Department of Health Promotion and Behavioral Sciences, University of Louisville School of Public... more Department of Health Promotion and Behavioral Sciences, University of Louisville School of Public Health and Information Sciences, Louisville, Kentucky Departments of Medical Education and Neurology and Rehabilitation, University of Illinois College of Medicine and University of Illinois, Chicago, Illinois Department of PM&R, University of Pittsburgh Medical Center, Pittsburgh, Pennsylvania Department of Physical Medicine & Rehabilitation, Spaulding Rehabilitation Hospital and Harvard Medical School, Boston, Massachusetts Kelley Adaptive Sports Research Institute, Spaulding Rehabilitation Network, Boston, Massachusetts
Neurodegenerative disorders, including movement disorders, are complex multisystem disorders char... more Neurodegenerative disorders, including movement disorders, are complex multisystem disorders characterized by abnormal protein aggregates that accumulate in select regions in the central, peripheral, and autonomic nervous systems. Movement disorders are neurologic syndromes characterized by either an excess of movement or a paucity of voluntary and automatic movements, unrelated to weakness or spasticity. Clinically, movement disorders are manifestations of the loss of modulatory influence by the extra-pyramidal system and may be classified as hyperkinetic or hypokinetic disorders. Under hyperkinetic disorders, we will discuss restless leg syndrome (RLS) and abnormal movements, including tremor, dystonia, myoclonus, chorea, and tics. Under hypokinetic disorders, we will discuss Parkinson disease (PD) and Parkinson plus syndromes, including progressive supranuclear palsy (PSP), multiple system atrophy (MSA), and corticobasal ganglionic degeneration (CBGD).
BACKGROUND: Recent advances in medical care have increased life expectancy and improved the quali... more BACKGROUND: Recent advances in medical care have increased life expectancy and improved the quality of life for people with Down syndrome (DS). These advances are the result of both pre-clinical and clinical research but much about DS is still poorly understood. In 2020, the NIH announced their plan to update their DS research plan and requested input from the scientific and advocacy community. OBJECTIVE: The National Down Syndrome Society (NDSS) and the LuMind IDSC Foundation worked together with scientific and medical experts to develop recommendations for the NIH research plan. METHODS: NDSS and LuMind IDSC assembled over 50 experts across multiple disciplines and organized them in eleven working groups focused on specific issues for people with DS. RESULTS: This review article summarizes the research gaps and recommendations that have the potential to improve the health and quality of life for people with DS within the next decade. CONCLUSIONS: This review highlights many of the...
A recent publication by Iezzoni et al titled Physicians’ Perceptions of People with Disability an... more A recent publication by Iezzoni et al titled Physicians’ Perceptions of People with Disability and Their Health Care revealed physicians’ systemic misperceptions of quality of life of people with disabilities and poor confidence in their ability to understand and accommodate the unique needs of people with disabilities in their practices, which was associated with their reluctance to accept such patients in their practices. In this perspective piece, we highlight and breakdown some of the key issues identified in Iezzoni et al’s article, discuss American Academy of Physical Medicine & Rehabilitation (AAPM&R) led initiatives that have advocated for much needed changes to curricula and disability-related competencies, and create a call to action that will ultimately lead to an envisioned future where all people with disabilities have access to high-quality health care free of prejudice and discrimination. According to the Centers for Disease Control and Prevention, 26% of adults have a disability of some type. Disability is a part of the human experience, but disability is disproportionately experienced by women, individuals with income below the federal poverty level, minorities, those with lower educational attainment, and individuals living in rural areas. People with disabilities experience discrimination and significant health care disparities including inequitable access to primary and specialty care, access to prescriptions, goodquality health care, and overall, have high rates of unmet health care needs. For example, a third of working-age adults with disabilities do not have a usual health care provider and a third have unmet health care needs. As Iezzoni et al highlight, physicians are not exempt from deficit-based perspectives about people with disabilities, and many physicians misperceive quality of life for people with disabilities. As a result, when physicians make medical judgments and care decisions, the results can be a deadly form of discrimination.
PURPOSE: The COVID-19 pandemic hastened the need for graduate medical education (GME) innovation,... more PURPOSE: The COVID-19 pandemic hastened the need for graduate medical education (GME) innovation, resulting in the creation of multiple pediatric rehabilitation medicine (PRM) e-learning initiatives. There has been a paucity of data regarding trainee perceptions regarding quickly developed new methods of learning during the pandemic. This study explored PRM trainee perceptions of e-learning and effects of the pandemic on education. METHODS: Questionnaire study with data collected via REDCap. RESULTS: Greater than half of PRM trainees (56.6%, 30/53) responded. Most respondents reported that the virtual lectures series (79.3%), journal club (78.9%), and virtual arts initiatives (75.0%) were valuable to their education. Common benefits noted included access to subject experts, networking, lecture recording, and location flexibility. Common concerns included lack of protected time, virtual platform fatigue, and decreased engagement. Most respondents were not redeployed. Relative to befo...
Interdisciplinary rounding on identified patients on consistent basis. Every shift neuro-checks t... more Interdisciplinary rounding on identified patients on consistent basis. Every shift neuro-checks to provide a more clear basis of comparison when there is a decline. Afternoon nursing huddles focused on labs, I’s and O’s, vitals, sepsis screen, and neuro examination. Main Outcome Measures: Acute care transfer rates Results: Improvement in stroke unit acute care transfers from 29% in February 2017 at project start, to an all time low of 6.25% in the month of July 2017. The overall hospital acute care transfer rate dropped from 21% in February 2017 to 11% in July 2017. Conclusions: As the medical complexity of patients admitted to acute inpatient rehabilitation increases, the rates of complications also increase. Early identification of high risk patients allows problems to be caught earlier and prevent ACTs. Level of Evidence: Level III
Evidence of persistent racial and ethnic disparities in health service use is substantial. Even a... more Evidence of persistent racial and ethnic disparities in health service use is substantial. Even among Medicaid beneficiaries, minority individuals may have lower use of specific health services relative to Whites due to varying degrees of trust in the health system, beliefs about the usefulness of medical treatment, provider stereotyping, or geographic service availability. Prior research demonstrated that a Florida Medicaid disease management program led to reductions in service disparities between Whites and African Americans. We study a Medicaid Integrated Case Management program implemented in Virginia, which shares disease management program objectives but can be applied to a broader range of patients. Two versions of the program are assessed, the latter of which incorporated more patient-focused and targeted approaches in identifying client needs and structuring patient interaction. Both versions of the program were associated with reductions in disparities, especially for phy...
Medicaid plans, whose patients often have complex medical, social, and behavioral needs, seek too... more Medicaid plans, whose patients often have complex medical, social, and behavioral needs, seek tools to effectively manage enrollees and improve access to quality care while containing costs. The aim of this study is to examine the effects of an integrated case management (ICM) program operated by a Medicaid managed care plan on health service use and spending for nonelderly, nonpregnant adults. We estimate the relationship between intensity of ICM program involvement and changes in utilization and spending for patients who participated in ICM. We examine whether effects differ between high-risk and lower-risk individuals and between the early and late stages of the program, given that the latter relied on more targeted and patient-centered approaches. Specifically, we estimate linear regressions modeling changes in utilization and spending outcomes as a function of number of program contacts, conditional on number of days over which contacts occurred, as well as individual-level covariates and case manager fixed effects. In the late ICM program period, we observe significant decreases in outpatient utilization associated with program involvement intensity among high-risk ICM participants. We also observe decreases in spending associated with program involvement intensity among the lower-risk group in the late period, although there is no significant impact on spending among high-risk enrollees. ICM can be a successful strategy for impacting health services use and spending. Our findings suggest that careful program targeting, well-structured client engagement, and direct one-on-one contact are vitally important for achieving program objectives.
In response to the limited information about health information and training needs among persons ... more In response to the limited information about health information and training needs among persons with disabilities, a collaborative group of Alabama researchers, educators, and clinicians was formed to implement a statewide needs assessment with support provided by the Alabama Council for Developmental Disabilities and the National Network of Libraries of Medicine. Educational and assessment activities were guided by the Systems
Retrieving online health information can be challenging for many individuals with disabilities an... more Retrieving online health information can be challenging for many individuals with disabilities and their caregivers. Librarians and other informed mediators have an important role to guide consumers and caregivers to web sites posting authoritative, unbiased, and current health information specific to an individual's needs using the mnemonic “A-B-C” (Authority, Bias, and Currency). Users can also identify quality indicators from accrediting or certifying organizations. Reliable information benefits individuals with disabilities and caregivers, facilitating active participation and informed decision making about health. This article provides a brief process for librarians and health educators to use when assisting individuals with disabilities and their caregivers.
Department of Health Promotion and Behavioral Sciences, University of Louisville School of Public... more Department of Health Promotion and Behavioral Sciences, University of Louisville School of Public Health and Information Sciences, Louisville, Kentucky Departments of Medical Education and Neurology and Rehabilitation, University of Illinois College of Medicine and University of Illinois, Chicago, Illinois Department of PM&R, University of Pittsburgh Medical Center, Pittsburgh, Pennsylvania Department of Physical Medicine & Rehabilitation, Spaulding Rehabilitation Hospital and Harvard Medical School, Boston, Massachusetts Kelley Adaptive Sports Research Institute, Spaulding Rehabilitation Network, Boston, Massachusetts
Neurodegenerative disorders, including movement disorders, are complex multisystem disorders char... more Neurodegenerative disorders, including movement disorders, are complex multisystem disorders characterized by abnormal protein aggregates that accumulate in select regions in the central, peripheral, and autonomic nervous systems. Movement disorders are neurologic syndromes characterized by either an excess of movement or a paucity of voluntary and automatic movements, unrelated to weakness or spasticity. Clinically, movement disorders are manifestations of the loss of modulatory influence by the extra-pyramidal system and may be classified as hyperkinetic or hypokinetic disorders. Under hyperkinetic disorders, we will discuss restless leg syndrome (RLS) and abnormal movements, including tremor, dystonia, myoclonus, chorea, and tics. Under hypokinetic disorders, we will discuss Parkinson disease (PD) and Parkinson plus syndromes, including progressive supranuclear palsy (PSP), multiple system atrophy (MSA), and corticobasal ganglionic degeneration (CBGD).
BACKGROUND: Recent advances in medical care have increased life expectancy and improved the quali... more BACKGROUND: Recent advances in medical care have increased life expectancy and improved the quality of life for people with Down syndrome (DS). These advances are the result of both pre-clinical and clinical research but much about DS is still poorly understood. In 2020, the NIH announced their plan to update their DS research plan and requested input from the scientific and advocacy community. OBJECTIVE: The National Down Syndrome Society (NDSS) and the LuMind IDSC Foundation worked together with scientific and medical experts to develop recommendations for the NIH research plan. METHODS: NDSS and LuMind IDSC assembled over 50 experts across multiple disciplines and organized them in eleven working groups focused on specific issues for people with DS. RESULTS: This review article summarizes the research gaps and recommendations that have the potential to improve the health and quality of life for people with DS within the next decade. CONCLUSIONS: This review highlights many of the...
A recent publication by Iezzoni et al titled Physicians’ Perceptions of People with Disability an... more A recent publication by Iezzoni et al titled Physicians’ Perceptions of People with Disability and Their Health Care revealed physicians’ systemic misperceptions of quality of life of people with disabilities and poor confidence in their ability to understand and accommodate the unique needs of people with disabilities in their practices, which was associated with their reluctance to accept such patients in their practices. In this perspective piece, we highlight and breakdown some of the key issues identified in Iezzoni et al’s article, discuss American Academy of Physical Medicine & Rehabilitation (AAPM&R) led initiatives that have advocated for much needed changes to curricula and disability-related competencies, and create a call to action that will ultimately lead to an envisioned future where all people with disabilities have access to high-quality health care free of prejudice and discrimination. According to the Centers for Disease Control and Prevention, 26% of adults have a disability of some type. Disability is a part of the human experience, but disability is disproportionately experienced by women, individuals with income below the federal poverty level, minorities, those with lower educational attainment, and individuals living in rural areas. People with disabilities experience discrimination and significant health care disparities including inequitable access to primary and specialty care, access to prescriptions, goodquality health care, and overall, have high rates of unmet health care needs. For example, a third of working-age adults with disabilities do not have a usual health care provider and a third have unmet health care needs. As Iezzoni et al highlight, physicians are not exempt from deficit-based perspectives about people with disabilities, and many physicians misperceive quality of life for people with disabilities. As a result, when physicians make medical judgments and care decisions, the results can be a deadly form of discrimination.
PURPOSE: The COVID-19 pandemic hastened the need for graduate medical education (GME) innovation,... more PURPOSE: The COVID-19 pandemic hastened the need for graduate medical education (GME) innovation, resulting in the creation of multiple pediatric rehabilitation medicine (PRM) e-learning initiatives. There has been a paucity of data regarding trainee perceptions regarding quickly developed new methods of learning during the pandemic. This study explored PRM trainee perceptions of e-learning and effects of the pandemic on education. METHODS: Questionnaire study with data collected via REDCap. RESULTS: Greater than half of PRM trainees (56.6%, 30/53) responded. Most respondents reported that the virtual lectures series (79.3%), journal club (78.9%), and virtual arts initiatives (75.0%) were valuable to their education. Common benefits noted included access to subject experts, networking, lecture recording, and location flexibility. Common concerns included lack of protected time, virtual platform fatigue, and decreased engagement. Most respondents were not redeployed. Relative to befo...
Interdisciplinary rounding on identified patients on consistent basis. Every shift neuro-checks t... more Interdisciplinary rounding on identified patients on consistent basis. Every shift neuro-checks to provide a more clear basis of comparison when there is a decline. Afternoon nursing huddles focused on labs, I’s and O’s, vitals, sepsis screen, and neuro examination. Main Outcome Measures: Acute care transfer rates Results: Improvement in stroke unit acute care transfers from 29% in February 2017 at project start, to an all time low of 6.25% in the month of July 2017. The overall hospital acute care transfer rate dropped from 21% in February 2017 to 11% in July 2017. Conclusions: As the medical complexity of patients admitted to acute inpatient rehabilitation increases, the rates of complications also increase. Early identification of high risk patients allows problems to be caught earlier and prevent ACTs. Level of Evidence: Level III
Evidence of persistent racial and ethnic disparities in health service use is substantial. Even a... more Evidence of persistent racial and ethnic disparities in health service use is substantial. Even among Medicaid beneficiaries, minority individuals may have lower use of specific health services relative to Whites due to varying degrees of trust in the health system, beliefs about the usefulness of medical treatment, provider stereotyping, or geographic service availability. Prior research demonstrated that a Florida Medicaid disease management program led to reductions in service disparities between Whites and African Americans. We study a Medicaid Integrated Case Management program implemented in Virginia, which shares disease management program objectives but can be applied to a broader range of patients. Two versions of the program are assessed, the latter of which incorporated more patient-focused and targeted approaches in identifying client needs and structuring patient interaction. Both versions of the program were associated with reductions in disparities, especially for phy...
Medicaid plans, whose patients often have complex medical, social, and behavioral needs, seek too... more Medicaid plans, whose patients often have complex medical, social, and behavioral needs, seek tools to effectively manage enrollees and improve access to quality care while containing costs. The aim of this study is to examine the effects of an integrated case management (ICM) program operated by a Medicaid managed care plan on health service use and spending for nonelderly, nonpregnant adults. We estimate the relationship between intensity of ICM program involvement and changes in utilization and spending for patients who participated in ICM. We examine whether effects differ between high-risk and lower-risk individuals and between the early and late stages of the program, given that the latter relied on more targeted and patient-centered approaches. Specifically, we estimate linear regressions modeling changes in utilization and spending outcomes as a function of number of program contacts, conditional on number of days over which contacts occurred, as well as individual-level covariates and case manager fixed effects. In the late ICM program period, we observe significant decreases in outpatient utilization associated with program involvement intensity among high-risk ICM participants. We also observe decreases in spending associated with program involvement intensity among the lower-risk group in the late period, although there is no significant impact on spending among high-risk enrollees. ICM can be a successful strategy for impacting health services use and spending. Our findings suggest that careful program targeting, well-structured client engagement, and direct one-on-one contact are vitally important for achieving program objectives.
In response to the limited information about health information and training needs among persons ... more In response to the limited information about health information and training needs among persons with disabilities, a collaborative group of Alabama researchers, educators, and clinicians was formed to implement a statewide needs assessment with support provided by the Alabama Council for Developmental Disabilities and the National Network of Libraries of Medicine. Educational and assessment activities were guided by the Systems
Retrieving online health information can be challenging for many individuals with disabilities an... more Retrieving online health information can be challenging for many individuals with disabilities and their caregivers. Librarians and other informed mediators have an important role to guide consumers and caregivers to web sites posting authoritative, unbiased, and current health information specific to an individual's needs using the mnemonic “A-B-C” (Authority, Bias, and Currency). Users can also identify quality indicators from accrediting or certifying organizations. Reliable information benefits individuals with disabilities and caregivers, facilitating active participation and informed decision making about health. This article provides a brief process for librarians and health educators to use when assisting individuals with disabilities and their caregivers.
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