scholarly journals Optimising neurodevelopmental and psychosocial outcomes for survivors with CHD: a research agenda for the next decade

2021 ◽  
pp. 1-3
Author(s):  
Erica Sood ◽  
Jeffrey P Jacobs ◽  
Bradley S Marino
Keyword(s):  
Health Disparities ◽  
Outcomes Research ◽  
Research Agenda ◽  
Clinical Care ◽  
Neurodevelopmental Outcome ◽  
Psychosocial Outcomes ◽  
The United States ◽  
Future Research ◽  
Neurodevelopmental Outcomes ◽  
Working Groups

Abstract Neurodevelopmental and psychosocial impairments negatively impact health-related quality of life for survivors with CHD and complicate the transition to independent adulthood. Risk for neurodevelopmental and psychosocial impairments is influenced by a complex interplay among genetic, foetal, surgical, perioperative, family, and social factors, requiring a multi-pronged approach to neuroprotection and intervention. To ensure future research can ultimately reduce the burden of CHD for individuals, families, and society, the most pressing issues in cardiac neurodevelopment requiring scientific investigation must be identified. Through funding from an R13 Grant from the National Heart, Lung, and Blood Institute of the National Institutes of Health of the United States of America, the Cardiac Neurodevelopmental Outcome Collaborative convened a two-day meeting of international experts in cardiac neurodevelopmental and psychosocial research, clinical care, and health disparities, including patient and family stakeholders, to define the cardiac neurodevelopmental and psychosocial outcomes research agenda for the next decade. Seven multidisciplinary working groups were formed to address key domains crucial to the advancement of cardiac neurodevelopmental and psychosocial outcomes research: 1) Foetal Brain Development and Neuroprotection, 2) Surgical/Perioperative Neuroprotection and Neurodevelopment, 3) Characterization of Neurodevelopmental and Psychological Outcomes, 4) Neurodevelopmental and Psychosocial Intervention, 5) Parent Mental Health and Family Functioning, 6) Neurodevelopmental Education, Outreach and Advocacy, and 7) Health Disparities and Neurodevelopmental Outcomes. Working groups identified significant gaps in knowledge and critical questions that must be answered to further knowledge, policy, care, and outcomes. The development of a research agenda in cardiac neurodevelopmental and psychosocial outcomes is critical for informing collaborative initiatives and allocation of funding for research to scientific inquiries of highest value to key stakeholders.

Disparities in Health Between Black and White Americans: Current Knowledge and Directions for Future Research

2018 ◽  
pp. 456-478
Author(s):  
Thomas E. Fuller-Rowell ◽  
David S. Curtis ◽  
Adrienne M. Duke
Keyword(s):  
Health Disparities ◽  
Current Knowledge ◽  
Public Investment ◽  
The United States ◽  
Future Research ◽  
Sociocultural Factors ◽  
White Americans ◽  
Biological Mechanisms ◽  
Black And White ◽  
Racial Ethnic

Conceptual frameworks for racial/ethnic health disparities are abundant, but many have received insufficient empirical attention. As a result, there are substantial gaps in scientific knowledge and a range of untested hypotheses. Particularly lacking is specificity in behavioral and biological mechanisms for such disparities and their underlying social determinants. Alongside lack of political will and public investment, insufficient clarity in mechanisms has stymied efforts to address racial health disparities. Capitalizing on emergent findings from the Midlife in the United States (MIDUS) study and other longitudinal studies of aging, this chapter evaluates research on health disparities between black and white US adults. Attention is given to candidate behavioral and biological mechanisms as precursors to group differences in morbidity and mortality and to environmental and sociocultural factors that may underlie these mechanisms. Future research topics are discussed, emphasizing those that offer promise with respect to illuminating practical solutions to racial/ethnic health disparities.

scholarly journals Meeting the needs of the aging population: the Canadian Network on Aging and Cancer—report on the first Network meeting, 27 April 2016

2017 ◽  
Vol 24 (2) ◽  
pp. 163 ◽  
Author(s):  
M.T.E. Puts ◽  
T. Hsu ◽  
E. Szumacher ◽  
S. Sattar ◽  
S. Toubasi ◽  
...  
Keyword(s):  
Older Adults ◽  
Research Agenda ◽  
Present Report ◽  
Clinical Care ◽  
Geriatric Oncology ◽  
The United States ◽  
Research Network ◽  
High Quality Research ◽  
Inaugural Meeting ◽  
Oncology Research

The aging of the Canadian population represents the major risk factor for a projected increase in cancer incidence in the coming decades. However, the evidence base to guide management of older adults with cancer remains extremely limited. It is thus imperative that we develop a national research agenda and establish a national collaborative network to devise joint studies that will help to accelerate the development of high-quality research, education, and clinical care and thus better address the needs of older Canadians with cancer. To begin this process, the inaugural meeting of the Canadian Network on Aging and Cancer was held in Toronto, 27 April 2016. The meeting was attended by 51 invited researchers and clinicians from across Canada, as well as by international leaders in geriatric oncology from the United States and France.The objectives of the meeting were toreview the present landscape of education, clinical care, and research in the area of cancer and aging in Canada.identify issues of high research priority in Canada within the field of cancer and aging.identify current barriers to geriatric oncology research in Canada and develop potential solutions.develop a Canadian collaborative multidisciplinary research network between investigators to improve health outcomes for older adults with cancer.learn from successful international efforts to stimulate the geriatric oncology research agenda in Canada.In the present report, we describe the education, clinical care, and research priorities that were identified at the meeting.

Eliminating Health Disparities in the African American Population: The Interface of Culture, Gender, and Power

2006 ◽  
Vol 33 (4) ◽  
pp. 488-501 ◽  
Author(s):  
Collins O. Airhihenbuwa ◽  
Leandris Liburd
Keyword(s):  
African American ◽  
Health Disparities ◽  
African Americans ◽  
Task Force ◽  
Clinical Care ◽  
The United States ◽  
Task Force Report ◽  
Excess Death ◽  
Sociocultural Environment ◽  
Gender And Power

Since the release of former Secretary Margaret Heckler’s Secretary’s Task Force Report on Black and Minority Health more than two decades ago, excess death from chronic diseases and other conditions between African Americans and Whites have increased. The conclusion of that report emphasized excess death and thus clinical care, paying little attention to the sociocultural environment and its effects on risk of disease. The authors of this article contend that eliminating health disparities between the African American and White populations in the United States requires a focus on improving the social environment of African Americans. They examine the interface of culture, gender, and power and how those are central to analysis of the root causes of health disparities. The REACH 2010 project of the Centers for Disease Control offers examples on how a coalition of community and research organizations can infuse community interventions with informed considerations of culture, gender, and power to eliminate health disparities

Implementing standard screening for autism spectrum disorder in CHD

2020 ◽  
Vol 30 (8) ◽  
pp. 1118-1125
Author(s):  
Alexander Tan ◽  
Eric S. Semmel ◽  
Ian Wolf ◽  
Bailee Hammett ◽  
Dawn Ilardi
Keyword(s):  
Clinical Sample ◽  
Clinical Care ◽  
Neurodevelopmental Outcome ◽  
Retrospective Chart Review ◽  
Fold Increase ◽  
The United States ◽  
Parent Report ◽  
Autism Spectrum ◽  
Assessment System ◽  
Adaptive Behaviour

AbstractIntroduction:While the overall prevalence of autism is 1.7% in the United States of America, research has demonstrated a two- to five-fold increase in CHD. The Cardiac Neurodevelopmental Outcome Collaborative recommends screening for autism from infancy through adolescence. This study investigated the frequency of autism concerns at a single Cardiac Neurodevelopmental Program and examined current clinical practice as a way to improve quality of care.Materials and methods:Patients (n = 134; mean age = 9.0 years) included children with high-risk CHD who completed a neurodevelopmental evaluation following a formalised referral to the Cardiac Neurodevelopmental Program between 2018 and 2019. Retrospective chart review included parent report on the Behaviour Assessment System for Children-3 and Adaptive Behaviour Assessment System-3. Descriptive and correlation analyses were completed.Results:In this sample, 11.2% presented with autism-related concerns at referral, 2 were diagnosed with autism, 9 were referred to an autism specialist (6 confirmed diagnosis; 3 not completed). Thus, at least 5.9% of the sample were diagnosed with autism following thorough clinical evaluation. Analyses showed atypicality, along with deficient adaptability, leisure, social, and communication skills. Frequency of early intervention, school supports, and relation with comorbidities are reported.Discussion:Prior to assessment recommendations by the Cardiac Neurodevelopmental Outcome Collaborative, autism screening may not be completed systematically in clinical care for CHD. The current sample demonstrates a high frequency of autism in the typically referred clinical sample. Commonly used parent-report measures may reveal concerns but will not help diagnosis. Systematic use of an autism screener is essential.

scholarly journals Educational Strategies to Achieve Equitable Breast Imaging Care

2021 ◽  
Author(s):  
Katie M Davis ◽  
Natasha Monga ◽  
Chiamaka Sonubi ◽  
Hazel Asumu ◽  
Carolynn M DeBenedectis ◽  
...  
Keyword(s):  
Health Disparities ◽  
Rural Areas ◽  
Breast Imaging ◽  
Clinical Care ◽  
The United States ◽  
Screening Mammography ◽  
System Level ◽  
Diverse Population ◽  
Educational Strategies ◽  
The Impact

Abstract As the population of the United States becomes increasingly diverse, radiologists must learn to both understand and mitigate the impact of health disparities. Significant health disparities persist in radiologic care, including breast imaging. Racial and ethnic minorities, women from lower socioeconomic status, those living in rural areas, and the uninsured bear a disproportionate burden of breast cancer morbidity and mortality. Currently, there is no centralized radiology curriculum focusing on breast health disparities available to residents, breast imaging fellows, or practicing breast radiologists. While patient-, provider-, and system-level initiatives are necessary to overcome disparities, our purpose is to describe educational strategies targeted to breast imaging radiologists at all levels to provide equitable care to a diverse population. These strategies may include, but are not limited to, diversifying the breast imaging workforce, understanding the needs of a diverse population, cultural sensitivity and bias training, and fostering awareness of the existing issues in screening mammography access, follow-up imaging, and clinical care.

Integrating health disparities content into health informatics courses: a cross-sectional survey study and recommendations (Preprint)

2021 ◽  
Author(s):  
Uba Backonja ◽  
Annie T. Chen ◽  
Kenrick Cato
Keyword(s):  
Health Disparities ◽  
Online Survey ◽  
Training Programs ◽  
The United States ◽  
Survey Study ◽  
Future Research ◽  
Body Type ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Informatics Training

BACKGROUND Research suggests that while informatics solutions can help understand and address health disparities, there is potential for solutions to exacerbate existing or create new health disparities. To help future research and development of equitable solutions, we need to look upstream at how disparities are being integrated into informatics training programs. Doing so provides understanding and informs development of curricula that provide a foundation for future informaticists to build solutions that are ethical and equitable. OBJECTIVE To examine how the topic of health disparities is integrated into informatics courses. METHODS This cross-sectional, descriptive study took place April-October 2019 in the United States. Individuals teaching courses in informatics programs were recruited via listservs and email to complete an online survey. Instructors were eligible if they integrated disparities content into their informatics courses. Survey questions examined administrative aspects of the course (e.g., class size, mode of teaching, discipline of enrolled students) and disparities content integrated into the course (e.g., social determinants of health [SDOH] covered, how students were assessed on disparities related content). Participants also reported challenges they faced integrating disparities content into their courses. Quantitative data were analyzed using descriptive statistics; qualitative data were analyzed using inductive coding. RESULTS Invitations were sent to 141 individuals, including contacts for the National Library of Medicine (NLM) biomedical informatics training programs, and 11 listservs. We obtained data for 24 informatics courses that contained health disparities content. Courses were taught primarily in graduate programs (n=21, 87.5%) in informatics (n=9, 33.3%), nursing (n=7, 25.9%), and information science (n=6, 22.2%). Of the 24 courses, six (25.0%) were taught in an NLM training program. The most frequently covered SDOHs were socioeconomic status and race/ethnicity (both n=21, 87.5%); the least frequently covered were body type (n=0), low resource areas (n=2, 8.3%), and urban residences (n=3, 12.5%). Instructors noted three main types of challenges when integrating disparities related content into their courses: the need for additional resources, student-related challenges, and topic sensitivity. CONCLUSIONS Our sample included 24 informatics courses -- fewer than we had hoped -- that integrated disparities content; these courses spanned disciplines and varied in terms of the topics covered. Based on our findings, we provide recommendations for the intentional development of informatics programs to support the training of future generations of informaticians with foundational and transnational knowledge in health disparities so they are well-equipped to develop equitable informatics solutions. CLINICALTRIAL This study was not a clinical trial.

Economic analysis of medical practice variation between 1991 and 2000: The impact of patient outcomes research teams (PORTs)

2008 ◽  
Vol 24 (03) ◽  
pp. 282-293 ◽  
Author(s):  
Stephen T. Parente ◽  
Charles E. Phelps ◽  
Patrick J. O'Connor
Keyword(s):  
Medical Treatment ◽  
Patient Outcomes ◽  
Medical Practice ◽  
Outcomes Research ◽  
Clinical Care ◽  
The United States ◽  
Practice Variation ◽  
Welfare Loss ◽  
Research Teams ◽  
The Impact

Objectives:The aim of this study was to examine the impact of the multi-hundred million dollar investment by the federal government in the developing Patient Outcomes Research Teams (PORTs) in over a dozen major academic medical centers in the United States throughout the 1990s. The objective of the PORTs was to reduce unnecessary clinical variation in medical treatment.Methods:Using an economic derivation of welfare loss attributable to medical practice variation and hospital admission claims data for 2 million elderly patients generalizable to the nation, we estimate the change in welfare between 1991 and 2000, the period within which the PORTs were designed and executed and their results disseminated.Results:Our results show inpatient admission types targeted by the PORTs did have less welfare loss relative to their total expenditure by 2000, but that there was not a net decrease in the welfare loss for all hospital admissions affected by the PORT.Conclusions:We conclude that PORTs may have had favorable effects on welfare, most likely by reducing variation in clinical care, but that causality cannot be proved, and the effects were not equal across all conditions targeted by PORTs. This research provides a methodological template that may be used to evaluate the impact of patient safety research on welfare loss and on variation in medical treatment in both hospital and ambulatory settings.

The Complexity of Health Disparities: More Than Just Black–White Differences

2021 ◽  
pp. 1-10
Author(s):  
Charles Ellis ◽  
Molly Jacobs
Keyword(s):  
Health Disparities ◽  
Clinical Outcomes ◽  
The United States ◽  
Careful Examination ◽  
White Americans ◽  
Speech Language Pathology ◽  
Death Rates ◽  
The Social ◽  
Health Related ◽  
Language Pathology

Health disparities have once again moved to the forefront of America's consciousness with the recent significant observation of dramatically higher death rates among African Americans with COVID-19 when compared to White Americans. Health disparities have a long history in the United States, yet little consideration has been given to their impact on the clinical outcomes in the rehabilitative health professions such as speech-language pathology/audiology (SLP/A). Consequently, it is unclear how the absence of a careful examination of health disparities in fields like SLP/A impacts the clinical outcomes desired or achieved. The purpose of this tutorial is to examine the issue of health disparities in relationship to SLP/A. This tutorial includes operational definitions related to health disparities and a review of the social determinants of health that are the underlying cause of such disparities. The tutorial concludes with a discussion of potential directions for the study of health disparities in SLP/A to identify strategies to close the disparity gap in health-related outcomes that currently exists.

Refining Evidence-Based Treatments for Late-Life Depression

GeroPsych ◽  
2015 ◽  
Vol 28 (2) ◽  
pp. 67-76
Author(s):  
Grace C. Niu ◽  
Patricia A. Arean
Keyword(s):  
Older Adults ◽  
Mental Illness ◽  
Brain Plasticity ◽  
Late Life ◽  
Aging Population ◽  
The United States ◽  
Future Research ◽  
Evidence Based ◽  
Late Life Depression ◽  
Evidence Based Treatments

The recent increase in the aging population, specifically in the United States, has raised concerns regarding treatment for mental illness among older adults. Late-life depression (LLD) is a complex condition that has become widespread among the aging population. Despite the availability of behavioral interventions and psychotherapies, few depressed older adults actually receive treatment. In this paper we review the research on refining treatments for LLD. We first identify evidence-based treatments (EBTs) for LLD and the problems associated with efficacy and dissemination, then review approaches to conceptualizing mental illness, specifically concepts related to brain plasticity and the Research Domain Criteria (RDoc). Finally, we introduce ENGAGE as a streamlined treatment for LLD and discuss implications for future research.

A Silenced Population

Crisis ◽  
2017 ◽  
Vol 38 (6) ◽  
pp. 433-442 ◽  
Author(s):  
Kim Gryglewicz ◽  
Melanie Bozzay ◽  
Brittany Arthur-Jordon ◽  
Gabriela D. Romero ◽  
Melissa Witmeier ◽  
...  
Keyword(s):  
At Risk ◽  
Depressive Symptomatology ◽  
The United States ◽  
Future Research ◽  
At Risk Youth ◽  
Peer Relationship ◽  
Student Records ◽  
Cross Sectional ◽  
Increased Risk ◽  
Method Student

Abstract. Background: Given challenges that exceed the normal developmental requirements of adolescence, deaf and hard-of-hearing (DHH) youth are believed to be at elevated risk for engaging in suicide-related behavior (SRB). Unfortunately, little is known about the mechanisms that put these youth potentially at risk. Aims: To determine whether peer relationship difficulties are related to increased risk of SRB in DHH youth. Method: Student records (n = 74) were retrieved from an accredited educational center for deaf and blind students in the United States. Results: Peer relationship difficulties were found to be significantly associated with engagement in SRB but not when accounting for depressive symptomatology. Limitations: The restricted sample limits generalizability. Conclusions regarding risk causation cannot be made due to the cross-sectional nature of the study. Conclusion: These results suggest the need for future research that examines the mechanisms of the relationship between peer relationship difficulties, depression, and suicide risk in DHH youth and potential preventive interventions to ameliorate the risks for these at-risk youth.

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