To describe an adult population with congenital limb deficiency (CLD) recruited through the National Resource Centre for Rare Disorders (TRS) in Norway: (1) demographic factors, (2) clinical features, (3) pain and (4) use of health care and welfare services.
Cross-sectional study. In 2012, a postal questionnaire was sent to 186 eligible persons with CLD, age 20 years and older.
Ninety-seven respondents, median-age 39 years (range: 20-82); 71% were women. The population was divided into two subgroups: (1) unilateral upper-limb deficiency (UULD) n = 77, (2) multiple and/or lower-limb deficiency (MLD/LLD). About 40% worked full-time, 18% received disability pensions and 64% reported chronic pain, mostly bilateral pain. Grip-improving devices were used more often than prostheses; 23% were previous prosthesis users. Use of health care and welfare services are described. No significant differences were found between the subgroups regarding pain or employment status.
Persons with CLD reported increased prevalence of chronic pain, mostly bilateral, and increased prevalence of early retirement. A greater focus on the benefits of the use of assistive devices, the consequences of overuse and vocational guidance may moderate pain and prevent early retirement. Further studies of more representative samples should be conducted to confirm our findings.
Most adults with congenital limb deficiency (CLD) live ordinary lives and experience normal life events. However, several report chronic pain and retire before normal retirement age. In spite of free and accessible prosthetic services, a large fraction chooses not to use prosthesis, more use grip-improving devices for specific activities. These preferences should be acknowledged by rehabilitation specialists. Focus on individually adapted environments, more information about the consequences of overuse, and vocational guidance may moderate pain and prevent early retirement.
To quantify relationships among 3 sets of factors: demographic factors, health and disability factors, and quality of life (QOL).
Part of a program of longitudinal research on aging and spinal cord injury (SCI) involving 3 populations: American, British, and Canadian. The present analysis uses data from the 1999 interval.
The Canadian sample was derived from the member database of the Ontario and Manitoba divisions of the Canadian Paraplegic Association. The British sample was recruited from a national and a regional SCI center in England. The American sample was recruited through a hospital in Colorado.
A sample of 352 participants was assembled from 4 large, well-established databases. The sample included individuals who had incurred an SCI at least 20 years earlier, were admitted to rehabilitation within 1 year of injury, and were between the ages of 15 and 55 at the time of injury.
A combination of self-completed questionnaires and interviews. Data included demographics, injury-related variables, health and disability-related factors, QOL, and perceptions about aging.
Using linear structural relationships modeling, we found that QOL was affected both directly and indirectly by age, health and disability problems, and perceptions of aging. Two surprising findings were as follows: those who experienced fewer disability-related problems were more likely to report a qualitative disadvantage in aging, and the younger members of the sample were more likely to report fatigue.
Fatigue is a concern because of the relationship of fatigue with perceived temporal disadvantage in aging, health problems, and disability problems. This finding highlights the need for clinical vigilance among those just beginning to experience the effects of aging.
To investigate associations between disability and employment 1 year after traumatic brain injury (TBI) using the International Classification of Functioning, Disability and Health (ICF) as a conceptual model.
A prospective study including 93 patients with moderate-to-severe TBI (aged 16-55 year). Disability components of the ICF model (impairments, activity limitations and participation restrictions) and personal factors (age, gender, pre-injury employment status) were used as independent variables. The outcome measure was employment at 1 year post-injury categorized into unemployed and employed groups.
Personal factors, impairments (brain injury severity, overall trauma severity and number of impaired body functions) and activity limitations (motor and cognitive abilities) accounted for 57% of the variance in employment outcome. Multivariate analyses showed that the probabilities of being employed 1 year post-injury were 95% lower for patients who were unemployed pre-injury (OR?=?0.05), 74% lower for those with more severe brain injury (OR?=?0.26) and 82% lower for those with more cognitive limitations (OR?=?0.18).
Rehabilitation professionals should take into account the importance of the ICF model when planning vocational rehabilitation interventions for individuals with TBI and focus on targeting modifiable aspects related to employment outcome, such as the individual's cognitive ability.
To investigate the prevalence of children with physical disabilities who used a computer-based ATD, and to examine characteristics differences in children and youths who do or do not use computer-based ATDs, as well as, investigate differences that might influence the satisfaction of those two groups of children and youths when computers are being used for in-school and outside school activities.
A cross-sectional survey about computer-based activities in and outside school (n = 287) and group comparisons.
The prevalence of using computer-based ATDs was about 44 % (n = 127) of the children in this sample. These children were less satisfied with their computer use in education and outside school activities than the children who did not use an ATD.
Improved coordination of the usage of computer-based ATDs in school and in the home, including service and support, could increase the opportunities for children with physical disabilities who use computer-based ATDs to perform the computer activities they want, need and are expected to do in school and outside school.
The total cost of the Swedish handicap system is estimated at US $10.7 billion for 1989. The cost is distributed across different authorities with separate legal and financial responsibility. The concept of technology must be extended to include consideration of both the resources spent and benefits gained in the public sector and the magnitude and distribution of transfer payments from social insurance to fulfill its function in handicap policy decision making.
Having a disability is a barrier to securing and maintaining employment. Most research has focussed on employment barriers among adults, while very little is known about young people's experience finding paid work.
Young people aged 15-24 were selected from the 2006 Participation and Activity Limitation Survey to explore the barriers and discrimination they experienced in seeking employment (n?=?1898).
Our findings show that teens and young adults with disabilities encountered several barriers and discrimination in seeking paid employment. The types of barriers that these young people encountered varied by age and type of disability. There were fewer yet different types of barriers to working that were encountered between the two age groups (teens and young adults). Several socio-demographic factors also influenced barriers to working. Severity of disability, type and duration of disability, level of education, gender, low income, geographic location and the number of people living in the household all influenced the kind of barriers and work discrimination for these young people.
Rehabilitation and life skills counsellors need to pay particular attention to age, type of disability and socio-demographic factors of teens and young adults who may need extra help in gaining employment.
The goal of the present work was to measure the efficacy of a multicomponent programme designed to provide tailored support for the caregivers of disabled persons.
A total of 135 caregivers-care receiver dyads were randomly divided into an intervention group (n = 66) and a control group (n = 69). One-third of the care receivers were demented, and two-thirds had other diseases.
Health centres (publicly funded primary health care systems) in 8 rural and urban communities in southeast Finland.
The multicomponent support programme for the caregivers consisted of a 2-week rehabilitation period. The control group received standard care.
Continuation of the caregiver and care receiver relationship, care receiver mortality at the 2-year follow-up as well as the health-related quality of life (15D scale) and Zung's depression scale of the caregiver at the 1-year follow-up were evaluated.
At the 2-year follow-up, the caregiver-care receiver relationship was terminated for any reason in 11 cases (17%) in the intervention group, and in 25 cases (36%) in the control group. After adjusting, the primary outcome (i.e., termination of care giving for any reason) indicated statistical significance (p = 0.04) with a hazard rate of 1.83 (95% confidence interval 1.03-3.29). With a similar adjustment, the difference in mortality and placement to institutional care between the two groups demonstrated a trend towards statistical significance. The caregivers' health, as related to quality of life and depressive symptoms, remained unchanged in both groups at the 1-year follow-up.
These results indicate that a tailored support programme for caregivers may help the caregiver to continue the caregiver-care receiver relationship and delay institutionalization.
This article describes basic characteristics and primary outcomes of unselected patients with stroke. These patients were part of the Copenhagen Stroke Study, a prospective, consecutive, and community-based study of 1197 acute stroke patients. The setting and care was multidisciplinary and all treatment was performed within the dedicated stroke unit. Neurologic impairment was measured at admission, weekly throughout the hospital stay, and again at the 6-month follow up. Basic activities of daily living, as measured by the Barthel Index, were assessed within the first week of admission, weekly throughout the hospital stay, and again after 6 months. Upon completion of the in-hospital rehabilitation, which averaged 37 days, two-thirds of surviving patients were discharged to their homes, with another 15% being discharged to a nursing home. Only 4% of the patients with very severe strokes reached independent function, as compared with 13% of patients with severe stroke, 37% of patients with moderate stroke, and 68% of patients with mild stroke.
To provide a comprehensive description of functioning and disability with regard to stages of disease progression in adults with myotonic dystrophy type 1 (DM1). Further to explore associations of measures of manual dexterity and of walking capacity with measures of activities of daily living (ADL) and participation in social and lifestyle activities.
Seventy persons with DM1 underwent examinations, tests and answered questionnaires. Stages of disease progression were based on the muscular impairment rating scale.
Overweight, cardiac dysfunctions, respiratory restrictions, fatigue and/or low physical activity levels were found in approximately 40% of those with DM1. Over 75% had muscle impairments, and activity limitations in manual dexterity and walking. Dependence in personal and instrumental ADL was found in 16% and 39%, respectively, and participation restrictions in social and lifestyle activities in 52%. The presence of concurrent body-function impairments, activity limitations and participation restrictions was high. Significant differences were found in muscle impairment, manual dexterity, mobility, ADL and social and lifestyle activities with regard to disease progression. Cut-off values in measures of manual dexterity and walking capacity associated to functioning are proposed.
This information can be used for developing clinical practise and for health promotion for persons with DM1.
The aim of this study was to determine whether the large investments in vocational rehabilitation made in Sweden during the 1990s had improved the level of return to work for young employees and to study the factors predicting return to work. The study population comprised all employees under 30 years of age whose reports on work-related disorders were under consideration at regional social insurance offices in Västerbotten county in 1990 and 1994 (n = 266). Between these years, increased efforts were made by the Swedish government to improve vocational rehabilitation. Data was collected from the register and by means of questionnaires. It was found that employees with musculoskeletal disorders were more likely to return to work during periods of intensive vocational rehabilitation. No increase in the level of return to work was apparent if all disorders were considered. Men showed a higher level of return to work than women, although women were better educated.