Performance of Activities of daily living in people with multiple sclerosis.

OBJECTIVE: Multiple sclerosis (MS) may result in activity and participation limitations, including the performance of activities of daily living (ADL). This study aims at systematically investigate ADL performance by using Assessment of Motor and Process Skills (AMPS) in people with MS (PwMS) of all disease types and within the Kurtzke Expanded Disability Status Scale (EDSS) range from 1.0 - 8.0. METHODS: Eight multiple sclerosis (MS) centres participated in data collection of a consecutive sample of PwMS. Participants were referred for assessment to occupational therapy (OT) by treating physician or recruited from neurology department in each hospital and assessed by EDSS and AMPS. The AMPS is an observational, criterion referenced ADL assessment, providing values for a person's ADL performance in terms of motor and process skills. Criterion referenced cut-off scores were established at 2.0 for motor skills and at 1.0 for process skills and both values above the cut-off score indicate competent (independent, safe, efficient and effortless) ADL performance. Process skills refer to the act of carrying out a series of actions and is summarized in terms of efficiency, like initiating without pauses, continuing actions through to completion, performing actions in logical order (sequences), choosing, and completing the task as planned (heeds). RESULTS: Two hundred and ten PwMS were recruited (48 +/- 13 years of age, 145 women/65 men, average disease duration was 11.8 +/- 9.6 years, average EDSS was 4.8+/-1.8). Average motor skills score was 1.01+/- 1.12 (indicating need for assistance with evidence of increased clumsiness/physical effort) and average process skills score was 1.02 +/- 0.66 (risk zone, questionable efficiency and more likely to need assistance). Overall, motor skills and process skills decreased with increasing EDSS score. No need for assistance in motor skills was indicated in subjects with lower EDSS scores (1.0 - 2.5). In higher EDSS group (≥4.5), 57% of subjects needed assistance in motor skills and 27% in process skills. The competency in process skills was either questionable or reduced within all EDSS scores. However, 33-38% of subjects with higher EDSS scores (6.0-8.5) showed competent performance in process skills. Overall correlation between motor and process scores was moderate (r = 0.56, p<0.0001), but no significant relationships between motor and process skills were found in the lower EDSS (1-2.5) and high EDSS scores (8-8.5). Further, EDSS and disease type were significant predictors, explaining 52.7% of motor skills and 22.3% of process skills performance. CONCLUSION: Problems in ADL performance were found in EDSS categories 1.0 to 8.0 and in all disease types, therefore it is advisable to screen all PwMS for ADL deficits and provide relevant rehabilitation interventions.

Assessing life balance of European people with multiple sclerosis: A multicenter clinimetric study within the RIMS network.

BACKGROUND: Life balance is defined as "a satisfying pattern of daily activity that is healthful, meaningful, and sustainable to an individual within the context of his or her current life circumstances". To assess life balance, the self-report instrument Life Balance Inventory (LBI) has been developed in the US. The aim of this study was to evaluate cross-cultural, construct validity and test-retest reliability of translated versions of the LBI in people with multiple sclerosis (MS) within different European cultures (Dutch, Flemish, Slovenian, and Spanish). METHOD: The LBI was translated according to the principles of forward/backward translation and the cultural adaption process of patient-reported outcomes and evaluated in people with MS in each country/language area. LBI (score range 1-3; higher scores refer to better balance) was registered twice with an interval of 7 days to evaluate test-retest reliability using Intraclass Correlation Coefficients (ICCs) and Bland Altman analyses. To evaluate construct validity, Pearson correlations of the LBI with quality of life, fatigue, depression and self-efficacy were explored. RESULTS: The total sample (n = 313, 50 ± 11 years of age, MS duration 13 ± 8 years) consisted of five subsamples: Dutch (n = 81, 74% women, 54 ± 9.6 years of age), Flemish 1 (n = 42, 57% women, 49 ± 12 years), Flemish 2 (n = 105, 63% women, 50 ± 10.6 years), Slovenian (n = 48, 79% women, 44 ± 11.2 years) and Spanish (n = 37, 62% women, 47 ± 9.0 years). Baseline total LBI scores differed between subsamples (F(4, 312)=7.19, p < 0.001). ICC [95% CI] of total LBI was 0.88 [0.83-0.92] (Flemish 2), 0.65 [0.39-0.82] (Flemish 1), 0.55 [0.37-0.69] (Dutch), 0.45 [0.15-0.67] (Spanish) and 0.35 [0.07-0.59] (Slovenian). Systematic error was present in one sample; no proportional bias occurred. Correlations ranged from 0.05 to 0.55 for quality of life and self-efficacy, from -0.50 to 0.05 for fatigue and from -0.44 to -0.28 for depression, not fully supporting the hypotheses. CONCLUSION: The study results provide limited support for test-retest reliability, cross-cultural and construct validity of the LBI in different European subsamples. Although LBI may serve as a supportive tool in goalsetting in rehabilitation, the current version of LBI is not recommended for (international) research purposes.

Towards the concept of disease-modifier in post-stroke or vascular cognitive impairment: a consensus report.

BACKGROUND: Vascular cognitive impairment (VCI) is a complex spectrum encompassing post-stroke cognitive impairment (PSCI) and small vessel disease-related cognitive impairment. Despite the growing health, social, and economic burden of VCI, to date, no specific treatment is available, prompting the introduction of the concept of a disease modifier. CONSENSUS AND SUGGESTIONS: Within this clinical spectrum, VCI and PSCI remain advancing conditions as neurodegenerative diseases with progression of both vascular and degenerative lesions accounting for cognitive decline. Disease-modifying strategies should integrate both pharmacological and non-pharmacological multimodal approaches, with pleiotropic effects targeting (1) endothelial and brain-blood barrier dysfunction; (2) neuronal death and axonal loss; (3) cerebral plasticity and compensatory mechanisms; and (4) degenerative-related protein misfolding. Moreover, pharmacological and non-pharmacological treatment in PSCI or VCI requires valid study designs clearly stating the definition of basic methodological issues, such as the instruments that should be used to measure eventual changes, the biomarker-based stratification of participants to be investigated, and statistical tests, as well as the inclusion and exclusion criteria that should be applied. CONCLUSION: A consensus emerged to propose the development of a disease-modifying strategy in VCI and PSCI based on pleiotropic pharmacological and non-pharmacological approaches.

On the assessment of coordination between upper extremities: towards a common language between rehabilitation engineers, clinicians and neuroscientists.

Well-developed coordination of the upper extremities is critical for function in everyday life. Interlimb coordination is an intuitive, yet subjective concept that refers to spatio-temporal relationships between kinematic, kinetic and physiological variables of two or more limbs executing a motor task with a common goal. While both the clinical and neuroscience communities agree on the relevance of assessing and quantifying interlimb coordination, rehabilitation engineers struggle to translate the knowledge and needs of clinicians and neuroscientists into technological devices for the impaired. The use of ambiguous definitions in the scientific literature, and lack of common agreement on what should be measured, present large barriers to advancements in this area. Here, we present the different definitions and approaches to assess and quantify interlimb coordination in the clinic, in motor control studies, and by state-of-the-art robotic devices. We then propose a taxonomy of interlimb activities and give recommendations for future neuroscience-based robotic- and sensor-based assessments of upper limb function that are applicable to the everyday clinical practice. We believe this is the first step towards our long-term goal of unifying different fields and help the generation of more consistent and effective tools for neurorehabilitation.

Living with Parkinson's and the Emerging Role of Occupational Therapy.

Parkinson's disease is a chronic and increasingly complex condition, demanding multidisciplinary management. Over the last twenty years or so, alongside the growth of specialist services and healthcare teams specifically developed for people with Parkinson's, occupational therapy has grown in recognition as a treatment option, especially since evidence of its efficacy is now slowly emerging. The purpose of this work is to outline the role of occupational therapy clinical practice in the management of people living with Parkinson's disease and its emergent evidence base, combined with details of current occupational therapy philosophy and process, as applicable to occupational therapy practice for people with Parkinson's. The Canadian Practice Process Framework is used to structure this overview and was selected because it is a well-recognized, evidence-based tool used by occupational therapists and encompasses the core concepts of human occupation and person-centred practice. The framework employed allows the flexibility to reflect the pragmatic occupational therapy intervention process and so enables the illustration of the individually tailored approach required to accommodate to the complex pathology and personal, domestic, and social impacts, affecting the functioning of Parkinson's disease patients on a daily basis.

An evaluation of the Extended Barthel Index with acute ischemic stroke patients.

OBJECTIVE: To evaluate the Extended Barthel Index with acute ischemic stroke patients. METHODS: This prospective 1- to 6-week poststroke follow-up study was carried out using 33 newly diagnosed acute ischemic stroke patients who were admitted to the University Medical Centre Ljubljana, Department of Neurology. Measures used were Barthel Index (BI), Extended Barthel Index (EBI), Fugl-Meyer Motor Impairment Scale, 1-5 Self-Assessment scale, Rivermead Behavioural Memory Test. RESULTS: The EBI is a reliable scale in terms of internal consistency. The cognitive part is less reliable than the physical part of the EBI. It is a 3-dimensional scale as calculated by factor analysis (factor 1 with eigen value 8.2, factor 2 with eigen value 2.7 and factor 3 with eigen value 0.9). Criterion validity to the BI and the Fugl-Meyer Motor Impairment Scale was supported (P=0.1-0.001). External validity to the Self-Assessment scale was also supported (P<0.001). It is more sensitive to the changes in functional status that occur in the 1st 6 weeks poststroke than the original BI, although the ceiling effect was not really explained in this follow-up period. CONCLUSION: The EBI is a valid, reliable, 2- to 3-dimensional outcome measure of disability/activity for stroke patients. To some extent, it also reveals the level of patients' perception of their functional status.