Most people with multiple sclerosis (PwMS) experience progressively worsening disability over a period of decades, thus further knowledge about the long-term changes in different areas of disability is essential.
The aims of this study were to evaluate changes in disability over ten years in PwMS, and to explore the value of personal and disease-specific factors and depressive symptoms in predicting disability. A further aim was to explore the value of these factors as predictors of mortality.
This study was based on a 10-year follow-up of a population-based study in Stockholm (n=166). Home visits were used to collect data on personal and disease-specific factors, walking ability, manual dexterity, cognitive function, mood, activities of daily living (ADL) and social/lifestyle activities.
The proportion of the study population who had disability in cognition, mood and social/lifestyle activities remained stable, while the proportion with disability in walking, manual dexterity and ADL increased. Disease severity predicted an increase in all studied variables of disability except in depressive symptoms. Older age and depressive symptoms were associated with mortality.
This study illustrates the importance of tailored interventions for PwMS and highlights the need for health-care professionals to consider the psychological aspects of the disease. Furthermore, our results indicate that the Expanded Disability Status Scale was a useful tool for predicting future disability.
A 10-year follow-up of a population-based study of people with multiple sclerosis in Stockholm, Sweden: changes in health-related quality of life and the value of different factors in predicting health-related quality of life.
Health-related quality of life (HRQL) in people with multiple sclerosis (PwMS) is negatively affected compared to that of the general population. Cognitive impairment and depressive symptoms have been shown to predict worse HRQL in a short-term perspective. Considering the progressive nature of MS, it is essential to include the long-term (10 years) perspective of HRQL in PwMS.
The aim of this 10-year follow-up of a population-based sample of PwMS was to explore changes in and the predictive value of personal factors, degree of MS disability, depressive symptoms and cognitive impairment on HRQL.
Data on personal and disease-specific factors, mood, and cognitive function was collected. Data on HRQL was collected, seen as a health profile with the Sickness Impact Profile, as a health index with the EuroQol 5D and as a single global question with the EQ Visual Analog Scale.
HRQL worsened over 10 years according to the health profile (Sickness Impact Profile Total and its physical dimension) and according to the health index. The effect sizes were small. HRQL assessed with the single global question remained unchanged. Depressive symptoms and cognitive impairment predicted worse HRQL.
In a 10-year perspective the HRQL with regard to its physical domain or when seen as a total health profile tends to get worse in PwMS. Yet, HRQL with regard to its psychosocial domain and with regard to PwMS' self-rated health, remains stable. There is a potential for health-care professionals to decrease the impact of modifiable factors on HRQL in PwMS by identifying those with depressive symptoms and/or cognitive impairment and initiating evidence-based treatment as well as meeting the need for environmental facilitators aiming at reducing disability.
The national strategy for treatment of chronic diseases - including MS - and changes in the Swedish welfare system, call for analyses of the use of, and patient satisfaction with, care in a long-term perspective. The aim was therefore to explore the use of care and the predictive value of personal factors, disease-specific factors and functioning on the use of care and to explore patient satisfaction with care in a 10-year perspective.
Information regarding personal factors, disease-specific factors, functioning and satisfaction with care was collected by home-visits; use of care was collected from the Stockholm County Council computerised register.
Data from 121 people with MS (PwMS) was collected. Primary care accounted for the majority of all care. Neurology and Rehabilitation Departments together accounted for two-thirds of all hospital outpatient care. Rehabilitation Departments accounted for one-third of the total number of inpatient days. Lower coping capacity, impaired manual dexterity and activity of daily living dependency at baseline, together with progress in MS disability predicted a higher use of care. Overall, patient satisfaction with care was stable over time.
The extensive use of care offers challenges to care coordination. Implementation of person-centred care could be a strategy to increase efficacy/outcome of care.
There is a lack of standardized and quantifiable measures of touch function, for clinical work. Furthermore, it is not possible to make accurate diagnostic judgments of touch function before normative values are estimated. The objectives of this study were to establish adult norms of the perceptual threshold of touch (PTT) for the hands and feet according to age and gender and to determine the effect of right/left side, handedness, height, weight, and body mass index (BMI) on the PTT. The PTT was assessed by using a high-frequency transcutaneous electrical nerve stimulator (Hf/TENS) with self-adhesive skin electrodes in 346 adults. The PTT was identified as the level registered in mA at which the participants perceived a tingling sensation. The PTT for all participants was a median of 3.75 mA (range 2.50-7.25) in the hands and a median of 10.00 (range 5.00-30.00) in the feet. With increasing age an increase of the PTT was found. Men reported higher PTT than women. The right hand had higher PTT than the left. Handedness, height, weight, and BMI did not affect the PTT. Adult norms of the PTT in the hands for age, gender, and right/left side are presented for four age groups. The present study's estimate of the PTT in the hands could be used as adult norms. Adult norms for the feet could not be estimated because the PTT values in the feet showed a great variance.
The aim was to develop and test a postal questionnaire, the Swedish MYS questionnaire, for validity and reliability in order to survey health states relevant to young persons with stroke.
The questionnaire was designed with the International Classification of Functioning, Disability and Health as a frame and tested for content validity, face validity and readability by a group of experts including an occupational therapist, a physician, a physiotherapist, a psychologist, a speech and language therapist, a welfare officer and a selected sample of young persons with stroke (n = 15). To test the questionnaire for reliability in terms of stability a test-retest was performed on a selected sample of young persons (n = 20) with stroke.
The questionnaire was found to be valid in terms of content validity, face validity and readability and finally consisted of 59 questions encompassing health states relevant to young persons with stroke. The questionnaire was stable in the test-retest (?; 0.40-1.0) except for two questions and one alternative answer.
The Swedish MYS questionnaire is a valid and reliable questionnaire that can be used in postal surveys of young persons with stroke except for two questions and one answering alternative, which need to be tested further.
Although priorities in Swedish stroke care should be based on the ethical principles of equal care and greatest support to those in greatest need, being of working age (younger) or retired (older) might influence expectations on recovery and the provision of care and rehabilitation.
Information regarding the use of care and rehabilitation during the 1st year after stroke was retrieved from the Stockholm County Council database and the medical data was taken from the medical records. The Barthel Index was used for self-ratings of dependence pre-stroke, and the Stroke Impact Scale was used to assess self-perceived disability and a global rating of recovery at 12 months. One hundred and ninety-two individuals were included.
Results showed that the younger group received more care and rehabilitation than the older group. In the older group, comorbid conditions and pre-stroke dependence, estimated in accordance with the Barthel Index, were more common. The older group reported larger impact on self-perceived disability regarding strength, mobility, self-care and domestic life, while self-perceived global recovery did not differ between the groups.
Younger individuals received more care and rehabilitation, which indicates structural inequality in the provision of health care resources. However, as no difference in self-perceived global recovery was found between the groups; the disparity in the provision of health care may also be a consequence of greatest support being given to those in greatest need. By demonstrating the necessity of involving self-rated assessments of stroke impact at different points in time and in different age groups, the results of this study add to previous knowledge of age-related differences in the provision of health care and stroke outcome. Furthermore, this suggests a way to approach evaluation of equality in the provision of health care.
Erratum In: J Neurol Sci. 2013 May 15;328(1-2):106Susanne, Palmcrantz [corrected to Palmcrantz, Susanne]; Lotta, Widén Holmqvist [corrected to Holmqvist, Lotta Widén]; K, Sommerfeld Disa [corrected to Sommerfeld, Disa K]; Malin, Tistad [corrected to Tistad, Malin]; Charlotte, Ytterberg [corrected to Ytterberg, Charlotte]; Lena, von Koch [corrected to von Koch, Lena]
OBJECTIVE: To describe changes in disability and health-related quality of life in patients with Guillain-Barré syndrome in Sweden during the first two years after onset. SUBJECTS: Forty-four patients were recruited from eight different hospitals, and 42 of them (mean age 52 years) were followed for two years. Evaluations were performed, primarily as home visits, at two weeks, two months, six months, one year and two years after onset. MAIN MEASURES: Disability was measured using the Katz Personal and Extended Activities of Daily Living Indexes, the Barthel Index, the Frenchay Activity Index and assessments of work capacity; health-related quality of life using the Sickness impact Profile. RESULTS: At two weeks, one year and two years after onset of Guillain-Barré syndrome, 76%, 14% and 12% of patients were dependent in personal activities of daily life (ADL); and 98%, 28% and 26% were dependent in instrumental ADL. At two weeks, all of the patients that were working before onset were unable to work owing to Guillain-Barré syndrome; at two years, 17% were unable to work. At two weeks, scores on Sickness Impact Profile were elevated in all dimensions; at two years, they remained elevated in the physical dimension and in the categories home management, work and recreation and pastimes. CONCLUSIONS: The impact of Guillain-Barré syndrome on ADL, work, social activities and health-related quality is considerable two years after onset and presumably persists beyond this time point.
Research describing the personal experiences of Guillain-Barré syndrome (GBS) is limited, but is important for identifying the patients' need of support. The aim of this study was to describe experiences of falling ill with GBS, with the focus on the onset of disease, the diagnosis and the illness progress during hospital care.
The study included 35 persons, 20-78 years old. They were interviewed 2 years after the onset of GBS. The interviews were analysed using qualitative content analysis.
The onset was described as either an incomprehensible, prolonged, increasing deterioration with puzzling sensations or as a frightening, rapid onset with a sudden loss of body control. The majority of the persons relied heavily on the reassurance of a positive prognosis, and expressed immense confidence in being able to recover. During the early phase at the hospital, a rapid and steady course of improvement inspired hope in many persons. In contrast, even in this early phase of hospital care some individuals expressed doubts of a slow recovery. Feelings of fear and insecurity were evident when losing body functions, thus causing helplessness. Sensations of pain, numbness and lost body image increased their vulnerability. Half of the ventilator-treated persons expressed vivid memories of scary hallucinations.
The onset is characterized by an incomprehensible bodily deterioration or a frightening, rapid paralysis. In the initial phase, there is hope for recovery, which for many individuals is reinforced by a steady recovery. In contrast, early psychosocial support may be necessary for some persons with an alarmingly slow recovery.
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.
Longitudinal changes in sickness absence and disability pension, and associations between disability pension and disease-specific and contextual factors and functioning, in people with multiple sclerosis.
Even though it is well known that disability due to MS is highly associated with employment status, the long-term longitudinal perspective on sickness absence and disability pension over the MS trajectory is lacking. In addition, further knowledge of risk factors for future disability pension is needed.
To explore long-term longitudinal changes in the prevalence of sickness absence and disability pension in people with MS (PwMS), as well as to explore associations between disease-specific factors, contextual factors and functioning, and the outcome of future full-time disability pension.
A prospective, population-based survival cohort study, with a nine year follow-up, including 114 PwMS was conducted by combining face-to-face collected data and register-based data.
The prevalence of full-time disability pension increased from 20% to 50%, however 24% of the PwMS had no disability pension at all at end of follow-up. Sex, age, disease severity and impaired manual dexterity were associated with future full-time disability pension.
The large increase in prevalence of PwMS on full-time disability pension during the MS trajectory, calls for the development and implementation of evidence-based interventions, aiming at keeping PwMS in the work force. Modifiable factors, such as manual dexterity should be targeted in such interventions.