Robert J. McGrath

National profile of children with Down syndrome: disease burden, access to care, and family impact.

OBJECTIVE To measure the co-morbidities associated with Down syndrome compared with those in other children with special health care needs (CSHCN). Additionally, to examine reported access to care, family impact, and unmet needs for children with Down syndrome compared with other CSHCN. STUDY DESIGN An analysis was conducted on the nationally representative 2005 to 2006 National Survey of Children with Special Health Care Needs. Bivariate analyses compared children with Down syndrome with all other CSHCN. Multivariate analyses examined the role of demographic, socioeconomic, and medical factors on measures of care receipt and family impact. RESULTS An estimated 98,000 CSHCN have Down syndrome nationally. Compared with other CSHCN, children with Down syndrome had a greater number of co-morbid conditions, were more likely to have unmet needs, faced greater family impacts, and were less likely to have access to a medical home. These differences become more pronounced for children without insurance and from low socioeconomic status families. CONCLUSIONS Children with Down syndrome disproportionately face greater disease burden, more negatively pronounced family impacts, and greater unmet needs than other CSHCN. Promoting medical homes at the practice level and use of those services by children with Down syndrome and other CSHCN may help mitigate these family impacts.

Access to Genetic Counseling for Children With Autism, Down Syndrome, and Intellectual Disabilities

OBJECTIVE: We examined the need for genetic counseling services (GCS) for families of children with autism spectrum disorder (ASD), Down syndrome (DS), and/or mental retardation (MR) and factors that influence the receipt of needed GCS for those children relative to other children with special health care needs (CSHCN). METHODS: Analysis was conducted on the 2005–2006 National Survey of Children With Special Health Care Needs, a nationally representative sample. Bivariate analyses were conducted by examining need for and receipt of GCS for children with ASD, DS, and/or MR and other CSHCN as well as differences by contextual variables using the health belief model (HBM). Logistic regression analyses were conducted to assess the relative impact of receipt of needed GCS by HBM constructs. RESULTS: Families of children with diagnoses of ASD, DS, and/or MR perceive significantly higher need for GCS than other CSHCN. The presence of a medical home is the single most important factor in facilitating access to GCS, together with the presence of insurance, particularly private or a combination of private and public insurance. As income and education attainment decrease, barriers to GCS rise. CONCLUSIONS: This analysis supports strategies for improving linkages between specialty providers and the medical home at which primary care is delivered. Increased effort should be made to attend to those who experience barriers that result from lack of insurance, poverty, low education, or racial or ethnic differences. Health professionals need to collaborate in developing solutions to underinsurance or lack of insurance for CSHCN.

Using the Electronic Health Record in Nursing Research: Challenges and Opportunities

Changes in the patient record from the paper to the electronic health record format present challenges and opportunities for the nurse researcher. Current use of data from the electronic health record is in a state of flux. Novel data analytic techniques and massive data sets provide new opportunities for nursing science. Realization of a strong electronic data output future relies on meeting challenges of system use and operability, data presentation, and privacy. Nurse researchers need to rethink aspects of proposal development. Joining ongoing national efforts aimed at creating usable data output is encouraged as a means to affect system design. Working to address challenges and embrace opportunities will help grow the science in a way that answers important patient care questions.

The Impact of Socioeconomic Factors on Asthma Hospitalization Rates by Rural Classification

Asthma hospitalization rates have increased in the past decade. Research has shown that there are multiple correlates for this increase but that driving causal factors may differ for asthma hospitalization rates in rural and non-rural settings. Here we examine the socioeconomic correlates to asthma hospitalization rates in Maine for both rural and non-rural populations to examine the similarity and differences in causal factors. Findings indicate a clear SES gradient relative to asthma hospitalization rates; as population measured SES decreased, asthma hospitalization rates increased. The associated causal factors were found to differ in rural and non-rural areas. In non-rural areas, the presence of insurance was associated with increases in the asthma hospitalization rates while in rural areas, income, occupation and the percentage of non-English language speaking persons were associated with lower asthma hospitalization rates. Public policy should focus on targeted prevention strategies at the community level, especially in rural areas where cultural competency and socioeconomic factors are increasingly important.

Development of an Evidence-Based Data Skills Curriculum for Public Health Professionals

Abstract Background: This article examines the development and implementation of “Prove It! Let the Data Tell the Story”, a day-and-a-half replicable training curriculum designed to enhance the data and information skills of public health professionals. Purpose: Prove It! emphasizes the importance of reliable and valid health data collection, analysis, and reporting in identifying the surrounding issues that have a measurable impact on communities. Methods: A total of 56 participants attended Prove It! in 2004 and 2005 during three sessions across New Hampshire. Participants were administered pre- and post-tests to evaluate knowledge and satisfaction. Results: Attendees showed marked improvement in the understanding of statistical concepts, and a majority of attendees felt the course would assist them personally in their work and reported that they would recommend Prove It! to colleagues. Discussion: The Prove It! curriculum provides an effective and user-friendly format for enhancing data and information skills within a train-the-trainer format. Translation to Health Education Practice: Prove It! allows organizations to enhance the analytic skill sets of the public health and social service workforce personnel within their communities.

National Survey of Providers Treating Patients With Metabolic Disorders Identified by Newborn Screening Demonstrates Challenges Faced by Clinical Care Systems

Objectives. To evaluate care processes for infants who are identified by newborn screening (NBS) and diagnosed with metabolic disorders during their first year of life. Methods. A survey instrument was used to assess the scope and intensity of services needed to provide quality health care for patients from birth to 1 year of age who have a metabolic disorder identified by NBS. Significance testing was not performed; descriptive analyses are reported. Results. Providers spend significant amounts of time on activities that are not direct patient care. The most challenging aspect of their work was the lack of reimbursement for care. Conclusion. Provision of genetics services for patients with a metabolic disorder is time and labor intensive, and insurance coverage and reimbursement for these services remain inadequate. Health care payment and/or system reform is necessary to provide optimal care to patients with metabolic disorders identified by NBS.

Patient Satisfaction and Ultrasound Use During Pregnancy

Use, number, and frequency of ultrasounds women receive during pregnancy vary widely in practice. Current evidence suggests that women presenting with pregnancy complications benefit from additional ultrasounds, although excessive ultrasound use in low risk pregnancies may be unnecessary, costly and potentially harmful. However, evidence also finds that the use of ultrasound technology is associated with mothers’ feelings of security and satisfaction with care; health care organizations are incentivized to promote these feelings of patient satisfaction, especially when clinical risk is considered low. Here, we examine the impact of ultrasound use on satisfaction during pregnancy among women in the Northeast who have recently given birth through an online retrospective survey. Contrary to expectations, findings suggest that ultrasound use is not a significant driver of satisfaction with pregnancyrelated care. Efforts to enhance patient satisfaction during pregnancy using ultrasounds may increase resource use and cost, but do little to enhance patient experience overall

State-Sponsored Public Reporting Of Hospital Quality

without prior written permission from the Publisher. All rights reserved. or mechanical, including photocopying or by information storage or retrieval systems, may be reproduced, displayed, or transmitted in any form or by any means, electronic States copyright law (Title 17, U.S. Code), no part of by Project HOPE The People-to-People Health Foundation. As provided by United Suite 600, Bethesda, MD 20814-6133. Copyright