQoL due to the varied symptom expression and uncertain trajectory of the disorder.

Development of the pediatric quality of life inventory neurofibromatosis type 1 module items for children, adolescents and young adults: qualitative methods.

Health-related quality of life (HRQOL) is arguably one of the most important measures in evaluating effectiveness of clinical treatments. At present, there is no disease-specific outcome measure to assess the HRQOL of children, adolescents and young adults with Neurofibromatosis Type 1 (NF1). This study aimed to develop the items and support the content validity for the Pediatric Quality of Life Inventory™ (PedsQL™) NF1 Module for children, adolescents and young adults.

Physiologic findings in children previously ventilator dependent at home due to bronchopulmonary dysplasia.

Introduction: Bronchopulmonary dysplasia (BPD) is the primary respiratory complication of premature birth. Some preterm newborns develop chronic respiratory failure, requiring home ventilator support. While physiologic measures have been described for prematurely born children, little is known about spirometric indices in patients with severe BPD who were previously ventilator dependent at home.

Median Household Income: Association with Mortality in Children on Chronic Ventilation at Home Secondary to Bronchopulmonary Dysplasia.

The aim of this study was to determine if living in a lower income neighborhood is associated with mortality of patients with bronchopulmonary dysplasia (BPD) on home ventilation. Patients were divided into two groups by their ZIP code-based annual household income (Z-AHI), their year of birth, and the median state household income. Survival, liberation from ventilation, and decannulation rates were analyzed between the groups.

Implementation of continuous capnography is associated with a decreased utilization of blood gases.

Background: Capnography provides a continuous, non-invasive monitoring of the CO2 to assess adequacy of ventilation and provide added safety features in mechanically ventilated patients by allowing for quick identification of unplanned extubation. These monitors may allow for decreased utilization of blood gases. The objective was to determine if implementation of continuous capnography monitoring decreases the utilization of blood gases resulting in decreased charges.

Outcomes of children with severe bronchopulmonary dysplasia who were ventilator dependent at home.

Objective: To describe the incidence and outcomes of children with chronic respiratory failure secondary to severe bronchopulmonary dysplasia (BPD) on chronic positive pressure ventilation (PPV) via tracheostomy at home.

Methods: We retrospectively reviewed medical charts of patients with severe BPD who were PPV dependent at home and who were enrolled in a university-affiliated home ventilator program between 1984 and 2010. We excluded patients with other comorbidities that could contribute to the development of chronic respiratory failure.

Threshold analysis of reimbursing physicians for the application of fluoride varnish in young children.

Objective: Most state Medicaid programs reimburse physicians for providing fluoride varnish, yet the only published studies of cost-effectiveness do not show cost-savings. Our objective is to apply state-specific claims data to an existing published model to quickly and inexpensively estimate the cost-savings of a policy consideration to better inform decisions - specifically, to assess whether Indiana Medicaid children's restorative service rates met the threshold to generate cost-savings.

Methods: Threshold analysis was based on the 2006 model by Quiñonez et al.

Development of the adult PedsQL™ neurofibromatosis type 1 module: initial feasibility, reliability and validity.

Background: Neurofibromatosis type 1 (NF1) is a common autosomal dominant genetic disorder with significant impact on health-related quality of life (HRQOL). Research in understanding the pathogenetic mechanisms of neurofibroma development has led to the use of new clinical trials for the treatment of NF1. One of the most important outcomes of a trial is improvement in quality of life, however, no condition specific HRQOL instrument for NF1 exists.

Assessing the health, functional characteristics, and health needs of youth attending a noncategorical transition support program.

Purpose: To assess the health, functional characteristics, and health care service needs of youth and young adults with special health care needs attending a comprehensive, noncategorical transition program.

Methods: A self-administered survey was developed from national health surveys and clinical experience to assess concepts identified as important for successful transition to adulthood. Surveys were mailed to 198 parents of youth and young adults with special health care needs attending the transition clinic.

Effect of an annual benefit limit on adult dental expenditure and utilization: a cross-sectional analysis.

Objectives: Despite widespread use of dental benefit limits in terms of the types of services provided, an annual maximum on claims, or both, there is a dearth of literature examining their impact on either cost to the insurer or health outcomes. This study uses a natural experiment to examine dental care utilization and expenditure changes following Indiana Medicaid's introduction of a $600 individual annual limit on adult dental expenditure in 2003.

Methods: In a before and after comparison, we use two separate cross-sections of paid claims for 96+ percent of the Medicaid adult population.

Measuring the severity of infantile hemangiomas: instrument development and reliability.

Objectives: To develop instruments that measure the severity of infantile hemangiomas (Hemangioma Severity Scale [HSS]) and the complications of infantile hemangiomas for longitudinal use (Hemangioma Dynamic Complication Scale [HDCS]).

Design: Instrument development and reliability study.

Setting: Academic research.

Implementing developmental screening and referrals: lessons learned from a national project.

Objectives: To assess the degree to which a national sample of pediatric practices could implement American Academy of Pediatrics (AAP) recommendations for developmental screening and referrals, and to identify factors that contributed to the successes and shortcomings of these efforts.

Background: In 2006, the AAP released a policy statement on developmental surveillance and screening that included an algorithm to aid practices in implementation. Simultaneously, the AAP launched a 9-month pilot project in which 17 diverse practices sought to implement the policy statement's recommendations.

Dental providers' attitudes regarding the application of fluoride varnish by pediatric health care providers.

Objectives: To ascertain what proportion of dental hygienists and dentists in Indiana, United States, support the application of fluoride varnish in medical offices, and to determine if support differed by dental provider characteristics, practice characteristics, a limited assessment of knowledge about fluoride, or use of fluoride.

Methods: Practicing dental hygienists and dentists in 2005 were asked to fill out a mail questionnaire. Logistic regression models tested the association of independent variables with support for medical providers applying varnish.

Screening for celiac disease in asymptomatic children with Down syndrome: cost-effectiveness of preventing lymphoma.

Background: Studies demonstrate an increased prevalence of celiac disease in persons with Down syndrome, leading some organizations and authors to recommend universal screening of children with Down syndrome. However, many children with Down syndrome are asymptomatic, and the long-term implications of screening are unknown. The complication of celiac disease that leads to mortality in the general population is non-Hodgkin's lymphomas.