The aim of this study was to describe how persons with learning disabilities conceived their opportunities to participate in decisions in different environmental settings. Further, the study focused on factors that persons with learning disabilities conceived what facilitated or hindered their participation in decisions in everyday life.
Qualitative interviews were performed with 23 persons with mild to moderate learning disabilities. The youngest was 22 years and the oldest 63. Data were categorized in three levels of decision making, described as independent, interdependent and dependent.
The participants were presented in five profiles depending on level of decision and in relation to the environmental arenas work and leisure. Most conceptions were categorized as dependent or interdependent regardless of arena. Few examples of independence were given. Factors that facilitated or hindered participation in decisions varied: national legislation, attitudes, and forms of daily routines and activities.
This study showed a gap between official ideologies of every citizen's rights and the studied participants' conceptions of how they participate in decisions in everyday life. As a consequence of this, professionals have to develop methods promoting decision-making as conceived by the clients.
Validity and reproducibility of the Jamar dynamometer were evaluated in children aged 4-11 years.
Hand grip strength was measured on the dominant side and non-dominant side in 67 patients who had been referred to our specialist centre in the past 3 years because of suspected myopathy. All the patients had had muscle biopsy. Sixteen out of the 67 patients proved to have myopathy, while 51 had no myopathy. The investigator was blinded against the true diagnosis and clinical course of the patients at the time of testing. Validity was assessed by the power to discriminate between patients with and without myopathy, using logistic regression analysis and receiver operating characteristic (ROC) analysis. The area under the ROC curve (AUC) was calculated as a measure of the discriminative power. Sensitivity (Se) and specificity (Sp) were assessed at a specifically chosen cut-off point. Reproducibility was assessed by evaluating the test-retest reliability in a stratified random sample of 40 patients who returned for remeasurements, using the intraclass correlation coefficient (ICC).
AUCs ranged from 0.78 - 0.82. At an Se = 81% cut-off point, Sp varied from 67-73%. ICCs ranged from 0.91-0.93.
The Jamar dynamometer had discriminative power in children with suspected myopathy. Reproducibility was high. The Jamar dynamometer was a good, but not completely accurate, test for myopathy.
Students with disabilities are at risk for poor health outcomes; however, the causes and consequences of injury in this group are not well understood. The epidemiologies of injuries among students with and without disabilities were profiled and compared.
The cross-sectional, 2002 Health Behaviour in School-aged Children Survey, was administered to a representative sample of 7235 students (grades 6-10) from Canada. Students who reported at least one functional difficulty due to a health condition were classified as having a disability. Primary outcomes were: (i) Medically attended injury; (ii) multiple injuries, and (iii) serious injury experiences during a 12-month period.
Some 16.3% of students reported a disability. Injuries were more common in students with disabilities compared to those without disabilities (67% vs. 51% annually, p < 0.01). Students with disabilities experienced 30% increases in the risk for medically attended injury, multiple injury, and serious injury as compared to their peers. Consistent and statistically significant associations (p < 0.05) were identified between different types of disability and all injury outcomes.
Canadian students who report disabilities experience higher risks for injury than their peers, perhaps due to an inability to perceive and avoid environmental hazards. Injury prevention programmes are needed to address these unique risk profiles in order to prevent additional disability or secondary conditions.
To study the influence on pain and handling of different preoperative immobilization procedures for hip fractures.
123 consecutive patients with displaced cervical and trochanteric hip fractures were randomized to skin traction, placement in a special foam pillow (Lasse pillow), and comfortable placement with an ordinary pillow under the hip from admission to operation. The effect on pain alleviation was evaluated with a Visual Analogue Scale and by the number of doses of analgesics administered. The processing time through the emergency department, X-ray department and to the ward as well as time to operation was registered.
No clinically significant difference in the VAS pain evaluation was found. There was no difference in the total consumption of analgesics in the emergency department or on the ward and no effect of immobilization type on the processing time or time to operation. Fracture type did not affect the outcome. Approximately one third of the patients found placement on a regular pillow or the application of skin traction uncomfortable as opposed to only one of 19 of the patients lying in the special Lasse pillow. There was no other difference in processing time with regard to different forms of pillow nursing and skin traction.
The most convenient immobilization should be chosen as there is no significant difference concerning pain and handling time. Increased attention to analgesic medication and rapid handling to be operated are of importance to promote the rehabilitation process.
To describe communication and eating proficiency and related factors in Swedish females with Rett syndrome, from a parental/caregiver view.
Data from a questionnaire were used and approached descriptively, qualitatively and comparatively. Parents/caregivers of 125 females with Rett syndrome completed the survey. The mean age of the females was 19.6 years.
Communication: expressive language was limited and the most common way of expressing will was by producing motor acts, 50% of which were higher level of language (eye- and finger-pointing and gestures). Results also showed communicative behaviour was demonstrated during social activities. Eating proficiency: For eight specific types of eating difficulties, the majority of the females suffered from none, one or two of them. There were significant associations of some specific eating difficulties with breathing dysfunctions and food consistency, but not with dental or oral problems.
Results from this study have confirmed that verbal communication in Rett syndrome is limited. Despite a lack of verbal communication the females in this study were reported to need and enjoy social interplay. Outcomes concerning eating were generally good. For optimal intervention, it is recommended that family and professionals work together to evaluate eating situations and communication ability for females with Rett syndrome.
The aim of this research was to estimate the prevalence of postnatal cerebral infection leading to hemiplegic cerebral palsy (CP) in Stockholm County and to describe the motor impairments, associated impairments and involvement of the non hemiplegic side.
Children with hemiplegic CP subsequent to a cerebral infection in the perinatal period up to the age of seven years were identified. The assessments of child psychologists and speech therapists and EEG-studies, CT-scan or MRI of the brain were extracted from the children's files. Thirteen children, with a mean age of 9.5 years, participated. The prevalence was 0.03/1000.
Nine children suffered from mental retardation, seven took antiepileptic drugs and six had bilateral radiological anomalies. The non-hemiplegic side was involved in six of the children.
Cerebral infection at an early age can cause hemiplegic CP with a high frequency of associated impairments and with involvement of the non-hemiplegic side. The infectious origin probably gives rise to a more widespread brain injury.
To investigate factors associated with post-traumatic growth (PTG) 13 years after severe traumatic brain injury (TBI) and to see if PTG had remained consistent between 11 and 13 years after injury.
TBI survivors (n=21), were interviewed and completed face-to face administration of questionnaires measuring PTG and factors potentially associated with PTG. The design was a longitudinal follow-up study.
Factors significantly associated with PTG included: having a sense of personal meaning (purpose and coherence), high life satisfaction now, social support, high-activity levels, a high number of life events, having paid work, new stable relationships after injury, milder disability, and having religious faith. Having a high level of "purpose" was the best predictor of PTG. There was no change in PTG between 11 and 13 years after injury suggesting PTG is a relatively stable phenomenon once established after the early years.
Clinicians should be aware of PTG and how it is associated with factors such as "meaning" and "purpose" as well as demographic factors such as, social support, activity such as work, new and stable relationships, milder disability and a shift towards spiritual values. Clinicians can focus advice, resource and effort on supporting these developments. [IMPLICATIONS FOR REHABILITATION:• People with TBI do perceive benefits or post-traumatic growth (PTG), after time, which once established remains stable.• Factors such as having a sense of "meaning" and "purpose", are predictors of PTG.• Social support, activity such as work, new and stable relationships, a shift toward spiritual values, and milder disability are also associated with PTG.• Clinicians can focus effort into supporting these developments.]
To describe the motor function and disability of children with postnatal cerebral infection leading to hemiplegia, and to determine the severity of their motor disability.
The disablement process was used to describe these children. Participants included 13 children (7 girls and 6 boys, mean age 9.8 years). Traditional neurological assessment methods, together with the Movement Assessment Battery for Children and Paediatric Evaluation of Disability Inventory, were used. The children's non-hemiplegic sides were also tested. To determine severity of motor disability, new definitions were created that reflected the child's balance and fine-motor ability in relation to expected performance at his or her age.
The children had involvement of the non-hemiplegic leg and arm in all but one case. Balance and hand function was impaired in all. Hypotonicity was present in 10 children, weakness of hip muscles in 9. There was great variation in grip function. Motor difficulties dominated during pre-school years, whereas the dominant problem of all school-age children was social and communication skills. Behavioural, communicative, and chewing and swallowing problems were common.
A postnatal infectious aetiology influences function on both the hemiplegic and non-hemiplegic side. In school-age children, social skills and communication difficulties are more pronounced than motor problems. The results of this study encourage the use of methods standardized for age where force dynamics and quality of movement are assessed.
To explore the role of distress and social support as modifiers of functional disability in rheumatoid arthritis (RA). We hypothesized that: (a) higher inflammatory activity, more joint tenderness and more pain lead to more disability, and (b) that more distress and less social support lead to more disability and accelerate the disablement process by moderating the effects of inflammatory activity, joint tenderness and pain.
The study is a Dutch extension of the European Research on Incapacitating Diseases and Social Support (EURIDISS) which started with 292 patients. After five waves of data collection 129 still participated. Correlational and hierarchical regression analyses were performed.
In short-term RA, 68% of the variance in disability could be explained primarily by mean disability over the prior years. Other important predictors were inflammatory activity and pain. In long-term RA, 56% of the variance in disability could be explained primarily by mean disability over the prior years. Other important predictors were joint tenderness and pain. No clear moderator effects of distress and social support were found in short-term or long-term RA.
The results confirm the main pathway from pathology to disability in short-term and long-term RA, but do not provide support for the influence of distress and social support on the disablement process.
The Everyday Memory Questionnaire (EMQ) was developed as a subjective measure of memory failure in everyday life. Previous studies have investigated the factor structure of the EMQ in both healthy participants and people with multiple sclerosis (MS). The aim of the present study was to confirm the factor structure of the EMQ, to determine the internal consistency and criterion validity of the scale and to develop a shortened version.
A retrospective design, including participants from a study on MS patients and their carers and a study on stroke patients. Psychometric properties of the EMQ-28 were explored, and the measure was further revised from comparative analyses between the clinical and non-clinical groups.
Reliability and factor analysis of the EMQ-28 identified two main factors, general memory and attentional function, showing some concordance with previous research. Further analysis reduced the questionnaire to a 13-item measure (EMQ-R), with two main factors (Retrieval and Attentional tracking), strong internal reliability, and good discriminatory properties between clinical and control groups.
The 28-item questionnaire consistently differentiated between two broad systems of memory and attention, with some differentiation of visual and verbal, or language systems. Results showed some consistency with previous findings. The revised, 13-item questionnaire is a valid and reliable tool that has good face validity for use with neurological patients. Further exploration of the revised EMQ is recommended to provide information regarding its psychometric and clinical properties.
To test the internal consistency and validity of a Swedish translation of the Activities-specific Balance Confidence Scale (ABC) 0-14 days and 3 months post stroke.
37 persons were tested at 0-14 days (median 5 days) post stroke and 31 were retested 3 months later (median 87 days). In addition to the ABC, the Functional Ambulation Categories, modified Rivermead Mobility Index, timed up and go test, 10-meter timed walk, SF-36 and the 12-item Walking Scale were used.
The internal consistency was high at α = 0.94 to 0.97. Kendall correlation-τ coefficients were moderate and varied somewhat depending on time poststroke. At 0-14 days post stroke the highest correlation was found between the ABC and the 12-item Walking Scale (-0.55, p < 0.01). At 3 months poststroke, the correlations with the Functional Ambulation Categories was 0.49 (p < 0.01), timed up and go test -0.43 (p < 0.01), 10-meter timed walk -0.41 (p < 0.01), and modified Rivermead Mobility Index 0.46 (p < 0.01). Divergent validity was established by the non-significant correlation (0.12) between the ABC and SF-36 mental component summary.
The Swedish version of ABC has high internal consistency and is valid for measuring balance confidence in the acute and sub acute phases of stroke.
This study compared health related quality of life (HRQOL) among lumber disc surgery patients to general population, and assessed the relationships between HRQOL and other outcome measures 2 and 14 months after surgery.
The 15D instrument was use to measure HRQOL in 145 lumber disk surgery patients. Subjective outcome was also assessed by the Oswestry index, Short Depression Inventory (SDI) and pain, and objective outcome by trunk muscle strength and mobility of the spine.
The mean (SD) 15D score among the patients 2 months after surgery was 0.880 (0.104) compared to 0.941 (0.076) among general population (p = 0.016). The 15D, Oswestry and SDI scores remained unchanged during the follow-up, while the improvements in the spine mobility and trunk muscle strength were significant. Back pain decreased by 68% and leg pain by 74% from preoperative level to 2 months check-up. Leg pain further decreased during the following 12 months, while back pain remained unchanged. HRQOL was associated with age, pain, Oswestry and SDI indices, but not with physical function.
HRQOL measured by 15D was lower in lumber disc surgery patients compared to general population. 15D was associated with the subjective outcome measures of pain, Oswestry and SDI indices, but not with the objective measures of physical function. Thus, a combination of "disease specific" and "generic" measures is recommended to be used to obtain more accurate information about the overall welfare of individual.
To chart the 3-year course of health-related quality of life (HRQoL) of 9--13-year-old children with cerebral palsy (CP), and to determine its relationship with gross motor abilities and mental health.
Children (n = 91; 58 boys, mean age 11 years, age ranging from 8 years and 6 months to 13 years and 8 months) and parents were assessed annually with the TNO-AZL questionnaires for children's health-related quality of life as a dependent variable, and the gross motor function measure for children with CP and the child behaviour check list as independent variables. Results: The children reported lower HRQoL compared with children in the general population, but reported a higher HRQoL than their parents. The HRQoL remained fairly stable over the 3 years, except for an increase in the autonomy domain. The HRQOL was moderately associated with gross motor abilities, and negatively associated with internalising mental health problems. Externalising problems were only negatively associated with parent-reported HRQoL.
Children with CP are more resilient and positive about their HRQoL than their parents think they are. In general, mental health in children with CP appeared to be important in understanding their perceived QoL, in addition to the severity of the CP itself.
In 1981, a progressive multi-systemic disease called Toxic Oil Syndrome (TOS) appeared in Spain as an epidemic that affected 20,000 people. The International Classification of Impairments, Disabilities and Handicaps (ICIDH) was chosen to characterize the health status of patients more severely affected by TOS.
A random sample of 292 with permanent disability was selected. Disability was assessed with a questionnaire based on ICIDH and the Stanford Health Assessment Questionnaire. Handicap was measured using London Handicap Scale. Distributions of the proportions and 95% confidence intervals for disabilities, handicaps were calculated and stratified by dimensions, age and sex. The chi2 test was used for inter-group comparisons.
Two hundred and fourteen patients were interviewed. Mobility-related and behaviour disabilities were most prevalent. Disability rose with age and was higher among women, except for behaviour disabilities which were more frequent in young men. Mean handicap score was 78.0 +/- 12.7. Handicap dimensions most affected were physical independence and economic self-sufficiency.
The health profile of the population hardest hit by TOS is characterized by the presence of important functional and psychosocial disabilities that limit performance of daily living activities and social role, and are in accord with the handicap that such persons suffer.
To extend knowledge on mental health with children's self-report and explore mental health and health related quality of life (HRQL) in a context of recurrent musculoskeletal pain in cerebral palsy (CP).
Eighty-three participants, mean age 14.2 ± 2.8 years, were assessed with clinical examination, interview and questionnaires. Gross motor function was GMFCS level I 42%, level II 42%, level III 12% and level IV-V 5%. Children self-reported mental health on SDQ (Strengths and Difficulty Questionnaire), HRQL on PedsQL (Pediatric Quality of Life), and pain on CHQ (Child Health Questionnaire). Mothers proxy-reported on the same questionnaires and reported own mental health on GHQ (General Health Questionnaire).
Both self-reported mental health and HRQL was better than proxy-reported. Recurrent musculoskeletal pain was associated with more mental health problems and reduced HRQL in self-reports, but not in proxy-reports.
In CP, the importance of child-report on mental health and HRQL when possible, in addition to parent proxy-report, cannot be overstated. Close co-operation between (re)habilitation and child psychiatry is urgent. Further research on self-reported mental health and impact of mental health problems is warranted together with a focus on the impact of recurrent musculoskeletal pain on participation.
To describe the causes and determine the prevalence of disability from chronic conditions due to injury among US civilian non-institutionalized persons aged 18-69 years.
Data from the National Health Interview Survey Disability (NHIS-D) Supplement Phase I, United States 1994 were analysed and six disability categories were examined: activities of daily living (ADL), instrumental activities of daily living (IADL), functional activities (FA), sight, hearing, and communication.
In 1994, 5.6 million persons aged 18-69 years reported a disability because of a chronic condition that was caused by injury. The prevalence of ADL disability due to chronic conditions caused by injury was 370 per 100000 population; IADL disability was 1256; FA disability was 2512; sight was 231; hearing was 339; and communication was 91 per 100000 population. Fifty per cent of ADL, IADL, and FA disabilities were attributed to motor vehicle crashes and falls, as were 31% of sight, 19% of hearing, and 23% of communication disabilities.
Though these estimates may be conservative, this study indicates that injury is a major cause of disability in addition to a leading cause of death in the US.
To explore participants' experiences of psychosocial adjustment within 18-months following amputation in a manner that can inform further research and clinical practice.
Transcript data from eight semi-structured interviews were analysed using Interpretative Phenomenological Analysis.
Three super-ordinate themes emerged from the analysis: (1) pre-amputation decision-making process and control, (2) renegotiation of self-identity and the struggle to accept a new 'disabled' identity, and (3) adjustment as a social process.
This research furthers understanding of pre-acute, acute and post-acute adjustment processes from the insider-perspective of individuals who have experienced amputation. A picture emerged in which individuals adjusted to amputation and its sequelae through a process of renegotiation of self-identity that was mediated through a wide range of decisional, informational and social factors. Suggestions for clinical practice and further research are discussed.
We describe self-reported consequences for physical and cognitive functions, detect possible gender differences, and find factors that were associated with deteriorated physical function in younger stroke patients, independent in their personal activities of daily life.
This study involved all first ever stroke patients, aged 18-55 years, registered in the Swedish national quality register for stroke. A questionnaire was answered by 1068 patients 8-36 months after the stroke. Changes were sought in physical and cognitive functions as compared with the pre-stroke condition.
Eight hundred and sixty-seven patients (83%) were independent in personal activities of daily life. Significant differences between men and women were found: deteriorated physical ability was reported by 56-71% of the men and 65-79% of the women; deteriorated cognitive function was reported by 48-57% of the men and 57-68% of the women. Many patients (70% men, 77% women) reported that they had received insufficient information about physical exertion. Significant associations were found between deteriorated physical function and deteriorated cognitive function as well as fear of physical exertion.
Deterioration was found in physical and cognitive functions greater in women then in men. Insecurity regarding physical exertion existed indicating that younger stroke patients might need information directly aimed at physical functioning and more gender specific than today. This study has raised the awareness that there also might be gender differences in other fields, which needs further studies.
To develop a test that identified fallers from their turning strategies, as people with Parkinson's Disease (PD) commonly fall turning.
We compared (1) Turn Types demonstrated when turning 180 degrees during the Timed Up and Go Test (TUG Test) by 19 non-fallers and 29 fallers (median age 71) and (2) Turn Types, Turning Steps, Heelstrike, Stability and the Use of Space and Support demonstrated when turning 180 degrees during an everyday activity by 15 non-fallers and 26 fallers (median age 75). Turns were rated from video by observers blinded to group. Inter-observer agreement was tested.
Similar proportions of fallers and non-fallers demonstrated multiple-step Turn Types during the TUG Test (69% v 58%; p=0.433) and the everyday activity (66% vs. 46%; p=0.241). When turning, similar proportions of each group lacked Heelstrike, lost Stability and used the available Space and Support (p>0.7); Turning Step counts were also similar (p=0.891). Inter-observer agreement proved acceptable except for Turn Type during everyday activity (Kappa=0.46).
The anticipated differences between fallers and non-fallers were not identified, perhaps obscured by insufficiently or overly challenging protocols and/or the compensations deployed by fallers. Further methodological development is needed in the analysis of fall-related activities with high-risk groups.
The study compares life and active life expectancy estimates across indicators of socioeconomic status (SES) for a cohort of older adults in the Beijing municipality. Our aim is to determine if associations found are consistent across indicators and with those typically observed in the Western industrialized countries.
A multistate life table method is used to estimate expected years of total and active life, defined as life spent without limitation in functions necessary for performing daily tasks.
We find that men of higher status experience advantages with respect to life and active life expectancies. Among women, only active life expectancy is significantly higher for those of higher status, but the difference by income is not statistically significant. With respect to the proportion of life spent in an active state, both men and women of higher status benefit in comparison to their lower status counterparts. Finally, we find that disparities by SES generally increase with age.
Despite several inconsistencies across SES indicators by gender, findings generally confirm inequalities within a society that is organized very differently socially, economically, and politically from the West.
To investigate the incidence, clinical presentation and associated comorbidities of Angelman syndrome (AS) in Western Australia, with establishment of an information database for the disorder.
Data were collected from Disability Services Commission files, supplemented by datasets provided by the Western Australian Data Linkage Unit. The analysis was retrospective and quantitative.
Thirty-four individuals (two deceased) were identified (19 F, 15 M), with a mean age of 21.6 years; 52.9% had an IQ < 40, with the remainder of IQ 40-69. The incidence was one in 40,000 births and mean age at diagnosis was 5.8 years. The mean age of the 23 home residents was 20.2 years compared to 27.9 years in the nine individuals in sheltered accommodation. In general, the patients exhibited a typical AS clinical presentation. A median of 5.5 (range 0-20) hospital admissions was recorded per person, with epilepsy, gastrointestinal disorders, and dental work all common reasons for admission.
The estimated incidence was low compared to other reports, as was the proportion of IQ < 40. AS cases required substantial levels of medical care, especially those who were epileptic. An increase in the future numbers of AS patients needing sheltered accommodation is predicted.
To benchmark the psychological state and physical rehabilitation of patients who have sustained limb loss as a result of terrorist activity in Northern Ireland and to determine their satisfaction with the period of primary prosthetic rehabilitation and the artificial limb.
All patients who sustained limb loss as a result of the Troubles and were referred to our rehabilitation centre were sent a questionnaire. The main outcome measures were the SIGAM mobility grades, the General Health Questionnaire (GHQ12) and three screening questions for Post Traumatic Stress Disorder (PTSD).
Out of a 66% response rate, 52 (69%) patients felt that the period of primary prosthetic rehabilitation was adequate; 32 (54%) lower limb amputees graded themselves SIGAM C or D; 45 (60%) patients stated that they were still having significant stump pain. Significant stump pain was associated with poorer mobility. Nine (56%) upper limb amputees used their prosthetic limb in a functional way; 33 (44%) patients showed "psychiatric caseness" on the GHQ 12 and 50 (67%) had symptoms of PTSD.
Most patients felt that the period of physical rehabilitation had been adequate; those who did not were more likely to be having ongoing psychological problems. A high percentage of patients continue to have psychological problems and stump pain.
Two samples of 46 schizophrenic patients, one of new attendees at a night clinic in 1971-73 and the other of hospitalized patients matched for age and sex, were followed up 12 years later. Seven of the former and two of the latter had died, all from self-destructive acts. Of the survivors, one-third were rated inconspicuous with regard to psychopathology, one-fifth as conspicuous only to a psychiatrist, and only one-quarter as very conspicuous, even to a layperson. During the first 4 years the night clinic patients showed signs of an insidious chronic course; substantially fewer (17.6% compared with 28.6%) were hospitalized at the time of follow-up, though far more were receiving outpatient or semi-inpatient care. In both samples self-isolation and inadequate rehabilitation for work were marked; 72% and 62% respectively were dependent on a disability pension, and only 15% and 20% were employed at work in keeping with their training and experience. Just under half lived alone, and 30-40% had no contact with friends/acquaintances. Longitudinal analysis disclosed a marked decrease in the number and duration of overt phases and stays in hospital, progressive aggravation or residual symptoms in quiescent intervals, and similar decline in ability to work and earn a living. Covariance analysis revealed a significantly greater reduction in total hospitalization in night clinic patients.
Together with all other developed countries, Canada's population is experiencing a significant increase in the proportion that is elderly. This paper examines basic linkages between individual ageing, the prevalence of various chronic health conditions, functional limitation and the receipt of help in activities of daily living (ADL) and instrumental activities of daily living (IADL) for the Canadian population using recent data from the National Population Health Survey (NPHS) as well as the Health and Activity Limitation Surveys (HALS) and the two General Social Surveys (GSS) with health data. Presented are age- and sex-specific prevalence of chronic conditions and logistic regression is used to assess the impacts of different chronic conditions on the receipt of help for IADL and ADL. The importance of gender and living alone in influencing the receipt of help and also of use of formal agencies is presented using additional data from HALS. Findings from these analyses are also used to project changes in the distribution of health status defined by disability and receipt of help with IADL/ADL and, secondarily, by chronic condition. These analyses imply increases in demand for a range of health related services which will be 50 to 100% greater than the growth in the total elderly population.
This study has established true injury rates in New Zealand in 1986 and 1991 for the general and working populations. The general population grew by 3% between the two censuses, while the injury rate increased by 23%. The workforce decreased by 7% while the workforce injury rate rose by 11%. The numbers of salary earners and wage earners fell by 10% and the number of self-employed workers rose by 4%, the injury rates in the former rising by 16% and falling by 7% in the latter group. This suggests either a lower injury rate or a lower claim rate among these latter workers. Young males have the highest injury rates in the general and workforce population. Women have half the injury rate of men, suggesting that women should pay lower insurance premiums. Detailed analysis revealed 'high injury rate/high cost' groups in whom targeted intervention strategies should be cost-effective. This study gives a baseline against which changes can be measured. We recommend that this study be repeated.
A follow-up study by personal interview (45) or written response (4) or next-of-kin (3) interview using a questionnaire, has been made at least 1 year from discharge of the 52 survivors (82%) of 65 lower limb amputees treated at the Royal South Sydney Hospital in the years 1988-1989. At follow-up prostheses were used by 94% of the people, 72% of the group using their prostheses all day. Independence in self-care was found to be more important to final discharge home than walking skills. The 93% return home rate was considered to be in part due to funding for home modifications provided by government sources. Car driving was a mobility aid for 25% of patients whereas public transport was used by only 9% of subjects. Some patients mentioned that the loss of pain and a feeling of well-being was a positive gain from their amputation surgery.
This study monitored the level of discriminatory attitudes toward people living with HIV/AIDS (PLWHA) exhibited by the general public in Hong Kong from 1994 to 2000.
A series of six cross-sectional telephone surveys using an identical method and a structured questionnaire were conducted. A total of 6,795 respondents aged 18 - 50 randomly selected from the general population participated in the study.
Over the study period, the level of discriminatory attitudes toward PLWHA exhibited by the public has been improved slightly. For instance, fewer respondents in 2000 (10.6%) than in 1994 (21.8%) agreed that an HIV infected person should move out of the household (chi(2) test for trend, p < 0.001). However, there remained about one third who would avoid a friend infected with HIV (chi(2) test for trend, p < 0.05). Logistic regression analysis demonstrated that misconceptions about HIV transmission routes remained strongly associated with the discriminatory attitudes toward PLWHA; other significant factors included exposure to TV Announcement of Public Interest on HIV/AIDS-related issues and perceived chance of HIV infection as a result of having homosexual behaviours.
Though some improvement has been observed, the level of discriminatory attitudes is still high. Sustained education to remove misconceptions about HIV infection is much required.
In this paper, the Dutch version of the Quebec User Evaluation of Satisfaction with assistive Technology (D-QUEST) is validated in users of a large variety of assistive devices (n=2002).
D-QUEST consists of a written questionnaire. The respondent rates his or her satisfaction with respect to 12 aspects on a five-point scale. Users of 10 different types of assistive devices participated. Analyses were performed for each type of assistive device. Reliability is tested by analysing internal consistency. Content validity is tested by analysing applicability of the 12 aspects. The non-applicability option for answering questions is studied. Construct validity is tested by analysing correlations with problem solving and with general satisfaction.
Reliability proves to be good for all types of assistive devices. Including the non-applicability option improves the feasibility of the instrument without affecting content validity. Correlations between D-QUEST scores on the one hand and problem solving and general satisfaction questions on the other are as expected, supporting validity.
D-QUEST (and therefore also QUEST) proves itself to be a highly applicable, reliable and valid instrument to assess user-satisfaction of users of all kinds of assistive device provisions.
To examine the internal validity of the static sitting balance, dynamic sitting balance, and coordination subscales of the Trunk Impairment Scale (TIS), a reliable and valid scale measuring trunk performance and sitting balance in people after stroke.
A total of 162 people after stroke were included in the study. Participants were recruited from an acute unit and in- and out- patient rehabilitation setting. To examine internal validity of the subscales of the TIS, we conducted a Rasch analysis by means of the Partial Credit Model. For each subscale, we examined whether the distribution of scores fitted the theoretical Rasch model.
The first item of the static sitting balance subscale had to be removed since it had a large ceiling effect. The remaining static sitting balance subscale did not fit the Rasch model (Chi-square = 7.03, p < 0.0001 with Bonferroni adjusted p-level = 0.01). Both the dynamic sitting balance (Chi-square = 42.65, p = 0.0052 with Bonferroni adjusted p-level = 0.005) and coordination subscales (Chi-square = 7.87, p = 0.4461 with Bonferroni adjusted p-level = 0.01) fitted the Rasch model.
Internal validity of the dynamic sitting balance and coordination subscales was confirmed. Based on our results, we present the TIS, version 2.0 (TIS 2.0).
To investigate the measurement properties of the Quebec User Evaluation of Satisfaction with assistive Technology (QUEST 2.0) with respect to test-retest stability, alternate form reliability, construct validity and applicability.
Data on satisfaction and quality of life impacts of mobility devices were obtained from 81 community-based adults with Multiple Sclerosis, using the QUEST 2.0 and the Psychosocial Impact of Assistive Devices Scale (PIADS). Subjects were assigned to four groups and a second QUEST 2.0 was administered one week later. Groups differed with respect to the format and the order in which alternate forms were presented. Measures of association were calculated between QUEST 2.0 and PIADS (n = 81) and between QUEST 2.0 alternate forms (n = 48). Respondents' reactions were considered.
The device subscale, services subscale, and total QUEST 2.0 scores achieved good test-retest stability (ICC 0.82, 0.82, 0.91). Alternate-form equivalence (ICC 0.89, 0.76, 0.91) was lower for services. The positive correlations between QUEST 2.0 and the three PIADS dimensions were fair to moderate for device and total QUEST 2.0 (r(p) 0.34 to 0.45) and fair with services (r(p) 0.27 to 0.30). The tool was positively received, with some restrictions for the services subscale.
These findings on the psychometric properties of the QUEST 2.0 reinforce the relevance of the device subscale as an important outcome measure for assistive technology MS users. Further assessment of the services subscale is needed.
The World Health Organization Disability Assessment Schedule (WHODAS 2.0) was considered as a potentially appropriate patient-reported outcome measure (PROM) for community rehabilitation services in the UK. The study explored qualitative aspects of the measure's content and content and construct validity.
A convenience sample of 10 community rehabilitation service users participated in semi-structured interviews and completed the WHODAS 2.0. Content analysis and a constant comparative method of analysis were applied. Participants' accounts were compared with the measure's content and its underlying construct of disability.
Participants' reports of current difficulties were rich with accounts of bodily impairments and activity and participation limitations. WHODAS 2.0 content largely covered those activities that interviewees found difficult. Participants tended to conceptualize disability according to the medical model. The wording of the questionnaire allowed for ambiguity with respect to social perspectives on disability, which resulted in variability of scores.
While WHODAS 2.0 content coverage appears comprehensive, the questionnaire in its current form tends to favor a medical construct of disability. We recommend caution when applying WHODAS 2.0 in contexts such as community rehabilitation, where social aspects of disability may be considered important. Further investigation of the measure's construct validity might be warranted.
Given the growing number of people with disabilities in Estonia, an initial rehabilitation needs assessment instrument that included the World Health Organization Disability Assessment Schedule (WHODAS 2.0) was developed and tested to determine its feasibility in assessing social rehabilitation needs.
WHODAS 2.0 items were complemented with questions about the nature of disability-related problems with regard to personal, social and environmental aspects of functioning. Four rehabilitation specialists assessed 101 persons' needs in face-to-face interviews. Data were analyzed using descriptive statistics and thematic analysis.
The comprehensive initial assessment instrument tested was sufficiently informative to assess functioning and identify social rehabilitation and other social needs. Participants had difficulty in understanding some WHODAS 2.0 items, and coding and scoring respondents' answers using WHODAS 2.0 frames of reference proved challenging for interviewers.
The WHODAS 2.0 is mainly related to health conditions. Complementing it with questions about the nature and severity of the difficulties social rehabilitation service applicants experienced added essential information for planning interventions. Implications for Rehabilitation A well conceived, holistic initial assessment that addresses biological, psychological, sociocultural and environmental factors can provide substantial information for targeting services to meet a person's rehabilitation needs. The WHODAS 2.0 is a useful framework for conducting initial assessments, but since it focuses on health needs, supplementing it with additional items about personal, social and environmental factors may be necessary to address services needs from social, vocational and other rehabilitation perspectives. Rehabilitation specialists must be well prepared to use the WHODAS 2.0 and conduct the overall assessment, including providing clear instructions and support to applicants applying for services.
The aim of this study was to assess impairments, disabilities and health related Quality of Life (QOL) after treatment of breast cancer and to analyse the relationship between treatment modalities, impairments, disabilities and health related QOL.
Fifty-five patients who underwent a modified radical mastectomy or a segmental mastectomy with axillary lymph node dissection were retrospectively assessed with a mean follow up of 2.7 years after treatment. Impairments were assessed by means of measuring active shoulder range of motion, grip strength, arm volume and pain. Disabilities were assessed by means of the Shoulder Disability Questionnaire (SDQ) and health related QOL was assessed by means of the RAND 36-item Health Survey (RAND-36).
University Hospital Groningen (The Netherlands).
Pain (60%) and reduction of grip-strength (40%) were the most frequent impairments found. The prevalence of impaired range of motion and oedema was 9 - 16% respectively 15%. Mean group score of the SDQ was 33.7 (sd: 32.1) and mean scores of the RAND-36 differed significantly for physical functioning, vitality and health perception to that of a female norm group. Radiotherapy and chemotherapy were significant factors in the prediction of impaired range of motion. Pain and restricted range of motion explained 61% respectively 12% of the variance in disability (SDQ). In the prediction of health related QOL, pain, grip strength and arm volume were significant factors respectively in six, three and two domains.
Pain is the most frequent assessed impairment after breast cancer treatment with strong relationship to perceived disability and health related QOL. Disability is mild and health related QOL (RAND-36) differed in three of the nine domains with a female norm group.
Determine validity and reliability of SenseWear Pro2 Armband (SWP2A) and Yamax Digi-Walker SW-200 Pedometer (YDWP) in stroke and healthy adults.
Fifteen stroke patients and 15 healthy participants wore SWP2A on upper arm and YDWP at hip/knee. Different activities were performed: treadmill walking, walking up/down a step, cycling and walking on an even surface. Steps and Energy Expenditure (EE) were measured and compared to steps counted manually and indirect calorimetry. Repeated measurements were compared to determine reliability of both devices.
Spearman correlation coefficients between knee-worn YDWP and counted steps while walking on an even surface was ≥0.89 in healthy and ≥0.95 in stroke. Treadmill walking revealed high Spearman correlation coefficients in healthy individuals (rs ≥ 0.90) and at 1.5 km/h in stroke (rs = 0.69). During other activities YDWP often underestimated steps. SWP2A data revealed inconsistent results in EE and steps. Reliability tested by repeated measurements varied between 0.66 and 0.98 for YDWP and 0.61 and 0.97 for SWP2A.
YDWP and SWP2A are both reliable. Only knee-worn YDWP is a valid device to measure steps except high intensity walking in stroke. YDWP systematically undercounts steps during other activities of short duration. This study could not demonstrate valid measurement of steps/EE in stroke using SWP2A. Implications for Rehabilitation Stroke is a disabling disease with residual neurologic deficits, which impairs mobility and predisposes them to sedentary behavior. A Yamax Digi-Walker SW-200 knee-worn pedometer showed to be a valid and reliable technique to measure ambulatory activity in stroke. A valid instrument to measure energy expenditure in stroke needs to be explored.
This paper presents the results of a scoping review of the research literature on community-based employment for individuals with intellectual disabilities from 2000 to 2010. The review examined the variables studied in each paper, and considered the degree to which elements of social inclusion were addressed.
The search strategy identified a total of 245 articles, the total pool of which was reduced to 42 following abstract and text review. Two researchers reviewed the final set of articles and extracted information relevant to the study goals. Independent and dependent measures used in the studies were categorized relative to a conceptual model of social inclusion. The frequency with which each aspect of inclusion was addressed in the studies was totalled, and the resulting pattern analyzed qualitatively.
The analysis revealed that the majority of papers identified the work role achieved (i.e. employment and pay rates, job titles) as the primary construct of interest, while fewer than 5 articles focused on central aspects of inclusion, such as sense of belonging, reciprocity, and need fulfillment.
This study profiles the evidence base relative to inclusive employment for people with intellectual disabilities. The lack of evidence on the degree to which social inclusion is being achieved through community-based employment highlights a critical area requiring attention.
We developed a questionnaire designed to determine the state of services provided by the National Health Service within the UK for adults with acquired neurologically caused communication disorders. A further aim was to compare our results with those from a similar survey conducted 10 years ago by Mackenzie et al.
We sent questionnaires to 264 managers and directors of adult speech and language therapy services in the UK. We asked questions about staffing levels, regional variations, patterns of service delivery at acute and chronic stages and staff time spent working with different communication and swallowing problems.
Nearly 53% of average staff time was spent working with swallowing disorders accompanying neurological damage (dysphagia) compared to 24% with aphasia. As the percentage of time spent working with swallowing increased, the percentage of time spent working with aphasia reduced. Out of the time spent on aphasia treatment, 48% averages less than 3 h per week duration and just 4.8% averages more than 3 h per week, which was correlated with total number of speech and language therapists employed by a service. We found a significant difference only between London, with the highest total staff numbers, and the South West, with the lowest. We also found significant relationships between staff numbers and population size and staff numbers and the level of referrals to the service.
Our main conclusions are: (1) while there may have been an increase in the number of speech and language therapists working with acquired and progressive neurogenic conditions in the past 10 years, they are mainly working with swallowing disorders, and (2) findings agree with recent studies showing that the amount of treatment or therapy that aphasic clients receive is well below that recommended by the literature.
To examine how disability was measured and understood within Irish data sources 2000-2006, using the International Classification of Functioning, Disability and Health (ICF) as a guiding framework for a more comprehensive and transformative definition of disability.
During the EU-funded Measuring Health and Disability in Europe (MHADIE) project (2003-2006), an audit of data sources which included a disability identifier question was conducted. Thirty Irish data sources were examined in total. An overview of these data sources was provided in 'Disability Data Sources in Ireland' (National Disability Authority, unpublished, 2007). Using guidelines developed by Cieza et al. (J Rehabil Med 2002;34:205-210, J Rehabil Med 2002;27:212-218) five data sources were selected for detailed examination and were mapped to the ICF. These were the census (2006), National Disability Survey (2006), National Physical and Sensory Disability Database (2006), Survey of Lifestyles, Attitudes and Nutrition (2002), Euro Student Survey (2003). Subsequent work conducted after the completion of the MHADIE project added to the findings.
The environmental dimension of disability dominated the data collection exercises which used the ICF as their framework-for the National Disability Survey (NDS) and the National Physical and Sensory Disability Database (NPSDD). Both also had strong focus on activity and participation. When mapped on to the ICF, the data sources which preceded the ICF or did not use it, are shown to focus more on activity and participation data than any other ICF component. Across the five selected data sources, limited information was collected on body function and body structure.
This study systemically reviewed the published literature on the ICF core set.
A computer search of the MEDLINE, PubMed and SCOPUS databases was conducted between 2001 and December 2012. Articles reporting on the development of a set or sets of ICF categories for specific disease or health conditions were selected for a systematic review.
The analysis included 116 articles from 36 journals, with the majority of papers having been published in 2011 and 2012. In these studies, spinal cord injury was the most frequently reported disease. The majority of the experts involved in the consensus process were physicians and physical therapists.
This systematic review of studies on ICF core sets provided background information on the current developmental status of ICF core sets. Our findings also highlight possible directions for future research.
In 1976, the World Health Organization (WHO) estimated worldwide disability prevalence at 10%; recent evidence suggests the prevalence is even higher. Given the extent of disability around the world, it is essential for researchers and policy makers to have a uniform language for describing and discussing disability. The International Classification of Functioning, Disability and Health (ICF) is WHO's attempt to provide that standard language. Linking rules were published in 2002 and 2005 suggesting a method for standardising the process of connecting outcome measures to the ICF classification. The objective of this study is to study the extent to which the linking rules have been used by researchers to link health and health-related information to the ICF and collect the feedback about the current practices, applications and areas to improve the linking method.
Using a systematic review of health-based literature between 2001 and February 2008, we (1) determined research areas where the linking method is applied, (2) examined the characteristics of studies that linked information to the ICF and (3) described current practices and issues related to the process of linking health and health-related information to the ICF both quantitatively and qualitatively.
The systematic review yielded 109 articles from 58 journals that linked health information to the ICF and 58 of the articles employed published linking rules. The majority of articles were descriptive in nature, used linking for connecting content of health instruments to the ICF and linked English health content. Quality controls such as reliability checks, multiple raters and iterative linking processes were found frequently among users of the linking rules. Qualitative analysis created themes about: preparing units of information, who links to the ICF, reliability, matching or translating concepts from text to ICF categories, information unable or difficult to capture, quantitative reporting standards and overall linking process.
This review also shows that the linking process is a useful way to apply the ICF classification in research. With over 100 articles published in 58 peer-reviewed journals across 50 focus areas, linking health and health-related information to the ICF has been shown to be a useful tool for describing, comparing and contrasting information from outcome measures used to collect quantitative data, qualitative research results and clinical patient reports across diagnoses, settings, languages and countries.
To present a systematic literature review on the state of the art of the utilisation of the International Classification of Functioning, Disability and Health (ICF) since its release in 2001.
The search was conducted through EMBASE, MEDLINE and PsychInfo covering the period between 2001 and December 2009. Papers were included if ICF was mentioned in title or abstract. Papers focussing on the ICF-CY and clinical research on children and youth only were excluded. Papers were assigned to six different groups covering the wide scenario of ICF application.
A total of 672 papers, coming from 34 countries and 211 different journals, were included in the analysis. The majority of publications (30.8%) were conceptual papers or papers reporting clinical and rehabilitation studies (25.9%). One-third of the papers were published in 2008 and 2009.
The ICF contributed to the development of research on functioning and on disability in clinical, rehabilitation as well as in several other contexts, such as disability eligibility and employment. Diffusion of ICF research and use in a great variety of fields and scientific journals is a proof that a cultural change and a new conceptualisation of functioning and disability is happening.
The medical care needs and problems of persons with intellectual disabilities (ID) living in the general community have received limited attention in previous studies. The aim of this article is to describe aspects of medical care utilization among people with ID living in the general community, with particular emphasis on examining the type and determinants of inpatient care utilization in Taiwan.
A cross-sectional survey of people with intellectual disabilities was employed. A total of 997 respondents who provided fully completed data concerning inpatient care utilization were recruited into the analysis.
A total of 12.4% of individuals with intellectual disabilities had used inpatient care in the 7 months prior to the survey. The average number of inpatient care visits in that time was 1.43, with an average hospital stay of 16.91 days. Surgery, fever, gastrointestinal disorders, psychiatric disorders, and accident were the main causes of inpatient care utilization. A stepwise logistic model showed that the factors of holding a Major Illness Card, regular medicine-taking and self-perceived health status were statistically significant to inpatient care utilization of people with intellectual disabilities.
Medical care providers and policy makers need to be aware that many people with intellectual disabilities have increased medical care needs that may require modification of standard medical care practices and service models in society.
This special issue of Disability and Rehabilitation is dedicated to the publication of nine articles by young P&RM researchers from different countries. These works reached the final stage in a competition – the Young Scientist Award — held during the 2nd World Congress of the International Society of Physical and Rehabilitation Medicine (ISPRM; Prague, Czech Republic, May 2003). The aim of this editorial paper is to analyse current trends in P&RM research as reflected in the above congress.
The purpose of this article is to describe how a skilled nursing facility with significant wheelchair traffic developed a protocol for the multidisciplinary assessment and intervention management of patients whose wheelchair use represents a risk to self and others. This article describes the procedure and two case studies illustrating the utility of the protocol.
Staff of the facility developed a protocol for responding to sentinel events related to patients hurting themselves and others while using a wheelchair or observed using the wheelchair in an unsafe manner. The goal of the protocol is to determine the cause of the event, identify the necessary multidisciplinary interventions, and the evaluation of the effectiveness of the interventions.
Case study analysis of the interventions indicated that a multidisciplinary evaluation and treatment plan leads to treatment interventions that suit the patient's medical condition while affording the patient the greatest amount of independence.
Many patients who live in a long-term skilled nursing facility must use either a manual or a power wheelchair for mobility. For these patients, the wheelchair may represent one of the last forms of independence they enjoy. The implementation of the protocol helped staff respond to important changes to the patient's condition and prepare a coordinated intervention. The patients found the protocol to be a helpful component of their treatment.
In a recent article, Hewat et al. 1.
Hewat S, Onslow M, Packman A, O'Brian S. A phase II clinical trial of self-imposed time-out treatment for stuttering in adults and adolescents. Disabil Rehabil 2006; 28: 33–42View all references claimed to have developed novel procedures for treating stuttering. The present article reviews relevant literature, and shows that the Hewat et al. claims of originality are exaggerated. It is concluded that the Hewat et al. study includes conceptual and methodological weaknesses that render their findings predominantly uninterpretable.