About Whom Are We Talking When We Use Intellectual and Developmental Disabilities?

Importance: Communicating clearly about who is included in a population group is a critical element to effective dissemination and knowledge transfer. This narrative review highlights the inconsistency as it relates to communicating about individuals with intellectual disability (ID) and developmental disability (DD).

Observations: There is enormous variability in the use of definitions and abbreviations in the field of intellectual disability and developmental disabilities.

Through the Looking Glass: A Data Lens on Health of People With Intellectual and Developmental Disabilities.

Population level data on health of people with intellectual and developmental disabilities (IDD) are sorely needed to identify their health status, health disparities, and health needs. Key considerations to inform programs and policies need to address prevalence, problem identification, and progress assessment. Recent advances have been made in health data about people with disabilities generally that identify strategies for improving health data for people with IDD, including critical need for a standardized operational definition and survey identifiers of IDD.

Research About Us, With Us: An Inclusive Research Case Study.

Inclusive research combines the expertise of academically trained researchers with the lived experience of individuals with disabilities to render results that are more accessible, accountable, and meaningful to the disability community. In this case study, adults with intellectual and developmental disabilities (IDD) contributed as co-researchers to a series of studies on mental health of adults with intellectual disability. The research model, specific engagement strategies, and lessons learned are shared.

Improved patient safety with a simplified operating room to pediatric intensive care unit handover tool (PATHQS).

Introduction: Patient handover is a crucial transition requiring a high level of coordination and communication. In the BC Children's Hospital (BCCH) pediatric intensive care unit (PICU), 10 adverse events stemming from issues that should have been addressed at the operating room (OR) to PICU handover were reported into the patient safety learning system (PSLS) within 1 year. We aimed to undertake a quality improvement project to increase adherence to a standardized OR to PICU handover process to 100% within a 6-month time frame.

Pediatric Delirium Educational Tool Development With Intensive Care Unit Clinicians and Caregivers in Canada: Focus Group Study.

Background: Pediatric intensive care unit (PICU)-associated delirium contributes to a decline in postdischarge quality of life, with worse outcomes for individuals with delayed identification. As delirium screening rates remain low within PICUs, caregivers may be able to assist with early detection, for which they need more education, as awareness of pediatric delirium among caregivers remains limited.

Objective: This study aimed to develop an educational tool for caregivers to identify potential delirium symptoms during their child's PICU stay, educate them on how to best support their child if they experience delirium, and guide them to relevant family resources.

Recruiting the Voices of Persons With Intellectual and Developmental Disabilities in Policy Development: Priorities for Health Equity Data.

Through focus groups, adults with intellectual and developmental disabilities (IDD) provided their priorities for health equity data, surveys, and information dissemination by U.S. federal agencies.

Compensatory gain based on lysine level in finishing pigs after being fed lysine deficient 97% corn diets for 3 or 6 wk.

The objective of this experiment was to evaluate increasing the concentration of lysine on the compensatory gain of finishing pigs during their recovery period after being fed a 97% corn holding diet for 3 or 6 wk. One thousand six hundred and eighty pigs with a starting body weight of 73.5 ± 2.

Effect of apneic oxygenation with intubation to reduce severe desaturation and adverse tracheal intubation-associated events in critically ill children.

Background: Determine if apneic oxygenation (AO) delivered via nasal cannula during the apneic phase of tracheal intubation (TI), reduces adverse TI-associated events (TIAEs) in children.

Methods: AO was implemented across 14 pediatric intensive care units as a quality improvement intervention during 2016-2020. Implementation consisted of an intubation safety checklist, leadership endorsement, local champion, and data feedback to frontline clinicians.

Putting "ME" into measurement: Adapting self-report health measures for use with individuals with intellectual disability.

Background: Self-report is important for measuring health outcomes; however, most research in intellectual disability (ID) relies on proxy report. The lack of cognitively accessible measures is one barrier to accurate self-reporting by individuals with ID.

Aims: This paper describes the process of adapting self-report measures of health status, health-related quality of life, and environment for use by individuals with ID and presents evidence on their usability (accessibility), usefulness (independent self-report), and reliability (internal consistency and test-retest).

Invisible populations: Who is missing from research in intellectual disability?

It is estimated that approximately 41% of adults with intellectual and developmental disability (IDD) are served through the developmental disabilities (DD) system in the US. The remaining 59% include individuals who meet diagnostic criteria but are not actively receiving paid services or may not be known to the DD system. Scholars have referred to this group as the "hidden majority.

It's time to reconsider how we define health: Perspective from disability and chronic condition.

Our understanding of health has changed substantially since the World Health Organization initially defined health in 1948 as "a state of complete physical, mental and social and well-being and not merely the absence of disease or infirmity". These changes include reconceptualizing health on a continuum rather than as a static state, and adding existential health to physical, mental, and social well-being. Further, good health requires adaptation in coping with stress and is influenced by social, personal and environmental factors.

A Call for Better Data on Prevalence and Health Surveillance of People With Intellectual and Developmental Disabilities.

The U.S. approach to the health of people with intellectual and developmental disabilities (IDD) is fraught with paradox.

What Matters in Population Health and How We Count It Among People With Intellectual and Developmental Disabilities.

This issue, presents an overview of health surveillance research for people with intellectual and developmental disabilities (IDD) in the United States. Although public health now conducts surveillance of people with disabilities broadly defined and compares their health status with that of individuals without disabilities, there are many challenges in conducting health surveillance of people with IDD. Difficulties include how to define cases, how to find cases, and how to obtain accurate information ( Krahn, Fox, Campbell, Ramon, & Jesien, 2010 ).

Identifying People With Intellectual and Developmental Disabilities in National Population Surveys.

Public health and policy planning for adults with intellectual and developmental disabilities (IDD) is imperiled by the lack of ongoing national surveillance data on prevalence and health status. In 2018, the Administration on Intellectual and Developmental Disabilities appointed a workgroup of representatives from key federal agencies and national experts to recommend strategies to improve prevalence estimates and health surveillance for people with IDD. This article presents the workgroup findings on the availability of prevalence and health surveillance data for adults with IDD and suggested items that could identify respondents with IDD on national surveys with special attention to modifications in the National Health Interview Survey.

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).

Data Linkage: Canadian and Australian Perspectives on a Valuable Methodology for Intellectual and Developmental Disability Research.

Data linkage holds great promise for generating new information about people with intellectual and developmental disabilities (IDD) as a population, yet few centers have developed the infrastructure to utilize this methodology. Two examples, from Canada and Australia, describe their efforts in building data linkage capabilities, and how linked databases can be used to identify persons with IDD and used for population-based research. The value of data linkage is illustrated through new estimates of prevalence of IDD; health service utilization patterns; associations with sociodemographic characteristics, and with physical and mental health conditions (e.

The impact of an introductory animal handling course on undergraduate students who lack previous livestock handling experience.

A majority of animal science undergraduates have limited livestock handling experience when they come to college. To address this issue, a course based on livestock handling, safety, and welfare was implemented in the Department of Animal Science at Iowa State University. This study aimed to (i) determine whether the course was effective at improving the comfort level of a student while handling livestock and (ii) identify demographic factors that contributed to student performance in the course.

Validation of finger blood pressure monitoring in children.

Background: Continuous beat-to-beat blood pressure monitoring permits the rapid detection of blood pressure fluctuations for cardiovascular reflex testing and clinical haemodynamic monitoring. In adults, this can be achieved noninvasively with high accuracy, using finger blood pressure monitoring with volume clamp photoplethysmography. However, data are lacking on the validity of finger blood pressure monitoring in children compared to the gold standard - invasive intra-arterial blood pressure monitoring.

Leveraging Public Health Research to Inform State Legislative Policy that Promotes Health for Children and Families.

Purpose Engagement in policy is an essential public health service, with state legislatures serving as important arenas for activity on issues affecting children and families. However, a gap in communication often exists between policymakers and public health researchers who have the research knowledge to inform policy issues. We describe one tool for researchers to better leverage public health research to inform state legislative policymaking on issues of relevance to children and families.

Population Health in Pediatric Speech and Language Disorders: Available Data Sources and a Research Agenda for the Field.

Purpose: The aim of the study was to provide an overview of population science as applied to speech and language disorders, illustrate data sources, and advance a research agenda on the epidemiology of these conditions.

Method: Computer-aided database searches were performed to identify key national surveys and other sources of data necessary to establish the incidence, prevalence, and course and outcome of speech and language disorders. This article also summarizes a research agenda that could enhance our understanding of the epidemiology of these disorders.

Adults aging 'with' and 'into' paralysis: Epidemiological analyses of demography and health.

Background: Survival for many individuals with paralysis is increasing, making this population a larger subset of the aging population (Molton, & Jensen, 2010). Yet little is known about the demographics and health of this population (Freedman, 2014).

Objective: This study is one of the first evaluations of the differences in etiology, sociodemographic and health characteristics (i.

Measurement characteristics for two health-related quality of life measures in older adults: The SF-36 and the CDC Healthy Days items.

Background: The Short Form Health Survey (SF-36) and the Centers for Disease Control and Prevention (CDC) Healthy Days items are well known measures of health-related quality of life. The validity of the SF-36 for older adults and those with disabilities has been questioned.

Objective: Assess the extent to which the SF-36 and the Centers for Disease Control and Prevention (CDC) Healthy Days items measure the same aspects of health; whether the SF-36 and the CDC unhealthy days items are invariant across gender, functional status, or the presence of chronic health conditions of older adults; and whether each of the SF-36's eight subscales is independently associated with the CDC Healthy Days items.