Race/ethnicity and the use of preventive health care among adults with intellectual and developmental disabilities.

BACKGROUND: Past research has been dedicated to documenting disparities in use of preventive health care faced by racial and ethnic minorities. In addition, studies have looked at the disparities in use of preventive health care experienced by individuals with intellectual and developmental disabilities (ID/DD). There is little known research that examines disparities in preventive health care use by individuals with ID/DD who identify as African American or Hispanic. OBJECTIVES: This study aimed to determine whether National Core Indicators data demonstrate racial and/or ethnic disparities in the use of preventive health care. Further, this study examined whether those racial and/or ethnic disparities in the use of preventive health care persisted when the analysis controlled for other demographic factors. METHODS: Data were derived from the 2011 to 2012 administration of the Adult Consumer Survey of the National Core Indicators Project. The association of race/ethnicity and preventive health care was assessed using binary logistic regression models. RESULTS: There seem to be differences in receipt of preventive care by race/ethnicity. However, most of these differences were not significant after other person-level factors were accounted for. CONCLUSIONS: Race/ethnicity may be less of a factor in accessing preventive care among adults with ID/DD receiving services than among the general population.

A Multifunctional, Low Cost and Sustainable Neonatal Database System.

Continuous improvement in the clinical performance of neonatal intensive care units (NICU) depends on the use of locally relevant, reliable data. However, neonatal databases with these characteristics are typically unavailable in NICUs using paper-based records, while in those using electronic records, the inaccuracy of data and the inability to customize commercial data systems limit their usability for quality improvement or research purposes. We describe the characteristics and uses of a simple, neonatologist-centered data system that has been successfully maintained for 30 years, with minimal resources and serving multiple purposes, including quality improvement, administrative, research support and educational functions. Structurally, our system comprises customized paper and electronic components, while key functional aspects include the attending-based recording of diagnoses, integration into clinical workflows, multilevel data accuracy and validation checks, and periodic reporting on both data quality and NICU performance results. We provide examples of data validation methods and trends observed over three decades, and discuss essential elements for the successful implementation of this system. This database is reliable and easily maintained; it can be developed from simple paper-based forms or used to supplement the functionality and end-user customizability of existing electronic medical records. This system should be readily adaptable to NICUs in either high- or limited-resource environments.

Unlocking the Potential of State Level Data: Opportunities to Monitor Health and Related Outcomes in People With Intellectual and Developmental Disabilities.

No single U.S. health surveillance system adequately describes the health of people with intellectual and developmental disabilities (IDD). Researchers and policy makers have sought to understand the potential of state and local administrative and survey data to produce a local as well as a national picture of the health of the population with IDD. Analyses of these secondary data sources have significant appeal because of the potential to derive new information without the burden and expense of new data collection. The authors examined the potential for data collected by states and territories to inform health surveillance in the population with IDD, including data from the administration of eligibility-based supports, health insurance claims, and surveys administered for monitoring and quality improvement. Although there are opportunities to align and harmonize datasets to enhance the available information, there is no simple path to use state and local data to assess and report on the health of the population with IDD. Recommendations for policy, practice, and research include the development and use of consistent operational definitions in data collection, and research to fill knowledge gaps.

Using Option Grids: steps toward shared decision-making for neonatal circumcision.

OBJECTIVES: To assess the impact, acceptability and feasibility of a short encounter tool designed to enhance the process of shared decision-making and parental engagement. METHODS: We analyzed video-recordings of clinical encounters, half undertaken before and half after a brief intervention that trained four clinicians how to use Option Grids, using an observer-based measure of shared decision-making. We also analyzed semi-structured interviews conducted with the clinicians four weeks after their exposure to the intervention. RESULTS: Observer OPTION(5) scores were higher at post-intervention, with a mean of 33.9 (SD=23.5) compared to a mean of 16.1 (SD=7.1) for pre-intervention, a significant difference of 17.8 (95% CI: 2.4, 33.2). Prior to using the intervention, clinicians used a consent document to frame circumcision as a default practice. Encounters with the Option Grid conferred agency to both parents and clinicians, and facilitated shared decision-making. Clinician reported recognizing the tool's positive effect on their communication process. CONCLUSIONS: Tools such as Option Grids have the potential to make it easier for clinicians to achieve shared decision-making. PRACTICE IMPLICATIONS: Encounter tools have the potential to change practice. More research is needed to test their feasibility in routine practice.