Severely Disabled Research Articles

Can severe language disability be identified in three‐year‐olds? Evaluation of a routine screening procedure

This study evaluates the predictability of a new language screening procedure in 3‐y‐olds. It is used in several Child Health Centres (CHC) in Sweden and has the character of a field study involving more than 60 CHC nurses. The main questions concern the (i) development in 3‐y‐olds assessed as severely language delayed and (ii) whether there are any earlier unknown severely disabled children identified at 4 y of age. Ninety‐six percent of the original study population participated in the follow‐up. The calculations are based on results from 2237 children. A well‐established screening routine, which has been shown capable of predicting the risk of not being able to follow expected schooling, and case records were used as an acceptable proxy outcome measure, pending a better gold standard. In the group of severely disabled 3‐y‐olds, sensitivity, specificity and positive predictive values were 86, 99 and 43%, respectively. Finally, three false‐negatives were identified. In light of the present results, continued application of the 3‐y screening is discussed.

Can Young Severely Disabled Patients Regain the Ability to Walk Independently More than Three Months after a Stroke?

Can Young Severely Disabled Patients Regain the Ability to Walk Independently More than Three Months after a Stroke?

Designing a Community Study of Moderately to Severely Disabled Older Women: The Women's Health and Aging Study

PURPOSE: This paper reports on the design of a community-based study focusing on the effects of prevalent and incident disease and other modifying influences, on changes in functioning among moderately and severely disabled elderly women over a 3-year period [the Women's Health and Aging Study (WHAS)]. METHODS: An approach to conceptualizing and assessing disability which captured functional difficulty across a broad range of activities and tasks was developed, tested on existing national data, and used, in the form of a brief screening instrument, to identify moderately to severely disabled elderly women in a large community sample representative of women 65 and older. Women meeting study criteria were recruited for a baseline interview, a 3-hour in-home clinical exam, as well as follow-up interviews and physical performance tests at 6-month intervals for three years. RESULTS: Prevalence of moderate to severe disability among the screened population proved similar to that expected from analysis of national data (about one-third). The screening interview response rate was 78%, and 71% of women eligible by disability criteria participated. Only women completing both the baseline interview and clinical exam were counted as respondents. Analysis of characteristics of participants and nonparticipants indicated no selection bias related to levels of disability. However, education, race, and age were associated with participation. Women with some college education, black women, and younger women were more likely to participate. CONCLUSIONS: The approach used to identify and recruit moderately to severely disabled elderly women in the WHAS is both feasible and applicable to other community-based research where inclusion of elderly people with moderate to severe disability across several areas of functioning is an objective. Other aspects of study design, such as use of proxy respondents, will also affect recruitment of individuals with impaired functioning into epidemiologic studies.

Assessing quality of life in persons with severe neurological disability associated with multiple sclerosis: The psychometric evaluation of two quality of life measures

Objectives. To examine the psychometric properties of two conceptually different quality of life (QoL) measures, the SEIQoL‐DW (a person‐centred measure) and the SF36 (a health‐based measure), in a severely disabled population of individuals with multiple sclerosis (MS). Design. A factorial repeated measures design was used. Method. The two QoL measures were administered at baseline to 30 individuals with MS at the Royal Hospital for Neuro‐disability, Putney; participants were aged between 20 and 65 years and selected on the basis of their communication ability, years since diagnosis and extent of physical disability (using EDSS ratings). Administration of the SEIQoL‐DWand the SF‐36 was repeated on five fortnightly occasions on a subset of 22 participants 10 months after baseline. On each of the five re‐test occasions, participants also rated their QoL ‘today’ and ‘generally’ on visual analogue scales, and reported significant positive/negative life changes that had affected their QoL. Results. The SF‐36 was more reliable by traditional re‐test standards than the SEIQoL‐DW, but several floor and ceiling effects were observed. Only the SEIQoLDW was significantly related to QoL today (average correlation 0. 52) and QoL generally (average correlation 0. 52) (p < .05) ratings and analyses using ANOVA suggested that the measure was also more sensitive to life changes reported (F (2, 36)= 7. 57, p <. 01). Conclusion. The SEIQoL‐DW is recommended as a suitable person‐centred measure for use with the current population, because it appears to have good face validity and is capable of reflecting individual reports of life change between assessments. It has potential use in other severely disabled samples who obtain low scores on health‐based measures because of their physical status, providing a more holistic view of individual QoL than the SF‐36.

Coimpairments: strength and balance as predictors of severe walking disability.

Little information is available on the joint effects of multiple impairments (coimpairments) on the risk of disability. Our aim was to study the joint effects of strength and balance impairments on severe walking disability. The data are from the baseline of the Women's Health and Aging Study (WHAS), a study of moderately to severely disabled women. A total of 1,002 women aged 65 and older participated in the tests, which took place in their homes. Severe walking disability was defined as self-reported inability to walk one-quarter mile and customary walking speed in a 4-meter test of < or =0.4 m/s. Balance was measured as an ability to hold progressively more difficult stands (feet side-by-side, semitandem and tandem stands). Maximal knee extension strength was measured using a hand-held dynamometer. There were 129 women who were severely walking disabled but able to walk at least minimally. In logistic regression analysis, balance and knee extension strength were independent predictors of severe walking disability. To study the combined effects, nine groups were formed on the basis of strength tertiles by balance categories in the entire population. In the best balance category, the crude prevalences of severe walking disability were 1.2%, 4.9%, and 14.3% in the highest to lowest strength tertiles. In the middle balance category, the rates were 2.9%, 10.0%, and 45.4.1%, and in the poorest balance category 4.9%, 22.1%, and 42.6%, correspondingly. The age, body weight, and height-adjusted odds ratios (OR) showed that the risk of severe walking disability in the subgroup with best balance and strength was less than 5% of the risk in the subgroup with poorest balance and strength (OR .034, 95% confidence interval [CI] .007-.166). Correspondingly, in the subgroups with poorest strength and best balance (OR .097, 95% CI .025-.38) or poorest balance and best strength (OR .102, 95% CI .012-.866) the risk was about 10%. The age-specific estimates of prevalence of severe walking disability in women were: 2.0% for ages 65-74 years, 3.4% for ages 75-84 years, and 9.1% for ages 85 years and older. The burden of coimpairments seems to be greater than the sum of single impairments involved. An effective way to reduce severe disabilities could be prevention of coimpairments.

Integrated control of MANUS manipulator and wheelchair enhanced by environmental docking

Realisations and concepts are presented on the control of the MANUS wheelchair-mounted telemanipulator arm by severely disabled persons with few residual functions. Functional aspects are stressed as a basis for technical implementations, with special attention to the ergonomics of interactive control of the manipulator-wheelchair system in unstructured human environments. Adaptability of the control is accentuated, both with respect to abilities and impairments of the individual user and with respect to characteristics of the environment and the task to be executed. Some methods to improve adaptability are discussed, and the need for standard interfacing methods is underlined. Control configurations in actual daily use by persons with different severe disabilities are presented in some detail. A first implementation of integrated chin joystick control of MANUS manipulator and electric wheelchair, in daily use by a person with a C4/C5 spinal cord lesion, is reported as an example.

Public preferences for prevention versus cure: what if an ounce of prevention is worth only an ounce of cure?

The belief that small preventive efforts bring large benefits may explain why many people say they value prevention above all other types of health care. However, it often takes a great deal of preventive medicine to prevent a bad outcome. This study explores whether people value prevention or cure more when each brings the same magnitude of benefit and examines whether preferences for prevention or cure vary according to the severity of the disability of the patients who can receive the preventive or curative intervention. 289 prospective jurors were presented with a policy dilemma involving how best to allocate funds to benefit people with varying levels of disability. Each project was said to influence the functional ability of 100 nursing home residents, either by improving their level of function or by preventing their level of function from declining. When given a choice between preventive and curative interventions, more subjects preferred the preventive intervention (37% vs 21%, p=0.002). However, when the strength of people's preferences was taken into account, the preference for preventive interventions was not statistically significant (p=0.135). With both preventive and curative interventions, the subjects preferred helping patients with more severe disabilities (p < 0.005 for both comparisons). This preference for helping more severely disabled patients did not differ for prevention and cure (p=0.663). When the magnitude of benefit was held constant, the subjects slightly preferred prevention over cure. In addition, they preferred directing limited resources toward those with greater disabilities, regardless of whether those resources were targeted toward prevention or cure. These findings suggest that previously stated preferences for prevention over cure may result from a belief that small efforts at prevention will be repaid by large reductions in the later need for cure.

Dehydration, Delirium, and Disability in Elderly Patients-Reply

In Reply. —Dr Reyes-Ortiz brings to our attention the role that 2 classic geriatric syndromes, dehydration and delirium, may play in the development of disability in older persons. We were actually surprised by the finding in our study that nearly 3% of persons who developed progressive severe disability had dehydration listed as the first hospital discharge diagnosis in the year they became disabled. Indeed, we believe that what we found is only the tip of the iceberg and that the percentage of severely disabled older persons who are hospitalized for dehydration actually is much higher. While dehydration is often the factor that precipitates hospital admission, 1 it usually is not well documented in medical charts, is occasionally misdiagnosed, and only seldom is indicated as the underlying cause of hospitalization in the discharge records. 2 Dehydration is a common problem in older persons because the aging process is often accompanied by a misregulation

Special Education for Students with Disabilities: Analysis and Recommendations

Twenty years ago, the educational rights of students with disabilities were dramatically and firmly established in law and practice. Prior to that time, many students were refused enrollment or special educational services. As recently as 1973, at least one million students were denied enrollment in public schools solely on the basis of their disabilities, and at least two million others were not receiving an education appropriate to their needs. Although every state has provided some form of special education throughout this century, these services were largely at the discretion of local school districts. Only since a federal court case in 1972 and the passage of federal legislation in 1975 have all states been mandated to provide a free, appropriate public education to all students with disabilities. Today, as Parrish and Chambers point out in this journal issue, special education for students with disabilities is the largest categorical program in public schools, costing an estimated $32 billion. Since the passage of Public Law 94-142 in 1975 (later retitled the Individuals with Disabilities Education Act, or the IDEA), the number of elementary and secondary students receiving special education has increased from 3.7 million to 4.6 million, increasing also from 8% to 11% of all students in public schools. According to Parrish and Chambers, the population of students eligible for special education is expected to continue to rise. The IDEA governs the educational rights of individuals from birth to age 21, though only students in elementary and secondary school are addressed in this journal issue. The IDEA allowed access to the public schools for many students who had previously been denied enrollment. The IDEA has also been given partial credit for decreasing the rate of institutionalization of individuals with disabilities. Before the IDEA, many parents had the sole responsibility of meeting all the needs of their severely disabled children 24 hours per day; once schools began to provide extensive services to students with severe disabilities, more families were able to avoid institutionalization. Under the IDEA, states and local districts were given a mandate to provide specialized educational programs to students with special needs, and students and parents were given a mechanism for enforcement of their rights. In a 1989 survey, 94% of parents of students with disabilities agreed that services for these students had improved since the implementation of the IDEA. Yet special education today is widely criticized as expensive, ineffective, inadequately coordinated with regular education, and/or culturally biased. The National Association of State Boards of Education has recommended radical reduction in the size of special education. Special education also has its champions, who argue that many students perform better academically and have better self-esteem when provided with special services, often in a separate setting. This analysis addresses five questions concerning special education under the IDEA: (1) Why are so many students considered disabled? (2) What are the educational needs of students with disabilities? (3) How should appropriate, individualized services be funded? (4) Are the IDEA's procedural protections necessary? (5) Can regular education meet the needs of more students?

Soluble Fibrin and D-Dimer as Detectors of Hypercoagulability in Patients with Isolated Brain Trauma

To test the hypothesis that hypercoagulability after brain trauma was related to the severity of injury and also to outcome, new coagulation markers were used in 20 patients with isolated brain trauma. In addition to routine coagulation tests, soluble fibrin (SF), D-dimer, and antithrombin (AT) levels were assessed. Thirteen of 20 patients had a Glasgow coma score (GCS) of < or = 7 on admission and severe disability (SD) or worse on the Glasgow outcome scale (GOS). Eight patients had a very bad outcome [GOS = dead (D) or vegetative (V)]. All patients had increased SF levels (ref. < 15 nmol/L) at admission. Six patients with SF < 50 nmol/L had a good outcome with moderate disability (MD) or better. Patients with increasingly higher SF levels had a worse outcome: Three of five patients with SF 50 to 150 nmol/L were severely disabled (SD) or worse; four of six patients with SF > 150 nmol/L remained vegetative (V) or died (D). Four of the six patients with the highest D-dimer levels at admission remained vegetative (V) or died (D). Six of 13 patients with a significant drop in AT levels had a bad outcome (D or V) whereas only two of seven patients without AT consumption did poorly. Routine coagulation studies were often pathologic, i.e., reduced platelet count, but there was no relation to outcome. Increased SF and D-dimer levels at admission followed by a secondary decrease in AT concentration and platelets seem to be good markers of the posttraumatic hypercoagulation often seen after brain injury.(ABSTRACT TRUNCATED AT 250 WORDS)

Psychosocial adjustment of post-poliomyelitis ventilator assisted individuals.

The effect of severe disability, tracheostomy, and ventilator use on psychosocial functioning, gainful employment, life satisfaction, and perceived well-being were studied for a population of 395 ventilator assisted post-poliomyelitis individuals (PVAIs). Standard psychosocial survey instruments and other general questioning were used. Two-hundred-seventy-three physically intact health care professionals served as controls. They were surveyed about their own life satisfaction and perceived well-being and were asked to judge how severely disabled ventilator assisted individuals would respond to such questioning. The relative distress associated with ventilator use was also evaluated in a similar manner. Fifty six of 380 responding PVAIs (14.7%) expressed dissatisfaction with their lives in general. This compares with 8.5% of the controls and 7% of a previously studied general population. The controls significantly underestimated the patients' life satisfaction and well-being scores and significantly overestimated the relative hardship associated with ventilator use. The post-polio individuals using noninvasive methods of assisted ventilation were also significantly more satisfied with their lives than were those ventilated via tracheostomy. Fifty-seven of 148 (39%) individuals married and 165 of 395 (42%) individuals were gainfully employed during long-term ventilator use. We conclude that many severely disabled post-poliomyelitis ventilator users lead productive lives. The vast majority have a positive affect and are satisfied with life. Noninvasive ventilatory support alternatives may lend to greater life satisfaction for these individuals than ventilation delivered via an indwelling tracheostomy. Health care professionals may significantly underestimate their patients' satisfaction with life and this may have a bearing on patient management.

Toward a practical mobile robotic aid system for people with severe physical disabilities.

A simple, relatively inexpensive robotic system that can aid severely disabled persons by providing pick-and-place manipulative abilities to augment the functions of human or trained animal assistants is under development at Rice University and the Baylor College of Medicine. A stand-alone software application program runs on a Macintosh personal computer and provides the user with a selection of interactive windows for commanding the mobile robot via cursor action. A HERO 2000 robot has been modified such that its workspace extends from the floor to tabletop heights, and the robot is interfaced to a Macintosh SE via a wireless communications link for untethered operation. Integrated into the system are hardware and software which allow the user to control household appliances in addition to the robot. A separate Machine Control Interface device converts breath action and head or other three-dimensional motion inputs into cursor signals. Preliminary in-home and laboratory testing has demonstrated the utility of the system to perform useful navigational and manipulative tasks.

Cardiovascular regulation of bedridden patients with severe physical disabilities to orthostatic stress and lower body negative pressure

The purpose of this investigation was to identify the cardiovascular response to an orthostatic tolerance test in severely disabled patients during prolonged recumbency in a sitting position and under lower body negative pressure. The disabled subjects were categorized into three groups according to the degree of their exposure to gravitational stress in daily living and their past history of posture and motor ability. The members of one group (ST1) were now supported in a sitting position during present daily living and were able to sit or stand independently in the past. The subjects in the second group (ST2) were never able to sit or stand independently but were also supported in an orthostatic posture during daily living as were ST1 group members. The third group (BR) was bedridden fully from birth and had no experience, ever, of orthostatic forces during daily living. A marked decrease in photoplethysmogram of the big toe in the change from the resting supine to the sitting condition, which represent...

Age, pattern of consultation, and functional disability in elderly patients in one general practice.

To examine how functional disability varies with sex, age, and other variables in patients aged 75 and over living in the community and to ascertain whether a statistical model derived from the variables in this population usefully predicted functional disability in another of similar age. Retrospective study of data collected by interview and by examination of medical records. An urban general practice with five partners and a list of 15,000 patients, very few of whom belonged to ethnic minorities. 775 Patients (252 men, 523 women) aged 75 and over living in the community between September 1985 and August 1986; 13 other patients considered to be unsuitable and 14 who declined an interview were excluded. Also 94 patients who became 75 or joined the practice after August 1986. The proportions of fit, partially disabled, and severely disabled (housebound) patients. 90 Men (35.7%) and 128 women (24.5%) were fit, and 27 men (10.7%) and 116 women (22.2%) were housebound; in all age groups women were significantly more likely to be disabled than men. A significant trend towards greater disability was shown with increasing age and, more noticeably, with pattern of consultation when patients were divided into three categories based on the number of times they had attended the surgery and been visited at home over about two years. Statistical models gave the forecast percentage of fit and severely disabled patients for each sex, age group, and pattern of consultation, and a simple scheme was derived to identify from information wholly contained in medical records most of those patients most prone to severe disability. The scheme was verified applying it to a population of 94 elderly patients in 1988-9. Sex, age, and pattern of consultation together provide a quick indication of elderly patients' tendency to severe disability, which can help in screening and in day to day consultations.

A Randomized Trial of Veterans Administration Home Care for Severely Disabled Veterans

This randomized study screened hospital admissions to all wards except Psychiatry and Spinal Cord Injured during a 3-year period to identify 233 severely disabled patients (2 impairments on the Katz Index of ADL) and caregivers who were willing to participate in a pretest-multiple posttest trial of the Hines VA Hospital-based Home Care (HBHC) Program. Patient functional status, morale, and satisfaction with care were measured at baseline, 1 month and 6 months post discharge. Caregiver satisfaction and morale were assessed at the same time periods. All health care services used by both groups were tracked over the 6-month period and converted to cost. Findings include improved 1-month satisfaction with care (P = 0.04) and improved 6-month cognitive functioning (P = 0.04) among HBHC patients and improved 1-month (P = 0.04) and 6-month satisfaction with care (P less than 0.01) among their caregivers. A nonsignificant 10% decrease in net cost of care, was found in the treatment group, largely due to lower use of private sector hospital care.

Improved outcome prediction based on CSF extrapolated creatine kinase BB isoenzyme activity and other risk factors in severe head injury.

The present study of 43 patients with severe head injury shows that outcome prediction can be markedly improved by combining an appropriate marker of the degree of initial brain damage and other risk factors. The patients were classified into three groups according to their actual outcome after 6 months: death (22 patients); persistent vegetative state or severe disability (eight patients); and moderate disability or good recovery (13 patients). By applying stepwise logistic discriminant analysis to the patients' data, five significant risk factors were selected: degree of neurological damage assessed by cerebrospinal fluid (CSF) extrapolated creatine kinase BB isoenzyme activity, Glasgow-Liège Coma Scale score, age, incidence of thoracic injury, and intracranial pressure (ICP). Extrapolated creatine kinase BB activity had the highest prognostic ability (67%). Uncontrollable elevated ICP proved to be systematically associated with death, whereas its absence was not necessarily indicative of a favorable outcome. The combination of the five variables yielded a total prognostic efficiency of 91%. The percentages of correctly predicted patients for the three outcome groups were, respectively, 100%, 50%, and 100%. Thus, half of the persistently vegetative and severely disabled patients were identified by the selected factors.

Pregnancy outcome at 24-31 weeks' gestation: neonatal survivors.

All surviving babies of less than 32 weeks' gestation born to mothers resident in the Northern region in 1983 were assessed. No baby was lost to follow up, and 230 long term survivors were assessed when 2 years old, by a single observer. Among 248 neonatal survivors, severe disability was present in 10 of the 37 at 24-27 weeks' gestation (27%) and in 18 of the 211 at 28-31 weeks' gestation (9%). On average the surviving babies required 27 days and seven days of intensive care nursing respectively. Babies who were ventilated for more than two weeks and babies who had neonatal fits had a poor prognosis. Because of postneonatal deaths only 20 of the 230 long term survivors of less than 32 weeks' gestation were severely disabled (9%). Comparable data were obtained for all babies weighing 1500 g or less at birth, irrespective of their gestational age. Severe disability was seen in eight of the 49 neonatal survivors (16%) who had weighed 500-999 g at birth, and in 17 of the 171 survivors (10%) who had weighed 1000-1499 g. The 10 neonatal survivors who had weighed exactly 1500 g at birth were all well. Only 18 of the 212 long term survivors (8%) who had weighed 1500 g or less at birth were severely disabled. Because the period of gestation is the only variable known to the obstetrician before delivery, and disability correlates better with gestation than birth weight, future studies should concentrate on relating morbidity, mortality, and the cost of neonatal care to gestation rather than weight at birth.

Toward understanding the problem in severely disabled readers Part II: Consonant errors

ABSTRACTThe present research was designed to systematically examine consonant errors made by severely disabled readers in an attempt to clarify the nature of their underlying disability. In our first study, three groups of disabled readers were compared to both age- and reading-level matched controls on their performance reading a list of 96 one-syllable nonsense words. As predicted, subjects in all five groups made many more phonetic feature substitutions than orientation reversal substitutions. This is consistent with previous work indicating that reading errors typically result from linguistic- rather than visual-processing difficulties. Further, subjects from all three reading disabled groups, but not from the control groups, made more consonant addition errors than any other error type. A qualitative, post-hoc analysis of the errors suggested that these additions were quite systematic for the reading disabled subjects. The second study was designed as a replication and extension of the first. Results were consistent with those obtained in Study 1. These results are discussed with reference to the possible underlying cause(s) of severe reading disability.

Activated suppressor cell function in severely disabled patients with multiple sclerosis

Defective suppressor cell function has previously been demonstrated in patients with multiple sclerosis (MS) with progressive disease and moderate degrees of disability. In the present study activated suppressor cell function was assessed in patients with documented progressive disease who, at the time of study, had experienced severe disability (Kurtzke score greater than or equal to 6.5) for at least 2 years. We found that mean suppressor levels were significantly increased in this patient group compared with the suppressor levels in the MS patient group with progressive disease but only moderate disability (Kurtzke score of less than or equal to 6.0 within 2 years of study) (59 +/- 8% vs 19 +/- 7%, respectively, p less than 0.01). The mean value in the latter group was significantly reduced compared with the mean value for normal control subjects (47 +/- 4%, p less than 0.01), a finding consistent with previous reports. The results of this study indicate that suppressor cell function, as measured by our assay system, need not be defective in MS patients who have become severely disabled from the progressive form of the disease. Whether the patients who are now severely disabled from progressive MS passed through a phase of disease associated with the same suppressor defects as found in the progressive patients currently with moderate disability will remain speculative until long-term longitudinal studies are performed.

STYLES OF THINKING AND LITERACY PROFICIENCY FOR MALES DISABLED IN PRINT ACQUISITION

ABSTRACT A difficulty for educators regards the balancing of literacy skills with styles of thinking for students with severe disabilities in print acquisition. These educators who deal with severely disabled readers and writers wish to promote the attainment of concept and content acquisition for their students in light of their poor ability to read content texts and to restructure ideas through writing. The problem becomes more acute as these students advance into high school and are faced with an environment that demands more and more from them in the way of written assignments. The present paper discusses the literacy levels and styles of thinking of such a group of youths and attempts to document their thinking behavior and literacy proficiency in a case study approach conducted over time