Sverker Johansson

High concurrent presence of disability in multiple sclerosis. Associations with perceived health.

Objectives(1) To explore functioning and concurrent presence of disabilities — concerning cognition, manual dexterity, walking, energy, mood, activities of daily living (ADL), and social/lifestyle activities — in persons with multiple sclerosis (PwMS) cared for at an outpatient MS clinic. 2) To describe the PwMS’ perceived physical and psychological impact and associations with the same disabilities.Material/methodsA descriptive cross-sectional study was carried out in 219 PwMS at the MS Centre, Karolinska University Hospital. Logistic regression employing proportional odds models was used to identify the associations of the disabilities with the perceived physical and psychological impact.ResultsIn this sample the distribution with regard to disease severity as per Expanded Disability Status Scale was; mild 59.5%, moderate 17% and severe 23.5%. Despite the high proportion with mild disease severity disability regarding cognition was found in 49%, manual dexterity 76%, walking 43%, energy 67%, mood 29%, ADL 44% and social/lifestyle activities in 48%. Two or more disabilities were found in 80%, 24 % had six or seven disabilities. Disability regarding energy, mood, walking, manual dexterity and ADL was significantly associated with increase in the perceived physical impact, whereas disability in energy and mood was significantly associated with increase in the perceived psychological impact.ConclusionsThe presence of several concurrent disabilities, some significantly associated with high perceived physical and psychological impact, in the majority of PwMS in outpatient clinics highlights the importance to identify disabilities, in particular fatigue and depressed mood, in order to supply health care interventions aiming to improve the life situation of PwMS.

A longitudinal study of variations in and predictors of fatigue in multiple sclerosis

Objectives: To describe variations in fatigue over the course of 2 years in a sample of persons with multiple sclerosis (MS), and to investigate the predictive value of the following variables on variations in fatigue: sex, age, sense of coherence, living with a partner, living with children, work status, immunomodulatory treatment, mood, disease severity, disease course, time since diagnosis and time. Methods: Every 6 months, 219 outpatients at an MS specialist clinic were assessed using the Fatigue Severity Scale (FSS). Predictive values were explored with Generalised Estimating Equation employing proportional odds models; FSS scores were categorised as non-fatigue, borderline fatigue or fatigue. Results: FSS scores varied significantly (p = 0.02); 54% changed FSS category one or several times, 27% were persistently fatigued and 19% persistently non-fatigued. Independent predictors of increased fatigue were depressive symptoms, weak/moderate sense of coherence, living with a partner and not working. Furthermore, moderate disease severity predicted increase when combined with >10 years since diagnosis or a progressive course. Independent predictors of decreased fatigue were no depressive symptoms, strong sense of coherence, living alone and working. Moreover, mild and severe disease predicted a decrease when combined with >10 years since diagnosis, and mild severity combined with a progressive course. Conclusion: Mood, sense of coherence and living with a partner were independent predictors of fatigue in persons with MS. In addition to monitoring disease related variables, health related services should apply a broad range of approaches and repeatedly assess fatigue in persons with MS, to provide preventive care and appropriate interventions.

Perceived needs and satisfaction with care in people with multiple sclerosis: A two-year prospective study

BackgroundConsidering the costs of multiple sclerosis (MS), it is crucial that the health-related services supplied are in accordance with needs as they are perceived by people with MS (PwMS). Satisfaction with care is related to quality of care and can provide health care providers with the means for improvement. The aim was to explore the perceived needs and satisfaction with care amongst PwMS over a two-year period, also taking sex and disease severity into consideration.MethodsThe sample consisted of 219 outpatients at a MS specialist clinic. Data on perceived needs and satisfaction with care were collected every six months using a questionnaire which included various dimensions of care. The data was analysed for the whole sample and on an individual level, as well as in subgroups with regard to sex and disease severity.ResultsThere were no statistically significant variations in the proportion of PwMS with perceived needs concerning different health-related services during the study period. However, individual variations were found with regard to both perceived needs and satisfaction with care. Few PwMS perceived a continuous need for a specific service. However, the majority perceived a need for rehabilitation, assistive devices, transportation service for the disabled, psychosocial support/counselling and information on social insurance/vocational rehabilitation at least sometimes. Severe MS was associated with a greater perceived need for almost all the services studied and women experienced a need for psychosocial support/counselling to a greater extent than men. In relation to the different categories of health care staff, PwMS were most satisfied with nurses with regard to all dimensions of care. They were least satisfied with the availability of psychosocial support/counselling; and information about social insurance/vocational rehabilitation.ConclusionDespite the large proportion of individuals with mild disease severity in our sample, a considerable number of needs were identified of which many, on an individual level, varied over time. Key services demanded by PwMS were identified. Also the level of satisfaction with care varied and areas with a potential for improvement were identified such as the availability of rehabilitation services including an increase in the supply of psychosocial support and counselling.

Variations in functioning and disability in multiple sclerosis. A two-year prospective study.

The aim of the present study was to explore variations in functioning and disability – with regard to cognition, manual dexterity, walking, energy, mood, activities of daily living and social/ lifestyle activities – every six months during a 2-year period, in 200 people with MS (PwMS) at an outpatient MS specialist clinic. Symbol Digit Modalities Test, Nine Hole Peg Test, Timed 25 Foot Walk, Fatigue Severity Scale, Beck Depression Inventory, Katz ADL Index Extended and Frenchay Activities Index were used to collect data. For analyses of statistically significant changes in scores during the study period, repeated measures ANOVA was used for ratio data and Friedman ANOVA for ordinal data. In addition, effect size as well as the mean/median change in score during the study period were determined for each functioning. Nearly all functioning studied varied significantly but there was no general deterioration in the sample. Small effect sizes were mainly found for the Frenchay Activities Index and a plausible practice effect was detected for the Symbol Digit Modalities Test. As many as 63 % with regard to walking and 46 % with regard to manual dexterity demonstrated > 20 % mean change in scores which has proved to be a reliable and clinically meaningful change. This study illustrates the importance of systematic and regular multidimensional assessment of functioning and disability in PwMS aiming to identify disabilities that could be minimized through timely and appropriate evidence-based interventions. The fluctuation in functioning and the conceivable learning effect inherent in instruments used should be taken into consideration when designing studies and interpreting the results.

Psychometric properties of the Fatigue Severity Scale: Rasch analyses of responses in a Norwegian and a Swedish MS cohort

Background: Rigorous testing of the original Fatigue Severity Scale (FSS—9) with modern psychometric methods is warranted. Objective: To determine the psychometric properties of the FSS—9 in multiple sclerosis (MS): internal scale validity; person response validity; unidimensionality; uniform differential item functioning; temporal stability of response patterns; and ability to separate people into distinct groups of fatigue. Methods: Rasch analyses were conducted on data from a Norwegian and a Swedish MS cohort followed for two years. Results: Item estimations in the FSS—9 did not differ between sex or levels of education but between the cohorts with regard to disability, disease course and time for evaluation, however, items 1 and 2 demonstrated unacceptable high outfit mean-square values in both cohorts. In an FSS—7 item version, items 3 and 4 in the Norwegian and 4 in the Swedish cohort demonstrated unacceptable goodness of fit but high separation indexes. In the FSS—7, the first unidimensional factor explained 87.5% (Norwegian cohort) and 86.4% (Swedish cohort) of the total variation. Conclusions: In MS, the FSS—7 demonstrates better psychometric properties than the FSS—9; items 1 and 2 neither empirically nor conceptually fit with the other seven items.

A 10-year follow-up of a population-based study of people with multiple sclerosis in Stockholm, Sweden: Changes in disability and the value of different factors in predicting disability and mortality

BACKGROUND 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. OBJECTIVES 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. METHODS 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. RESULTS 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. CONCLUSION 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.

How are cognitive impairment, fatigue and signs of depression related to participation in daily life among persons with multiple sclerosis?

Abstract Purpose: Factors that impact participation are of scientific and clinical importance. Participation in everyday activities among persons with multiple sclerosis (MS) can be compromised by various factors however the combined contribution of these factors to participation has not been explored. The aim of this study was to describe the relationship between cognitive impairment, physical disability and signs of depression and participation in daily life among persons with MS. Methods: Data from 200 participants were collected in an observational, prospective study. The majority was female, had mild physical disability, and an average age of 48.7. The impact of independent variables, including demographic and disease related data, levels of cognitive impairment, signs of depression and fatigue, on participation was investigated using path analysis. Results: Cognitive impairment was associated with restricted participation in domestic, leisure and outdoor domains. Restrictions in leisure and outdoor activities, but not domestic activities were related to signs of depression. Cognitive impairment was associated with the level of education and the level of physical disability. Conclusions: Increasing participation is an important outcome of rehabilitation. The results of this study suggest a multifactorial approach to intervention that considers physical, mental and emotional component to maximize participation among persons with MS. Implications for Rehabilitation Rehabilitation for persons living with multiple sclerosis (MS) should incorporate careful evaluation of physical disability, cognitive impairment and depression and their impact on participation. Clinicians need to evaluate participation in a variety of daily activities, including activities within and outside of the home, and leisure activities. Signs of depression may have a greater impact on participation in outdoor and leisure activities then on other activities.

Combination therapy with interferon-beta and glatiramer acetate in multiple sclerosis

Objectives –  To compare the effects of mono‐therapy with interferon‐beta (IFN‐β) or glatiramer acetate (GA) with IFN‐β + GA combination therapy for persons with multiple sclerosis (MS).

Can the Fatigue Severity Scale 7-item version be used across different patient populations as a generic fatigue measure - a comparative study using a Rasch model approach

BackgroundFatigue is a disabling symptom associated with reduced quality of life in various populations living with chronic illnesses. The transfer of knowledge about fatigue from one group to another is crucial in both research and healthcare. Outcomes should be validly and reliably comparable between groups and should not be unduly influenced by diagnostic variations. The present study evaluates whether the Fatigue Severity Scale 7-item version (FSS-7) demonstrates similar item hierarchy across people with multiple sclerosis, stroke or HIV/AIDS to ensure valid comparisons between groups, and provide further evidence of internal scale validity.MethodsA secondary comparative analysis was performed using data from three different studies of three different chronic illnesses: multiple sclerosis, stroke and HIV/AIDS. Each of these studies had previously concluded that the FSS-7 has better psychometric properties than the original FSS for measuring fatigue interference. Data from 224 people with multiple sclerosis, 104 people with stroke and 316 people with HIV/AIDS were examined. Item response theory and a Rasch model were chosen to analyze the similarity of the FSS-7 item hierarchy across the three diagnostic groupsResultsCross-sample differences were found for items #3, #5, #6 and #9 for two of the three samples, which raise questions about item validity across groups. However, disease-specific and disease-generic Rasch measures were similar across samples, indicating that individual fatigue interference measures in these three chronic illnesses might still be reliably comparable using the FSS-7.ConclusionsSome items performed differently between the three samples but did not bias person measures, thereby indicating that fatigue interference in these illnesses might still be reliably compared using FSS-7 scores. However, caution is warranted when comparing fatigue raw sum scores directly across diagnostic groups using the FSS-7. Further studies of the scale are needed in other types of chronic illnesses.

Use of health services in people with multiple sclerosis with and without fatigue

Objective To explore and compare the use of health services in people with multiple sclerosis (MS) with and without fatigue. Methods Over a period of 30 months, the use of health services in 48 MS outpatients with persistent fatigue and 36 without fatigue was studied. Data were collected from a computerized register and by interviews, and analyzed with regard to disease severity categorized as mild or moderate/severe MS. Results Fatigued people with mild MS used more hospital outpatient care and primary care including rehabilitation, and a higher proportion had transportation service, compared with non-fatigued people with mild MS. In moderate/severe MS, the differences were that non-fatigued people used more occupational therapy in primary care and a higher proportion had salaried service. Regardless of MS severity, informal care was more common among fatigued people. Conclusions Overall, fatigued people with mild MS have more contacts with outpatient health care compared with non-fatigued people. There are few such differences in people with moderate/severe MS. The reasons for the differences in use between fatigued and non-fatigued people are not understood and need further exploration. Fatigued people more often receive informal care, thus support to caregivers are of particular importance if fatigue is present.