National Institute On Disability And Rehabilitation Research Research Articles

Still having his say: David Yoder’s legacy in AAC

On February 2 2023, one of the guiding lights in the field of augmentative and alternative communication (AAC) for more than four decades, David E. Yoder, passed away at the age of 90. A voracious reader and gifted storyteller, David was particularly fond of a quote from George Bernard Shaw’s Back to Methuselah, “You see things; and you say ‘Why?’ but I dream things that never were; and I say ‘Why not?’” That vision led him to take on multiple leadership roles and influence the field of AAC in multiple ways. He played a pivotal role in establishing both the International Society for Augmentative and Alternative Communication (ISAAC) and the United States Society for Augmentative and Alternative Communication (USSAAC). Additionally, he chaired the panel for the National Institute on Disability and Rehabilitation Research (NIDRR)’s inaugural Consensus Validation Conference on AAC, advocated for the American Speech-Language-Hearing Association to recognize AAC within the profession’s scope of practice, and served as the first editor for the Augmentative and Alternative Communication journal. In this tribute, we describe David’s diverse and unique contributions to improving the lives of people with communication challenges with a focus on some of his central insights and actions.

Growing Academic Physiatry: The Impact of the Baruch's Grants on Harvard Medical School and Columbia College of Physicians and Surgeons. Part II.

Growing Academic Physiatry: The Impact of the Baruch's Grants on Harvard Medical School and Columbia College of Physicians and Surgeons. Part II.

From Invisible to Visible to Valued: Improving Population Health of People With Intellectual and Developmental Disabilities.

From Invisible to Visible to Valued: Improving Population Health of People With Intellectual and Developmental Disabilities.

Inconsistency in the Definition of Urinary Tract Infection after Intravesical Botulinum Toxin A Injection: A Systematic Review

To more accurately examine the rate of urinary tract infection following onabotulinumtoxinA injection of the bladder we systematically reviewed the literature for definitions of urinary tract infection in studies of onabotulinumtoxinA injections. We assessed the studies for consistency with guideline statements defining urinary tract infections. We systematically reviewed the literature by querying MEDLINE® and Embase®. We included original studies on adult patients with idiopathic overactive bladder and/or neurogenic detrusor overactivity who underwent cystoscopy with onabotulinumtoxinA injection and in whom urinary tract infection was a reported outcome. We identified 299 publications, of which 50 met study inclusion criteria. In 27 studies (54%) urinary tract infection diagnostic criteria were defined with a total of 10 definitions among these studies. None of the overactive bladder studies used a definition which met the EAU (European Association of Urology) criteria for urinary tract infection. Only 2 of the 10 studies on patients with neurogenic bladder used a urinary tract infection definition consistent with the NIDRR (National Institute on Disability and Rehabilitation Research) standards. Definitions of urinary tract infection are heterogeneous and frequently absent in the literature on onabotulinumtoxinA to treat overactive bladder and/or neurogenic bladder. Given the potential for post-procedure urinary symptoms in this setting, explicit criteria are imperative to establish the true urinary tract infection rate following treatment with onabotulinumtoxinA.

Intermittent catheter users’ symptom identification, description and management of urinary tract infection: a qualitative study

ObjectivesTo elucidate the views of intermittent catheter (IC) users regarding urinary tract infection (UTI) symptom presentation, terminology for describing signs and symptoms, the cause of UTI and management strategies.DesignQualitative study...

The reliability and validity of using the urine dipstick test by patient self-assessment for urinary tract infection screening in spinal cord injury patients.

Aims:The aim of this is to evaluate the reliability of the urine dipstick test by patients’ self-assessment for urinary tract infection (UTI) screening and to determine the validity of urine dipstick test.Settings:Rehabilitation Department, Srinagarind Hospital, Thailand.Study Design:A diagnostic study.Subjects and Methods:This study compared the urine dipstick test (index test) with the National Institute on Disability and Rehabilitation Research (NIDRR) criteria (gold standard test) in spinal cord injury (SCI) patients. The urine dipstick test informed positive and negative results. Besides the NIDRR criteria classified as UTI and no UTI. The interrater reliability was measured in the sense of Kappa whereas the validity of urine dipstick test was reported in terms of sensitivity, specificity, positive likelihood ratio (LR) (+LR), negative LR (−LR), positive predictive value (PPV), and negative predictive value (NPV).Results:Out of the 56 participants, the kappa of urine dipstick test for leukocyte esterase, nitrite, and combined leukocyte esterase and nitrite were 0.09, 0.21, and 0.52, respectively. The nitrite urine dipstick test showed the highest sensitivity (90%). The combined leukocyte esterase and nitrite urine dipstick test gave the highest specificity (87%), PPV (60%), NPV (93%), and +LR (5.63).Conclusions:The interrater reliability of combined leukocyte esterase and nitrite urine dipstick test was moderate agreement. The combined leukocyte esterase and nitrite urine dipstick test showed high level of both sensitivity and specificity. The combined leukocyte esterase and nitrite urine dipstick test should be promoted for patients’ self-assessment for UTI screening in SCI patients.

MP26-01 INCONSISTENCY IN THE DEFINITION OF URINARY TRACT INFECTION IN THE SPINAL CORD INJURY POPULATION: A SYSTEMATIC REVIEW

You have accessJournal of UrologyInfections/Inflammation/Cystic Disease of the Genitourinary Tract: Kidney & Bladder II1 Apr 2016MP26-01 INCONSISTENCY IN THE DEFINITION OF URINARY TRACT INFECTION IN THE SPINAL CORD INJURY POPULATION: A SYSTEMATIC REVIEW Laura L. Giusto, Yahir Santiago-Lastra, Michael V. Hughes, Mark MacEachern, and Anne P. Cameron Laura L. GiustoLaura L. Giusto More articles by this author , Yahir Santiago-LastraYahir Santiago-Lastra More articles by this author , Michael V. HughesMichael V. Hughes More articles by this author , Mark MacEachernMark MacEachern More articles by this author , and Anne P. CameronAnne P. Cameron More articles by this author View All Author Informationhttps://doi.org/10.1016/j.juro.2016.02.2938AboutPDF ToolsAdd to favoritesDownload CitationsTrack CitationsPermissionsReprints ShareFacebookTwitterLinked InEmail INTRODUCTION AND OBJECTIVES Urinary tract infection (UTI) is a commonly reported outcome in Spinal Cord Injury (SCI) literature. In the early 1990s, the National Institute on Disability and Rehabilitation Research (NIDRR) consensus conference recommended a standard definition of UTI in the SCI patient utilizing urine culture data, urinalysis and clinical symptoms including fever. Despite this proposed definition, there is considerable variability in the way UTIs are defined in SCI literature. Our aim is to report the inconsistency in UTI definitions in the existing SCI literature. METHODS We performed a systematic review using the Preferred Reporting Items for Systematic Reviews (PRISMA) guidelines. We conducted a query of Embase and Medline, using the medical subject heading terms ′′spinal cord injury′′ and ′′urinary tract infections.′′ We included studies that reported on SCI patients as study subjects and had a UTI outcome reported. RESULTS We identified 1425 publications of which 317 met inclusion criteria. UTI was reported as a primary outcome in 254 (80.13%) of included articles, however only 139 (43.85%) of included studies provided an explicit definition of UTI (Table 1). We encountered eleven different definitions of UTI. Positive urine culture, urinalysis, fever and clinical symptoms defined a UTI in 52 (37.41%) of 139 studies. Despite using these four criteria, most of these studies did not specifically describe using the NIDRR definition of UTI. RCTs were more likely to define a UTI than other study types (X2= 12.77, n=39, p < 0.05). Sixty-four (20.32%) of the included articles were published in urology journals versus non-urology journals. Articles published in urology journals did not have an increased likelihood that UTI would be defined (X2= 0.213, p = 0.65). Articles published after the 1992 NIDDR consensus conference were no more likely to report a definition of UTI (X2= 1.39, p = 0.24). CONCLUSIONS Definitions for UTI are variable and used inconsistently in studies of SCI patients, limiting the reliability of its diagnosis in this population. Despite various proposed definitions over time, there has not been a consistently established definition of UTI in SCI literature. © 2016FiguresReferencesRelatedDetails Volume 195Issue 4SApril 2016Page: e353-e354 Advertisement Copyright & Permissions© 2016MetricsAuthor Information Laura L. Giusto More articles by this author Yahir Santiago-Lastra More articles by this author Michael V. Hughes More articles by this author Mark MacEachern More articles by this author Anne P. Cameron More articles by this author Expand All Advertisement Advertisement PDF downloadLoading ...

Diagnostic performance of urine dipstick test for urinary tract infection screening in individuals with spinal cord injury

Objectives: To determine the diagnostic performance of urine dipstick test for urinary tract infection (UTI) screening in spinal cord injury (SCI) patients. Study Design: A cross-sectional diagnostic study. Setting: Srinagarind Hospital, Khon Kaen, Thailand. Participants: SCI patients with neurogenic bladder. Materials and Methods: This study was a cross-sectional diagnostic study that compared the urine dipstick test (index test) with the National Institute on Disability and Rehabilitation Research (NIDRR) criteria (gold standard test) in SCI patients. The urine dipstick test reported positive and negative results. Moreover, the NIDRR criteria classified participants as patients with UTI and patients with no UTI. The diagnostic performance of urine dipstick test for UTI screening was measured in terms of sensitivity, specificity, positive predictive value (PPV), negative predictive value (NPV), positive likelihood ratio (+LR), and negative likelihood ratio (-LR) and was summarized in percentage with 95% confidence interval (CI). Results: Out of the 77 participants, most of participants were paraplegia (74%). The combined nitrite and leukocyte esterase urine dipstick test showed the highest sensitivity (93%), PPV (79%), NPV (85%), and +LR (2.39), respectively. The urine dipstick test of nitrite gave the highest specificity (69%). The most common uropathogen was Escherichia coli (33%). Conclusion: In SCI patients, the combined positive nitrite and leukocyte esterase urine dipstick test showed the highest sensitivity. The combined nitrite and leukocyte esterase urine dipstick test should be promoted as a screening test for UTI in SCI patients.

Project CAREER: Interprofessional Support to Transition College Students With Traumatic Brain Injuries to Employment

Abstract Date Presented 4/18/2015 Project CAREER is a 5-yr interprofessional development project funded by the National Institute on Disability and Rehabilitation Research (NIDRR). It is designed to improve the employment success of undergraduate students with traumatic brain injury (TBI) through the use of cognitive support technologies (CSTs; e.g., iPads®).

Mortality following Traumatic Brain Injury among Individuals Unable to Follow Commands at the Time of Rehabilitation Admission: A National Institute on Disability and Rehabilitation Research Traumatic Brain Injury Model Systems Study

Severe traumatic brain injury (TBI) has been associated with increased mortality. This study characterizes long-term mortality, life expectancy, causes of death, and risk factors for death among patients admitted within the National Institute on Disability and Rehabilitation Research (NIDRR) TBI Model Systems Programs (TBIMS) who lack command following at the time of admission for inpatient TBI rehabilitation. Of the 8084 persons enrolled from 1988 and 2009, 387 from 20 centers met study criteria. Individuals with moderate to severe TBI who received inpatient rehabilitation were 2.2 times more likely to die than individuals in the U.S. general population of similar age, gender, and race, with an average life expectancy (LE) reduction of 6.6 years. The subset of individuals who were unable to follow commands on admission to rehabilitation was 6.9 times more likely to die, with an average LE reduction of 12.2 years. Relative to the U.S. general population matched for age, gender, and race/ethnicity, these non-command following individuals were more than four times more likely to die of circulatory conditions, 44 times more likely to die of pneumonia, and 38 times more likely to die of aspiration pneumonia. The subset of individuals with TBI who are unable to follow commands upon admission to inpatient rehabilitation are at a significantly increased risk of death when compared with the U.S. general population and compared with all individuals with moderate to severe TBI receiving inpatient rehabilitation. Respiratory causes of death predominate, compared with the general population.

Using rasch motor FIM individual growth curves to inform clinical decisions for persons with paraplegia

A longitudinal retrospective study. To better understand individual-level temporal change in functional status for participants with paraplegia in the National Spinal Cord Injury Database (NSCID), as measured by Rasch Transformed Motor Functional Indepedence Measure (FIM) scores. Multicenter/Multistate longitudinal study across the United States. Non-linear random effects modeling, that is, individual growth curve analysis of retrospective data obtained from the National Institute on Disability and Rehabilitation Research (NIDRR) NSCID. We generated non-linear individual level trajectories of recovery for Rasch Transformed Motor FIM scores that rise rapidly from inpatient rehabilitation admission to a plateau. Trajectories are based on relationships between growth parameters and patient and injury factors: race, gender, level of education at admission, age at injury, neurological level at discharge, American Spinal Injury Association Impairment Scale (AIS) at discharge, days from injury to first system inpatient rehabilitation admission, rehabilitation length of stay, marital status and etiology. On the basis of study results, an interactive tool was developed to represent individual level longitudinal outcomes as trajectories based upon an individual's given baseline characteristics, that is, information supplied by the covariates and provides a robust description of temporal change for those with paraplegia within the NSCID. This methodology allows researchers and clinicians to generate and better understand patient-specific trajectories through the use of an automated interactive tool where a nearly countless number of longitudinal paths of recovery can be explored. Projected trajectories holds promise in facilitating planning for inpatient and outpatient services, which could positively impact long term outcomes.

Community Living and Participation: Embracing the Complexity and Forging Forward

Community Living and Participation: Embracing the Complexity and Forging Forward

Self-Management for People with Multiple Sclerosis

People with multiple sclerosis (MS) must manage the day-to-day effects of the disease on their lives. Self-management interventions may be helpful in this challenge. An international, multidisciplinary consensus conference was held on November 15, 2010, by the University of Washington's Rehabilitation Research and Training Center for Multiple Sclerosis (MS RRTC), with funding from the Consortium of Multiple Sclerosis Centers (CMSC) and the National Institute on Disability and Rehabilitation Research (NIDRR), to discuss the concept of self-management for people with MS. The specific goals of the consensus conference were as follows: 1) review the current research on self-management and related issues in chronic disability and specifically in MS; 2) review optimal research methodologies, outcome measurement tools, program planning frameworks, and dissemination strategies for self-management research; and 3) establish recommendations on the next steps necessary to develop, adapt, and test self-management interventions for people with MS. The consensus conference and this document are the initial steps toward achieving the stated goals. Participants in the consensus conference concluded that it is necessary to: 1) define an empirically based conceptual model of self-management for people with MS; 2) establish reliable and valid self-management outcome measures; 3) use best practices to validate models of self-management interventions; and 4) plan dissemination and knowledge translation of interventions once their effectiveness is established.

Protocol for a Systematic Review: Behavioral, Psychological, Educational, and Vocational Interventions to Facilitate Employment Outcomes for Cancer Survivors

Protocol for a Systematic Review: Behavioral, Psychological, Educational, and Vocational Interventions to Facilitate Employment Outcomes for Cancer Survivors

Introduction to TBI Model Systems issue

The six articles contained within this issue are representative of the work of the 2007–2012 Traumatic Brain Injury Model Systems of Care (TBIMS), a programme funded by the US Department of Education, Office of Special Education and Rehabilitative Services, National Institute on Disability and Rehabilitation Research (NIDRR) since 1987. The TBIMS programme has successfully united rehabilitation centres, which provide comprehensive systems of care for individuals with TBI, into a collaborative network conducting research that ultimately improves the lives of individuals with disabilities, their families and their communities. The research activities of each TBIMS centre includes contributing data to a longitudinal database that contains over 10,000 participants, with the longest follow-up cohort being 25 years post-TBI, conducting collaborative research activities within the TBIMS and performing independent research studies that build upon the strengths of the individual institution and the population that it serves. Complete information about the TBIMS programme can be found at the National Data and Statistical Center for the TBIMS website (www.tbindsc.org) which contains extensive information about the TBIMS centres and the Model Systems Knowledge Translation Center website (www.msktc.org) which contains information about the TBI, Spinal Cord Injury and Burn Model Systems of Care. The TBIMS programme has been instrumental in advancing the evidence-base for TBI-related clinical and community-based service delivery. The 2007– 2012 TBIMS grant cycle’s research activities included 24 independent research projects, four modular studies that built upon the TBIMS national database collection effort as well as inter-TBIMS collaboration and two large-scale collaborative projects which were funded separately by NIDRR. The independent research projects primarily employed a randomized clinical trial study design (n1⁄4 18), with two studies using a questionnaire/correlative approach and the remaining five comprised of neuroimaging, quasi-experimental and secondary data analysis approaches. All of the TBIMS were required to participate in at least one modular project. The four that were selected for the 2007– 2012 grant cycle included a prospective study of the relationship between post-TBI fatigue and insomnia, the natural history of headache after TBI, an exploration of sexuality after TBI and a project determining the feasibility of including geographical identifiers (geo-codes) in the TBIMS national database. Finally, the two large-scale collaborative multi-site projects examined the effectiveness of amantadine in managing post-TBI irritability and aggression and a practice-based evidence study of the effectiveness of rehabilitation interventions on outcomes up to 1-year post-TBI. The articles contained within this issue are reflective of the research sophistication of the TBIMS. Four of the studies are single-site studies which investigate complex topics such as: the impact and genesis of post-TBI irritability on spousal and familial relationships (Hammond et al.); the correlation of pre-treatment use of compensatory strategies on activity limitations and cognitive impairment

State of the Science Conference in Spinal Cord Injury Rehabilitation 2011: introduction

State of the Science Conference in Spinal Cord Injury Rehabilitation 2011: introduction

Common Data Elements for Research on Traumatic Brain Injury: Pediatric Considerations

Traumatic brain injury (TBI) is a significant global health problem, with a notably high incidence in children and adolescents. Despite the prevalence of TBI and the disabilities that often follow, research on which to base effective treatment is limited by several challenges, including but not limited to the complexity and heterogeneity of TBI. Even when rigorous methods are employed, the utility of the research may be limited by difficulties in comparing findings across studies resulting from the use of different measures to assess similar TBI study variables. Standardization of definitions and data elements is an important step toward accelerating the process of data sharing that will ultimately lead to a stronger evidence base for treatment advances. To address this need, recommendations for common data elements (CDEs) for research on TBI were developed through a 2009 national initiative. To ensure that the TBI CDE recommendations are relevant to pediatric populations, the National Institute on Disability and Rehabilitation Research (NIDRR) and the National Institute of Neurological Disorders and Stroke (NINDS) called for a review of the original recommendations. Following the process used for the original initiative, multidisciplinary work groups composed of pediatric TBI experts were formed (Demographics and Clinical Assessment; Biomarkers; Neuroimaging; and Outcomes Assessment). Recommendations for modifications and additions to the original CDEs were developed by the work groups, vetted at a 2010 workshop and further refined in preparation for publication. The pediatric considerations for TBI CDEs are described in a series of articles in this journal. This article describes the efforts leading to this pediatric CDE initiative and the CDE review and development process. It concludes with general recommendations for future iterations of the CDE initiative.

Teaching Medical Students About Disability: The Use of Standardized Patients

Standardized patients (SPs), now a mainstay of the undergraduate medical education experience, are beginning to play larger roles in helping students build competencies to better serve patients who have disabilities, in educating students about the lived experiences of persons with disabilities, and in testing students' understanding of disability-related issues. In this article, the authors discuss several U.S. training programs that involve SPs who have disabilities or SPs who do not have disabilities but who portray patients who do. The authors review the goals of each program (e.g., to provide students with opportunities to gain experience with patients with disabilities), describe their commonalities (enhancing students' interview skills) and differences (some programs are educational; some are evaluative), and summarize the evaluative data of each. The authors also explore the benefits and challenges of working with SPs with disabilities and of working with SPs without disabilities. Finally, they consider the practical issues (e.g., recruiting SPs) of developing and implementing such programs.

Longitudinal Outcome of Patients with Disordered Consciousness in the NIDRR TBI Model Systems Programs

Few studies address the course of recovery from prolonged disorders of consciousness (DOC) after severe traumatic brain injury (TBI). This study examined acute and long-term outcomes of persons with DOC admitted to acute inpatient rehabilitation within the National Institute on Disability and Rehabilitation Research (NIDRR) TBI Model Systems Programs (TBIMS). Of 9028 persons enrolled from 1988 to 2009, 396 from 20 centers met study criteria. Participants were primarily male (73%), Caucasian (67%), injured in motor vehicle collision (66%), with a median age of 28, and emergency department Glasgow Coma Scale (GCS) score of 3. Participant status was evaluated at acute rehabilitation admission and discharge and at 1, 2, and 5 years post-injury. During inpatient rehabilitation, 268 of 396 (68%) regained consciousness and 91 (23%) emerged from post-traumatic amnesia (PTA). Participants demonstrated significant improvements on GCS (z=16.135, p≤0.001) and Functional Independence Measure (FIM) (z=15.584, p≤0.001) from rehabilitation admission (median GCS=9; FIM=18) to discharge (median GCS=14; FIM=43). Of 337 with at least one follow-up visit, 28 (8%) had died by 2.1 years (mean) after discharge. Among survivors, 66 (21%) improved to become capable of living without in-house supervision, and 63 demonstrated employment potential using the Disability Rating Scale (DRS). Participants with follow-up data at 1, 2, and 5 years post-injury (n=108) demonstrated significant improvement across all follow-up evaluations on the FIM Cognitive and Supervision Rating Scale (p<0.01). Significant improvements were observed on the DRS and FIM Motor at 1 and 2 years post-injury (p<0.01). Persons with DOC at the time of admission to inpatient rehabilitation showed functional improvement throughout early recovery and in years post-injury.

State of the Science for Pediatric Rehabilitation Engineering

Over the past 25 years the field of rehabilitation engineering has recognized the need for a specific focus on the technological needs of children with disabilities as those needs often differ from those of adults [2]. Among the important efforts in a number of nations has been the support of a Rehabilitation Engineering Research Center (RERC) on technology for children with orthopedic disabilities by the United States Department of Education. The National Institute on Disability and Rehabilitation Research (NIDRR) earliest RERC on pediatrics influenced national rehabilitation policy and had a significant impact on the ‘Tech Act’ legislation of the early 1990s [13]. The NIDRR shifted the focus of this RERC in 1990 from leading the creation of technology service infrastructure to conducting research and development in the area of prosthetics and orthotics for children with orthopedic disabilities. The legacy of the Rancho Los Amigos RERC over its three funding cycles from 1990 to 2005, is now seen in a large number of commercially available products that meet the needs of children. Later, the NIDRR again shifted the focus of its pediatric RERC to newly emerging issues, and awarded this RERC on Technology for Children with Disabilities to our partnership between New Jersey Institute of Technology and the Childrens’ Specialized Hospital. We introduced the blending of emerging biomechanics, neuroscience and cognitive science with new therapeu-