Tori Smedal

Responsiveness and Clinically Meaningful Improvement, According to Disability Level, of Five Walking Measures After Rehabilitation in Multiple Sclerosis A European Multicenter Study

Background. Evaluation of treatment effects on walking requires appropriate and responsive outcome measures. Objectives. To determine responsiveness of 5 walking measures and provide reference values for clinically meaningful improvements, according to disability level, in persons with multiple sclerosis (pwMS). Methods. Walking tests were measured pre- and postrehabilitation in 290 pwMS from 17 European centers. Combined anchor- and distribution-based methods determined responsiveness of objective short and long walking capacity tests (Timed 25-Foot Walk [T25FW] and 2- and 6-Minute Walk Tests [2MWT and 6MWT] and of the patient-reported Multiple Sclerosis Walking Scale–12 [MSWS-12]). A global rating of change scale, from patients’ and therapists’ perspective, was used as external criteria to determine the area under the receiver operating characteristic curve (AUC), minimally important change (MIC), and smallest real change (SRC). Patients were stratified into disability subgroups (Expanded Disability Status Scale score ≤4 [n = 98], >4 [n = 186]). Results. MSWS-12, 2MWT, and 6MWT were more responsive (AUC 0.64-0.73) than T25FW (0.50-0.63), especially in moderate to severely disabled pwMS. Clinically meaningful changes (MICs) from patient and therapist perspective were −10.4 and −11.4 for MSWS-12 (P < .01), 9.6 m and 6.8 m for 2MWT (P < .05), and 21.6 m (P < .05) and 9.1 m (P = .3) for 6MWT. In subgroups, MIC was significant from patient perspective for 2MWT (10.8 m) and from therapist perspective for MSWS-12 (−10.7) in mildly disabled pwMS. In moderate to severely disabled pwMS, MIC was significant for MSWS-12 (−14.1 and −11.9). Conclusions. Long walking tests and patient-reported MSWS-12 were more appropriate than short walking tests in detecting clinically meaningful improvement after physical rehabilitation, particularly the MSWS-12 for moderate to severely disabled pwMS.

The Trunk Impairment Scale – modified to ordinal scales in the Norwegian version

Purpose: To translate the Trunk Impairment Scale (TIS), a measure of trunk control in patients after stroke, into Norwegian (TIS-NV), and to explore its construct validity, internal consistency, intertester and test–retest reliability. Method: TIS was translated according to international guidelines. The validity study was performed on data from 201 patients with acute stroke. Fifty patients with stroke and acquired brain injury were recruited to examine intertester and test–retest reliability. Construct validity was analyzed with exploratory and confirmatory factor analysis and item response theory, internal consistency with Cronbach’s alpha test, and intertester and test–retest reliability with kappa and intraclass correlation coefficient tests.Results: The back-translated version of TIS-NV was validated by the original developer. The subscale Static sitting balance was removed. By combining items from the subscales Dynamic sitting balance and Coordination, six ordinal superitems (testlets) were constructed. The TIS-NV was renamed the modified TIS-NV (TIS-modNV). After modifications the TIS-modNV fitted well to a locally dependent unidimensional item response theory model. It demonstrated good construct validity, excellent internal consistency, and high intertester and test–retest reliability for the total score.Conclusions: This study supports that the TIS-modNV is a valid and reliable scale for use in clinical practice and research. Implications for Rehabilitation Trunk control is an essential part of balance and postural control, thereby an important prerequisite for daily activities and function Impairments of trunk control is a common problem in stroke The TIS-modNV is a valid and reliable measure to evaluate impairments in trunk control The TIS-modNV containing ordinal superitems is recommended for use in clinical practice and research

Balance and walking after three different models of stroke rehabilitation: early supported discharge in a day unit or at home, and traditional treatment (control)

Objective To compare the effects on balance and walking of three models of stroke rehabilitation: early supported discharge with rehabilitation in a day unit or at home, and traditional uncoordinated treatment (control). Design Group comparison study within a randomised controlled trial. Setting Hospital stroke unit and primary healthcare. Participants Inclusion criteria: a score of 2–26 on National Institutes of Health Stroke Scale, assessed with Postural Assessment Scale for Stroke (PASS), and discharge directly home from the hospital stroke unit. Interventions Two intervention groups were given early supported discharge with treatment in either a day unit or the patients own home. The controls were offered traditional, uncoordinated treatment. Outcome measures Primary: PASS. Secondary: Trunk Impairment Scale—modified Norwegian version; timed Up-and-Go; 5 m timed walk; self-reports on problems with walking, balance, ADL, physical activity, pain and tiredness. The patients were tested before randomisation and 3 months after inclusion. Results From a total of 306 randomised patients, 167 were tested with PASS at baseline and discharged directly home. 105 were retested at 3 months: mean age 69 years, 63 men, 27 patients in day unit rehabilitation, 43 in home rehabilitation and 35 in a control group. There were no group differences, either at baseline for demographic and test data or for length of stroke unit stay. At 3 months, there was no group difference in change on PASS (p>0.05). Some secondary measures tended to show better outcome for the intervention groups, that is, trunk control, median (95% CI): day unit, 2 (0.28 to 2.31); home rehabilitation, 4 (1.80 to 3.78); control, 1 (0.56 to 2.53), p=0.044; and for self-report on walking, p=0.021 and ADL, p=0.016. Conclusions There was no difference in change between the groups for postural balance, but the secondary outcomes indicated that improvement of trunk control and walking was better in the intervention groups than in the control group. Trial registration This study is part of the Early Supported Discharge after Stroke in Bergen, ClinicalTrials.gov (NCT00771771).

“I refer to them as my colleagues”: the experience of mutual recognition of self, identity and empowerment in multiple sclerosis

Abstract Purpose: To explore how persons with multiple sclerosis (MS) experience participating in inpatient rehabilitation, and how it might provide psychosocial benefits. Method: Ten participants with MS who had completed inpatient rehabilitation in Norway and on Tenerife participated in two focus groups. A semi-structured interview protocol was used. Data were analyzed using qualitative content analysis informed by a phenomenological perspective. Results: During inpatient rehabilitation participants shared experiences with symptoms of the disease, of social stigma and coping strategies. They communicated experiences of living with MS and they created a sense of community, they became “colleagues”. This experience gave rise to mutual recognition of ability, impairment, self and identity, and thus facilitated personal empowerment to counteract social stigma through adequate coping strategies. Conclusion: Participating in inpatient rehabilitation gave people with MS the possibility to exchange information and communicate strategies for coping with the disease-related conditions and societal demands. They established social relations recognizing each other’s resources. Participants felt equipped to make decisions and to mobilize individual and collective resources. Recognition of the individual with both ability and impairment can be a key to empowerment. Implications for Rehabilitation In multiple sclerosis (MS), the clinical symptoms and the unpredictability of the disease may have consequences for how patients relate to self and to others, and hence how they perform socially. Stigmatization is commonly experienced among people with MS. The recognition experienced from peers create a sense of community. We recommend health care professionals to acknowledge the importance of peer support for self, identity and empowerment in MS.

The influence of coping styles on long-term employment in multiple sclerosis: A prospective study

Background: The aim was to investigate predictive values of coping styles, clinical and demographic factors on time to unemployment in patients diagnosed with multiple sclerosis (MS) during 1998–2002 in Norway. Method: All patients (N = 108) diagnosed with MS 1998–2002 in Hordaland and Rogaland counties, Western Norway, were invited to participate in the long-term follow-up study in 2002. Baseline recordings included disability scoring (Expanded Disability Status Scale (EDSS)), fatigue (Fatigue Severity Scale (FSS)), depression (Beck Depression Inventory (BDI)), and questionnaire assessing coping (the Dispositional Coping Styles Scale (COPE)). Logistic regression analysis was used to identify factors associated with unemployed at baseline, and Cox regression analysis to identify factors at baseline associated with time to unemployment during follow-up. Results: In all, 41 (44%) were employed at baseline. After 13 years follow-up in 2015, mean disease duration of 22 years, 16 (17%) were still employed. Median time from baseline to unemployment was 6 years (±5). Older age at diagnosis, female gender, and depression were associated with patients being unemployed at baseline. Female gender, long disease duration, and denial as avoidant coping strategy at baseline predicted shorter time to unemployment. Conclusion: Avoidant coping style, female gender, and longer disease duration were associated with shorter time to unemployment. These factors should be considered when advising patients on MS and future employment.

Physical therapy in multiple sclerosis differs across Europe: Information regarding an ongoing study:

The survey is supported by a grant from RIMS, an educational grant from Novartis Pharma AG, 260045/SVV/2014 and PRVOUK P34.

Need for differentiation of real and clinical important change in research on responsiveness of walking outcome measures in multiple sclerosis

Knowledge of the psychometric properties of outcome measures is of great importance when selecting for clinical practice or research. Responsiveness is particularly important for the correct interpretation of change scores in intervention trials regardless of the intervention type (e.g. drug or rehabilitation). MSJ has recently published two papers that examined the responsiveness of walking and mobility outcome measures in persons with multiple sclerosis, followed for 6 months1 and 2 years,2 respectively. Statistical analyses on responsiveness data are typically divided into distribution and anchor-based methods, the latter comparing the change scores of the outcome measures in relation to external indicators of important change. Indicators can, for instance, be self-reported change of patients and/or clinicians or can include an objective measure such as change in Expanded Disability Status Scale (EDSS). The paper of Learmonth et al. (2013) aims to measure clinically meaningful change in addition to reliability and precision in persons with various degrees of disability.1 However, the statistical outcomes they report are the standard error of measurement (SEM) and minimal detectable change (MDC; limits of change with 95% certainty), both values of measurement error based on the distribution of the sample. As the authors state, a change above these values is considered a real change surpassing the measurement error, but we do not know whether this change is clinically important. The paper of Learmonth et al. does not include an anchor-based method during the 6 months of observation, and therefore, no clinical meaningful change was established. In fact, relative and absolute reliability was shown. Also, test–retest reliability measures were applied over a 6 month observational period, which is unusual when purely investigating test performance variance over sessions. One would expect that part of the sample would experience progression and/or relapses, increasing noise in reliability measures, but the study reported no change in the SR-EDSS.3 In conclusion, the results from the study of Learmonth et al. (2013) are valuable for documentation of the measurement error of the walking measures, but the MDC values are inappropriately advocated as clinical meaningful change.

Trunk Control and Lesion Locations According to Alberta Stroke Program Early CT Score in Acute Stroke: A Cross-Sectional Study

Background: Stroke is a leading cause of disability in elderly people. Lesion location and size, and trunk control early after stroke have been found predictive of functional outcome. Trunk control is an important aspect of postural control, and commonly found to be impaired. A hemispheric difference in the regulation of postural control has been suggested, but limited knowledge of a relationship between specific lesions and trunk control exists. Objective: To explore the relationship between middle cerebral artery (MCA) lesion locations and trunk control post stroke, and compare trunk control between patients with lesions in single and multiple locations, and between left and right hemispheres. Methods: A cross-sectional design was used. Patients were recruited from a hospital stroke unit. Assessment tools: Trunk Impairment Scale–modified Norwegian version and Alberta Stroke Program Early CT Score (ASPECTS). Statistics: Descriptive, Independent t-test, Mann-Whitney’s U-test, Chi-Square test. Results:109 patients with first time middle cerebral artery lesions were included, 71 with multiple and 38 with single ASPECT locations. Trunk control was poorer in multiple (median 8.0) than in single (median 11.0) lesion locations, P=0.011. The most common single lesion locationswereM5 (50%) and internal capsule (18.4%). M5 is situated in the anterior parts of the MCA territory and hypothesized to represent sensory and motor areas of the cortex. Patients with lesions of M5 locations in the right hemisphere achieved poorer scores on trunk control than patients with left sided locations, P=0.030. Conclusions: The results indicate that patients with lesions in multiple ASPECT locations have poorer trunk control than patients with single locations, and that trunk control is poorer after single right M5 lesions as compared to left. We recommend therapists to have specific attention towards trunk control in rehabilitation of patients with MCA lesions and especially with a right M5 location early post stroke.

The economic impact of multiple sclerosis to the patients and their families in Norway

BackgroundMultiple sclerosis (MS) imposes high economic costs on society, but the patients and their families have to bear some of these costs.ObjectiveWe aimed to estimate the magnitude of these economic costs in Norway.MethodWe collected data through a postal questionnaire survey targeting 922 MS patients in Hordaland County, western Norway, in 2013–2014; 546 agreed to participate and were included. The questionnaire included clinical and demographic characteristics, volume and cost of MS-related resource use, work participation, income, government financial support, and disability status.ResultsThe mean annual total economic costs for the patients and their families were €11,603. Indirect costs accounted for 66% and were lower for women than for men. The direct costs were nearly identical for men and women. The costs increased up to Expanded Disability Status Scale score 6 except for steps between 3 and 4 where it remained nearly constant. The costs reduced from EDSS 6 to 8, and increased from 8 to 9. Lifetime costs ranged from €24,897 to €70,021 for patients with late disease onset and slow progression, and between €441,934 and €574,860 for patients with early onset and rapid progression.ConclusionThe economic costs of MS impose a heavy burden on the patients and their families. Supplementing the information on the cost of MS to society, our finding should be included as background information in decisions on reimbursing and allocating public resources for the well-being of MS patients and their families.