Actual Disability Research Articles

Would You Rather: Quantifying TBI Survivor Perceptions of Functional Status via Their Surrogates.

To quantify health utilities of the Glasgow Outcome Scale-Extended (GOSE) states after actual Traumatic Brain Injury (TBI). Recovery after TBI is measured using the GOSE, a validated clinical trial endpoint. A recent public survey quantified the health utilities of some GOSE states after hypothetical TBI as worse than death. However, no health utilities exist for disability after actual TBI. This national computer-adaptive survey followed EQUATOR-CHERRIES guidelines and recruited adult TBI survivors (injury>1y prior) via their available surrogates. Using a standard gamble approach in randomized order, participants gave preferences for post-TBI categorical health states ranging from GOSE 2-8. We calculated median [interquartile range, IQR] health utilities for each GOSE state, from -1 (worse than death) to 1 (full health), with 0 as reference (death, GOSE 1). Of 515 eligible, 298 surrogates (58%) consented and completed the scenarios on TBI survivors' behalf. TBI survivors had a current median GOSE 5 [3-7]. GOSE 2, GOSE 3, and GOSE 4 were rated worse than death by 89%, 64%, and 38%, respectively. The relationship was nonlinear, and intervals were unequal between states, with a bimodal distribution for GOSE 4. In this index study of actual post-TBI disability, poor neurologic outcomes represented by GOSE 2-4 were perceived as worse than death by at least one in three survivors. Similar to previously reported public perceptions after a hypothetical TBI, these long-term perceptions may inform earlier post-TBI shared decision making, as well as help shape value-based research and quality of care. II, Economic & Value-based Evaluations.

Status, problems and directions of improvement of pulmonological care for patients with chronic obstructive pulmonary disease according to the results of multicenter medical and sociological study

An expert analysis of existing organizational approaches at different levels of pulmonological medical care is needed to develop measures to improve pulmonological care for patients with chronic obstructive pulmonary disease. Aims: To conduct a multicenter medical and sociological study among pulmonologists to find priority areas and optimal ways to improve the organization of medical care for patients with chronic obstructive pulmonary disease (COPD). Methods. 181 pulmonologists from 23 regions of the Russian Federation were surveyed. Results. Pulmonologists believe that the actual prevalence (59.7%), disability rate (49.7%) and mortality rate (39.2%) associated with COPD are higher than official statistics in Russia. The most significant problems of the organization of pulmonological care are: defects in the organization of medical care at different levels, including insufficient quality of medical care (95.6%); lower quality of outpatient medical care compared to the inpatient care (p < 0.001); insufficient subsidized drug provision (69.6%); lack of dispensary follow-up (58.1%); insufficient rehabilitation measures (56.4%); diagnostic errors (53.4%); insufficient preventive measures (52.3%); long distance between specialized medical institution and the patient’s place of residence (41.4%); lack of continuum between the pre-hospital and hospital care (39.2%); lack of effective patient routing (37.1%); the high need of the regions in the medical and social programs to reduce morbidity and mortality from COPD (92.8%); insufficient contribution of the medical community to the adherence of COPD patients to prevention, treatment and rehabilitation; inadequate legal framework governing pulmonary care for COPD patients (29.3%). According to 97.7% of pulmonologists, COPD should be classified as a socially significant disease. This will allow for upscaling the programs aimed at prevention of COPD and reduction of the mortality rate and disability rate associated with COPD. Conclusion. The priority direction in the development of pulmonological care in Russia is improvement of regulatory and legal support with the development of more effective approaches to the provision of medical care to patients with COPD at all levels.

Prosthetic Grand Synthesis

Prosthetic Grand Synthesis

Granulocyte activation markers in cerebrospinal fluid differentiate acute neuromyelitis spectrum disorder from multiple sclerosis

BackgroundGranulocyte invasion into the brain is a pathoanatomical feature differentiating neuromyelitis optica spectrum disorder (NMOSD) from multiple sclerosis (MS). We aimed to determine whether granulocyte activation markers (GAM) in cerebrospinal...

IScore, a useful prognostic tool for patients with acute ischemic stroke treated with intravenous thrombolysis: a validation study

Stroke is one of the major causes of disability and mortality worldwide. Up to 30% of individuals who experience stroke die within 30 days, and more than 50% of those who survive will have some degree of disability. There are some predetermining factors based on admission data that could be used to objectively assess the odds of poor outcomes, including the Ischemic Stroke Predictive Risk Score (IScore). To analyze and validate the IScore in patients undergoing intravenous thrombolysis for stroke and compare the results of this predictor with actual death and disability outcomes. In a retrospective study, data were collected from a database housed at the Stroke Unit of the Teaching Hospital of Universidade Federal do Paraná, Southern Brazil. The IScore was applied to admission data from 239 patients, and the results were compared with actual outcomes (death and disability) within 30 days and 1 year after the stroke event. Data analysis was performed using an analysis of the receiver operating characteristic (ROC) curve to determine the sensitivity and specificity of the IScore in the study population. The IScore demonstrated moderate sensitivity and high specificity in patients with stroke who underwent thrombolysis when evaluated after 30 days and 1 year of the event. The IScore can be applied to in stroke patients undergoing thrombolysis; therefore, it may be used as an objective prognostic tool to guide clinical decision-making. Understanding the prognosis of patients in the acute phase can assist clinicians in making the best therapeutic decisions and enable better end-of-life care.

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Public expenditure on disability (PED) in Europe: An efficiency analysis

AbstractDisability concerns all citizens and its public policies are essential for social improvement. Moreover, the increase in life expectancy will lead to most of the population being part of this group. In Europe, public policies have evolved towards the development of the welfare state, although there are significant differences between countries. Thus, this paper analyses the efficiency of public expenditure on disability among EU countries through a DEA analysis and the relation with social welfare models, as well as target values and improvement proposals, by studying the resulting differences as a consequence of their different social policies. The results confirm a limited relation between social welfare models and public administration styles with the efficiency on public expenditure on disability and that the countries should work in two directions: increasing public expenditure on disability (which would reduce the gap between target and actual disability prevalence values), and efficiently managing public expenditure.

Cerebral palsy: comorbidities, the second hidden side

Background: Cerebral palsy (CP) is the most common group of permanent disorders of motor impairment resulting from injury in the developing brain which are accompanied by comorbidities. Moreover, it has been observed that because of physical disabilities, the underlying comorbidities are neglected. The study aimed to assess the co-morbidities in children suffering from cerebral palsy in Kolhapur district.Methods: The cross-sectional study was conducted among children suffering from cerebral palsy and presenting to Department of Paediatrics (n=250), D. Y. Patil Medical College, between October 2018 to October 2019. Detailed history with clinical examination were recorded in a pre-designed performa. The patients were classified according to the physiological and topographical classification. Data was analyzed using R software version 3.6.1. Variables were represented using frequency distribution, (p<0.05).Results: Of the total participants (n=250), male predominance was observed (n=140); with age range of 1-18 years. Common form of cerebral palsy was spastic type (n=140; 56%). Most common type among spastic CP was diplegia (n=96; 38%). Children were suffering from speech abnormality in spastic CP cases (n=65). Among spastic hemiplegic cases all the children were suffering from intellectual disability (n=3).Conclusion: Thus, it can be concluded that the motor impairment in just the top notch, the actual disability is the underlying co morbidities.

Room for (Materiality's) Maneuver: Reading the Oppositional in Guillermo del Toro's The Shape of Water

Room for (Materiality's) Maneuver:Reading the Oppositional in Guillermo del Toro's The Shape of Water David T. Mitchell (bio) and Sharon L. Snyder In an important work of narrative theory regarding oppositional storytelling, Room for Maneuver: Reading (the) Oppositional (in) Narrative, Ross Chambers argues: "For deprivation of the power to speak is most usually not literal: if one excludes infants and animals, and those who are held incommunicado … what is usually meant by the phrase is exclusion from the powerful positions of 'preexisting,' socially derived authority."1 The idea appears as commonsensical enough: [End Page 150] removal of the power to speak usually occurs not in the material sense of being incapable of articulating with a voice but as closure from opportunities to seize narrative authority. Thus, this argument of socially imposed voicelessness enables Chambers to explain how narratives offer a platform for alternative voicings of marginalized experience that work to achieve "shifts in [the domain of] desire" in order to inaugurate alternative futures of investment in devalued lives.2 Our argument here moves alongside Chambers's argument regarding the provision of "narrative oppositionality" as an alternative space from which to speak experiences of social devaluation.3 Yet we also intend to extend the parameters of narrative theory— and media studies—to include materially voiceless subjects that Chambers could envision only as exceptions to the rule organized around participants who are infant(ilized), animalized, or otherwise "held incommunicado." Further, our argument works alongside recent film studies analyses of the politics of the audio track, specifically the authority of voice-over to externalize the otherwise suppressed interiority of voiceless subjects.4 Rather than "give voice" to voiceless subjects in a humanist mode that overvalues spoken communication as a most valued possession of embodiment, we argue that neo-materialist modes of storytelling offer other avenues for valuing the alternative capacities of nonnormative subjects, particularly human and nonhuman animals. Bodies that might be enlisted among those that are materially "incommunicado" include the mute disabled protagonist Elisa (Sally Hawkins) and the warbling amphibian figure (Doug Jones) who populate the 2017 Academy Award-winning film by Guillermo del Toro, The Shape of Water. All of Chambers's categories of exceptional (i.e., literal) voicelessness are on display in this fantasy universe to materialize the deprivation of the power to speak for those occupying "peripheral embodiments."5 Whereas voicelessness is often regarded as a metaphor for political powerlessness, we foreground actual communication disability as a way to explore a more phenomeno-logical representational strategy at work in the film. In The Shape of Water, representations of speech communication prove innovative in their deployment of a neo-materialist approach to disability. Neo-materialism involves an encounter with the more "lively agential realism" of matter that counters the tendency to discount forms of embodiment as passive, inert surfaces awaiting ideological imprinting, as is often the case in social constructivist-based readings.6 First, the protagonist, Elisa, is a woman who [End Page 151] literally cannot vocalize her thoughts because her communication "disorder" (i.e., muteness) leads her to use sign language as an alternative pathway for expression. For example, in one scene the head of security at the OCCAM Aerospace Research Facility (her place of employment), Colonel Richard Strickland (Michael Shannon), sexually threatens Elisa in the infantilizing language of patriarchy: "You're not much to look at. When you say you're mute, are you silent entirely or do you squawk a little? I don't mind those scars or that you can't speak either. Kind of gets me going."7 For Strickland, muteness represents an inferior characteristic of voicelessness that is also a sexual turn-on, as Elisa would not be able to articulate refusal; yet the first two forms of objectification also position her as a child, one he can easily control beneath the patronizing tutelage of government-based, paternalistic oversight. In this exchange Strickland references Elisa as desirably incommunicado, sexually exploitable, and thus deserving of her minimum-wage employment as one of the "shit cleaners" at OCCAM. What Chambers might analyze as the political silencing of femininity by heteronor-mative aggression surfaces in Elisa's experience of voicelessness, an inability to talk...

Disability Determination Under Social Security: Increasing Rates of Approval.

Supplemental security income (SSI), is the lifeline for our patients living in the community. Absent disability benefits most of our patients are homeless. Many will be hungry, poorly clothed, and have only rudimentary health care. The disability determination system will approve disability for <30% of those adults making an initial application. The rate of actual disability is much higher. A large cohort (n = 251) of likely disability applicants had comprehensive diagnostic evaluations. These evaluations revealed extensive co-occurring psychiatric symptoms and features, particularly obsessive-compulsive features. Recognition and appreciation of the burden of co-occurring conditions leads to a robust increase in approval rates. Administrative or structural features of the disability determination system also depress allowance rates.

Modernizing the Ssdi Eligibility Criteria: A Reform Proposal that Eliminates the Outdated Medical-Vocational Grid

The Social Security Disability Insurance (SSDI) program, designed to assist individuals unable to work because of permanent disability, has grown substantially over the past 10 years. We document this growth, adjusting for the changing demographics of the US population, and find that the program is covering a higher percentage of the workforce over time despite the fact that actual disability rates are falling. We explain that the medical-vocational grid guidelines that are used to determine whether someone is disabled are an important part of the explanation for increased disability awards. The grid applies much looser standards for applicants as young as 45 and 50. We propose that age be eliminated as a deciding criterion, as well as language ability and education level. We also note that the guideline's list of impairments is outdated and needs to reflect a modern workforce that has access to remedying medical technologies.

Tobacco industry attempts to frame smoking as a 'disability' under the 1990 Americans with Disabilities Act.

Using the Truth Tobacco Industry Documents Library and Congressional records, we examined the tobacco industry’s involvement with the 1990 Americans with Disabilities Act (ADA). During legislative drafting of the ADA (1989–1990), the Tobacco Institute, the tobacco industry’s lobbying and public relations arm at the time, worked with industry lawyers and civil rights groups to include smoking in the ADA’s definition of “disability.” Focus was on smoking as a perceived rather than actual disability so that tobacco companies could maintain that smoking is not addictive. Language that would have explicitly excluded smoking from ADA coverage was weakened or omitted. Tobacco Institute lawyers did not think the argument that smokers are “disabled” would convince the courts, so in the two years after the ADA was signed into law, the Tobacco Institute paid a lawyer to conduct media tours, seminars, and write articles to convince employers that hiring only non-smokers would violate the ADA. The ultimate goal of these activities was to deter employers from promoting a healthy, tobacco-free workforce and, more broadly, to promote the social acceptability of smoking. Employers and policy makers need to be aware that tobacco use is not protected by the ADA and should not be misled by tobacco industry efforts to insinuate otherwise.

Spreading Blame For Prescription Drug AbuseDrug Dealer, MD: How Doctors Were Duped, Patients Got Hooked, And Why It’s So Hard To Stop By Lembke Anna Baltimore (MD) : Johns Hopkins University Press , 2016 192 pp., $19.95

Spreading Blame For Prescription Drug AbuseDrug Dealer, MD: How Doctors Were Duped, Patients Got Hooked, And Why It’s So Hard To Stop By Lembke Anna Baltimore (MD) : Johns Hopkins University Press , 2016 192 pp., $19.95

Inter-rater agreement in evaluation of disability: systematic review of reproducibility studies

Objectives To explore agreement among healthcare professionals assessing eligibility for work disability benefits.Design Systematic review and narrative synthesis of reproducibility studies.Data sources Medline, Embase, and PsycINFO searched up to 16...

Disability, depression and suicide ideation in people with multiple sclerosis

IntroductionDepressive symptoms occur frequently in people with Multiple Sclerosis (MS) and rates of suicide ideation are higher than the general population. There is evidence for a direct association between disability and depression, disability and suicide ideation, and depression and suicide ideation in MS. However, the relationship between all three, i.e. the mediating role of depression between disability and suicidal ideation, has not been investigated. Exploring this relationship could highlight risk factors, alerting clinicians to the need for timely intervention. MethodSeventy five people with progressive MS attending two out-patient clinics took part in this cross-sectional study. Participants completed the Beck Suicide Scale, Beck Depression Inventory, Multiple Sclerosis Impact Scale and Guy’s Neurological Disability Scale. ResultsDepressive symptoms mediated the relationship between perceived and actual disability and suicide ideation. Different types of disability were associated with suicidality, including: ‘tremors’ and ‘taking longer to do things’. A small sub-group of participants were identified who reported suicide ideation in the presence of only mild levels of depression. LimitationsThere may be a sample bias in this study as all participants were attending out-patient clinics and receiving support which may not be available to everyone with MS. ConclusionIt is important for clinicians to screen regularly for both depression and suicide ideation, to be alert to specific types of disability for which a higher level of suicide ideation might be present and to consider the possibility of suicidal thoughts being present in people who show minimal or no depressive symptoms.

The Effect of Disability Payments on Household Earnings and Income: Evidence from the SSI Children's Program

Abstract I estimate the effect of removing children with disabilities from Supplemental Security Income (SSI) on parental earnings and household disability receipt. Using administrative data from the Social Security Administration (SSA), I implement regression discontinuity and differencein- differences designs based on changes in SSA's budget for child medical reviews. I find that parents fully offset the SSI loss with increased earnings, and the loss of the child's SSI payment reduces disability applications by parents and siblings but does not reduce their actual disability receipt. I examine alternative hypotheses for the large parental earnings response.

MRI and neurophysiological measures to predict course, disability and treatment response in multiple sclerosis.

The expanding portfolio for multiple sclerosis treatment, together with the consensus that neurodegenerative processes occur since the early disease phases, has increased the need for paraclinical tests with prognostic value on disease evolution and treatment response. On the one hand, we face the development of MRI technology, from lesion detection, to global and regional volumetric measures, to tissue damage quantification within brain and spinal cord lesions and in normal appearing tissue, together with increased knowledge about their application. On the other hand, traditional neurophysiological techniques, such as evoked potentials, are being recently analyzed with a quantitative approach allowing us to reveal their correlation with actual and future disability, and are being complemented by more recent technical advancements, such as multifocal visual evoked potentials and optical coherence tomography, for the assessment of demyelination/remyelination and axonal loss, respectively. The increased value of MRI and neurophysiological tools in predicting disease evolution and treatment response will impact the therapeutic management of multiple sclerosis, from the choice of the first treatment to the type and frequency of monitoring toward a tailored, time-adapting treatment approach.

What are we telling the parents of extremely preterm babies?

Parent counselling and decision-making regarding the management of preterm labour and birth are influenced by information provided by healthcare professionals regarding potential infant outcomes. The aim of this study was to determine whether perinatal healthcare providers had accurate perceptions of survival and major neurosensory disability rates of very preterm infants born in non-tertiary hospitals ('outborn') and tertiary perinatal centres ('inborn'). A web-based survey was distributed to midwives, nurses, obstetricians and neonatologists working in non-tertiary and tertiary maternity hospitals, and the perinatal/neonatal emergency transport services in Victoria, Australia. Estimates of survival rates at 24 and 28-weeks' gestation were compared with actual survival rates of a population-based cohort of 24 and 28-weeks' gestation infants, born free of lethal anomalies in Victoria in 2001-2009. Estimates of major neurosensory disability rates in 24 and 28-week survivors were compared with actual disability rates in 24 and 28-week children born in Victoria averaged over three eras: 1991-1992, 1997 and 2005. Response rates varied as follows: 83% of non-tertiary midwives, 4% of obstetricians, 55% of tertiary centre staff and 68% of transport team staff responded (total of 30%). Overall, respondents underestimated survival and overestimated major neurosensory disability rates in both outborn and inborn 24 and 28-week infants. Outborn infants were perceived to have much worse prospects for survival and for survival with major disability compared with inborn peers. Many clinicians overestimated rates of adverse outcomes. These clinicians may be misinforming parents about their child's potential for a favourable outcome.

Transitions Into and Out of Census Disability

Abstract This paper examines disability as measured and reported in three Census surveys: the American Community Survey (ACS), the Current Population Survey (CPS), and the Survey on Income Program Participation (SIPP). We focus on whether person-specific disability, as measured by the Census, is a permanent or a transitory condition. Survey data results regarding the incidence of Census-measured disability are shown both cross-sectionally and longitudinally. It is found from longitudinal CPS and SIPP responses that Census-measured disability is largely transitory. That finding empirically confirms the longstanding theoretical objections to the use of Census cross-section disability data along with a permanent disability assumption in worklife expectancy models; hence, any worklife expectancy model which assumes that Census disability measures are permanent conditions is misspecified and empirically invalid. Instead of using the permanent disability assumption, we use actual longitudinal disability transition probabilities and life table analysis to quantify the lifetime duration of disability as measured by the Census in total life years and working life years. We show that the realistic feature of disability transition dramatically lowers the effect of disability on worklife expectancy.

Models of disability support governance: a framework for assessing and reforming social policy

In many developed countries, the provision of disability services has undergone significant transformations, from institutional to community based care, and from oganisational to personalised funding. Yet delivering disability support remains an ongoing challenge for governments. Specifically, the relative success of different types of disability support governance is convoluted and problematic given the diversity and complexity of disability support systems and the people they serve. To enhance the systematic analysis and evaluation of disability support governance, this paper conceptually advances four distinct models based on the locus of control and coordination of such support: uncoordinated; casework governance; dwelling‐based governance; and user‐coordinated. Using illustrations from case studies of individuals receiving care, the identification of these ideal types enables their relative strengths, weaknesses, and the occasions of governance failure to be articulated. No one model is universally applicable to people, nor immune to failure. Furthermore, the paper presents a novel approach to visualising actual disability support arrangements as social networks. The utility of such visualisations for analysing individual and system‐ wide arrangements is outlined. In the context of Australia's developing National Disability Insurance Scheme, these conceptual and analytical developments are argued to be important tools for policy and service analysis and reform.