Parental Health Literacy and Acute Care Utilization in Children With Medical Complexity.

Objective: Health literacy is the ability to find, understand, and use information and services to inform health-related decisions and actions. Inadequate health literacy is associated with health disparities, poor health outcomes, and increased emergency department (ED) visits and hospitalizations. Children with medical complexity (CMC) have high rates of acute health care utilization.

Income and Household Material Hardship in Children With Medical Complexity.

Background And Objectives: Household economic hardship negatively impacts child health but may not be adequately captured by income. We sought to determine the prevalence of household material hardship (HMH), a measure of household economic hardship, and to examine the relationship between household poverty and material hardship in a population of children with medical complexity.

Methods: We conducted a cross-sectional survey study of parents of children with medical complexity receiving primary care at a tertiary children's hospital.

Accuracy of the Exeter Hospitalizations-Office Visits-Medical Conditions-Extra Care-Social Concerns Index for Identifying Children With Complex Chronic Medical Conditions in the Clinical Setting.

Objective: Our objective was to determine the accuracy of a point-of-care instrument, the Hospitalizations-Office Visits-Medical Conditions-Extra Care-Social Concerns (HOMES) instrument, in identifying patients with complex chronic conditions (CCCs) compared to an algorithm used to identify patients with CCCs within large administrative data sets.

Methods: We compared the HOMES to Feudtner's CCCs classification system. Using administrative algorithms, we categorized primary care patients at a children's hospital into 3 categories: no chronic conditions, non-complex chronic conditions, and CCCs.

Agreement of Provider and Parent Perceptions of Complex Care Medical Homes After a Care Management Intervention.

Introduction: Children with medical complexity frequently lack coordinated and family-centered care and are best cared for in a medical home.

Method: We assessed concordance between provider and family perceptions of care management improvements during a prospective, 3-year study of nine complex care clinics and 42 primary care clinics. Using a pre-post design, we compared provider and parent perceptions of changes in care coordination and family-centered care responses using paired t tests, Spearman rank correlations, and linear regression.

Caring for Children With Medical Complexity With the Emergency Information Form.

Background And Objective: The American Academy of Pediatrics recommends an emergency information form (EIF) for children with medical complexity (CMC) to facilitate emergency care. We sought to increase the EIF completion rate at our children's hospital's CMC clinic and to evaluate the effect on caregiver and emergency department (ED) provider opinion of preparation, comfort, and communication.

Methods: We used a pre/post-quality improvement design.

Primary Care Preparation for Children with Medical Complexity for Emergency Encounters in the Community.

It can be difficult to assist children with medical complexities (CMC) in maintaining wellness outside of hospital and emergency department settings. This growing population, with high use of medical technology and specialty care, has created a challenge for community providers who may infrequently care for children with these rare disorders and needs. CMCs have increased hospitalization rates and emergency care use.

Effectiveness of exome and genome sequencing guided by acuity of illness for diagnosis of neurodevelopmental disorders.

Neurodevelopmental disorders (NDDs) affect more than 3% of children and are attributable to single-gene mutations at more than 1000 loci. Traditional methods yield molecular diagnoses in less than one-half of children with NDD. Whole-genome sequencing (WGS) and whole-exome sequencing (WES) can enable diagnosis of NDD, but their clinical and cost-effectiveness are unknown.

Primary-care providers' perceived barriers to integration of genetics services: a systematic review of the literature.

Purpose: We aimed to systematically review the literature to identify primary-care providers' perceived barriers against provision of genetics services.

Methods: We systematically searched PubMed and ERIC using key and Boolean term combinations for articles published from 2001 to 2012 that met inclusion/exclusion criteria. Specific barriers were identified and aggregated into categories based on topic similarity.