Jenny Freeman

Treatment of progressive multiple sclerosis: what works, what does not, and what is needed

Disease-modifying drugs have mostly failed as treatments for progressive multiple sclerosis. Management of the disease therefore solely aims to minimise symptoms and, if possible, improve function. The degree to which this approach is based on empirical data derived from studies of progressive disease or whether treatment decisions are based on what is known about relapsing-remitting disease remains unclear. Symptoms rated as important by patients with multiple sclerosis include balance and mobility impairments, weakness, reduced cardiovascular fitness, ataxia, fatigue, bladder dysfunction, spasticity, pain, cognitive deficits, depression, and pseudobulbar affect; a comprehensive literature search shows a notable paucity of studies devoted solely to these symptoms in progressive multiple sclerosis, which translates to few proven therapeutic options in the clinic. A new strategy that can be used in future rehabilitation trials is therefore needed, with the adoption of approaches that look beyond single interventions to concurrent, potentially synergistic, treatments that maximise what remains of neural plasticity in patients with progressive multiple sclerosis.

The development of ICF Core Sets for multiple sclerosis: results of the International Consensus Conference.

To systematically and comprehensively describe functioning and disability in Multiple sclerosis (MS), practical tools based on the International Classification of Functioning, Disability and Health (ICF), such as ICF Core Sets, are needed. Objective: to report on the results of an evidence-based International Consensus Conference to develop the Comprehensive and Brief ICF Core Set for MS. A formal and iterative decision-making and consensus process was undertaken, involving the integration of evidence from preparatory studies (expert survey, systematic literature review, qualitative study, empirical cross-sectional study) and expert opinion. The decision-making and consensus process included discussions and voting in working groups and plenary sessions involving selected international experts from different health professions. Twenty-one experts from 16 countries selected 138 ICF categories for the Comprehensive ICF Core for MS (40 Body functions, 7 Body structures, 53 Activities and Participation categories and 38 Environmental factors) and 19 categories for the Brief ICF Core Set for MS (8 Body functions, 2 Body structures, 5 Activities and Participation categories, 4 Environmental factors). An evidence-based and formal decision-making consensus process led to the approval of ICF Core Sets for MS which should be further validated.

USING THE SHORT FORM-36 WITH MULTIPLE SCLEROSIS PATIENTS IN FIVE COUNTRIES: A CROSS-CULTURAL COMPARISON

Questionnaires measuring health-related quality of life are increasingly used in international studies of medical effectiveness. It is important to know if data from these instruments are comparable across countries. We initiated a collaboration among five research groups—from the USA, The Netherlands, Belgium, France, and the UK—in the field of health-related quality of life in multiple sclerosis. All groups used the 36-item Short Form Health Survey. The goal of our study was to make a cross-cultural comparison. In the five countries under study the sample size varied from 50 to 134 patients with multiple sclerosis. The survey was completed by a total of 457 patients, who were heterogeneous in relation to age, duration of illness, severity and type of multiple sclerosis. There appeared to be major differences among the samples in scores on each of the eight scales. These findings may be influenced by differences in method of recruitment, demographic and disease-related characteristics, administration, and cultural factors. After having performed a number of analyses, it appeared that the differences were mainly attributable to sampling effects; however, cultural influences could not be excluded.

Foot and ankle impairments affect balance and mobility in stroke (FAiMiS): the views and experiences of people with stroke

Abstract Purpose: To explore the nature and impact of foot and ankle impairments on mobility and balance in community-dwelling, chronic stroke survivors. Methods: A qualitative research design using face to face semi-structured, audio recorded interviews. Thirteen community-dwelling stroke survivors, all of whom had self-reported foot and ankle impairments, were interviewed (female nu2009=u20096, mean ageu2009=u200967 years, SDu2009=u200912 years, mean time since strokeu2009=u20094 years, SDu2009=u20096 years, right stroke nu2009=u20097, left stroke nu2009=u20096). A framework analysis approach was used to analyse and interpret transcribed interviews. Results: Three themes emerged: (1) Impact. The influence of foot and ankle impairments on mobility and balance. (2) Standing out. How participants felt they “stood out” because of their impairments and wanted to be normal. (3) Help. The specific help and advice participants received in managing their problems. Conclusions: Foot and ankle impairments such as pain, altered somatosensory input and weakness significantly contribute to problems with community ambulation, balance and fear of falling in people with chronic stroke. Specific foot and ankle impairments may also negatively contribute to perceptions of physical appearance and self-esteem. Therapeutic management approaches within clinical practice appear to focus mostly on the gross performance of the lower limb with little emphasis on the specific assessment or treatment of the foot or ankle. Implications for Rehabilitation Foot pain, sensory impairments and muscle weakness in the foot and ankle can impact on community ambulation, balance and fear of falling following stroke. Foot and ankle function post-stroke should be routinely assessed and monitored. Clinicians should be aware of the potentially distressing negative perceptions associated with altered gait patterns, footwear and orthotic use.

Fall risk in people with MS: A Physiological Profile Assessment study

Introduction The Physiological Profile Assessment (PPA) is used in research and clinical practice for assessing fall risk. We compared PPA test performance between people with multiple sclerosis (MS) and healthy controls, determined the fall-risk profile for people with MS and developed a reference database for people with MS. Methods For this study, 416 ambulant people with MS (51.5u2009±u200912.0 years) and 352 controls (52.8u2009±u200912.2 years) underwent the PPA (tests of contrast sensitivity, proprioception, quadriceps strength, reaction time and sway) with composite fall-risk scores computed from these measures. MS participants were followed prospectively for falls for 3 months. Results The MS participants performed significantly worse than controls in each PPA test. The average composite fall-risk score was also significantly elevated, indicating a “marked” fall risk when compared with controls. In total, 155 MS participants (37.3%) reported 2u2009+u2009falls in the follow-up period. Frequent fallers performed significantly worse than non-frequent fallers in the contrast sensitivity, reaction time and sway tests and had higher PPA composite scores. Conclusions In line with poor PPA test performances, falls incidence in people with MS was high. This study provides comprehensive reference data for the PPA measures for people with MS that could be used to inform future research and clinical practice.

The organisation of physiotherapy for people with multiple sclerosis across Europe: a multicentre questionnaire survey

BackgroundUnderstanding the organisational set-up of physiotherapy services across different countries is increasingly important as clinicians around the world use evidence to improve their practice. This also has to be taken into consideration when multi-centre international clinical trials are conducted. This survey aimed to systematically describe organisational aspects of physiotherapy services for people with multiple sclerosis (MS) across Europe.MethodsRepresentatives from 72 rehabilitation facilities within 23 European countries completed an online web-based questionnaire survey between 2013 and 2014. Countries were categorised according to four European regions (defined by United Nations Statistics). Similarities and differences between regions were examined.ResultsMost participating centres specialized in rehabilitation (82xa0%) and neurology (60xa0%), with only 38xa0% specialising in MS. Of these, the Western based Specialist MS centres were predominately based on outpatient services (median MS inpatient ratio 0.14), whilst the Eastern based European services were mostly inpatient in nature (median MS inpatient ratio 0.5). In almost all participating countries, medical doctors - specialists in neurology (60xa0%) and in rehabilitation (64xa0%) - were responsible for referral to/prescription of physiotherapy. The most frequent reason for referral to/prescription of physiotherapy was the worsening of symptoms (78xa0% of centres). Physiotherapists were the most common members of the rehabilitation team; comprising 49xa0% of the team in Eastern countries compared to approximately 30xa0% in the rest of Europe. Teamwork was commonly adopted; 86xa0% of centres based in Western countries utilised the interdisciplinary model, whilst the multidisciplinary model was utilised in Eastern based countries (pu2009=u20090.046).ConclusionThis survey is the first to provide data about organisational aspects of physiotherapy for people with MS across Europe. Overall, care in key organisational aspects of service provision is broadly similar across regions, although some variations, for example the models of teamwork utilised, are apparent. Organisational framework specifics should be considered anytime a multi-centre study is conducted and results from such studies are applied.

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.

Validity of the activPAL3 activity monitor in people moderately affected by Multiple Sclerosis.

Walking is the primary form of physical activity performed by people with Multiple Sclerosis (MS), therefore it is important to ensure the validity of tools employed to measure walking activity. The aim of this study was to assess the criterion validity of the activPAL3 activity monitor during overground walking in people with MS. Validity of the activPAL3 accelerometer was compared to video observation in 20 people moderately affected by MS. Participants walked 20-30m twice along a straight quiet corridor at a comfortable speed. Inter-rater reliability of video observations was excellent (all intraclass correlations >0.99). The mean difference (activPAL3- mean of raters) was -4.70±9.09, -4.55s±10.76 and 1.11s±1.11 for steps taken, walking duration and upright duration respectively. These differences represented 8.7%, 10.0% and 1.8% of the mean for each measure respectively. The activPAL3 tended to underestimate steps taken and walking duration in those who walked at cadences of ≤38 steps/min by 60% and 47%, respectively. The activPAL3 is valid for measuring walking activity in people moderately affected by MS. It is accurate for upright duration regardless of cadence. In participants with slow walking cadences, outcomes of steps taken and walking duration should be interpreted with caution.

Physiotherapeutic interventions in multiple sclerosis across Europe: Regions and other factors that matter

BACKGROUNDnA wide variety of interventions exists in physical therapy (PT), but knowledge about their use across different geographical regions is limited. This study investigated the use of PT interventions in people with multiple sclerosis (MS) across Europe. It aimed to determine whether regions differ in applying interventions, and explore whether factors other than regions play a role in their use.nnnMETHODSnIn an online cross-sectional survey, 212 respondents from 115 European workplaces providing PT services to people with MS representing 26 countries (four European regions) participated. Cluster analysis, Pearson Chi-squared test and a Poisson regression model were used to analyze the data.nnnRESULTSnThirteen of 45 listed PT interventions were used by more than 75% of centers, while nine interventions were used by less than 25%. For 12 interventions, regions differed markedly in their use. Cluster analysis of centers identified four clusters similar in their intervention use. Cluster assignment did not fully align with regions. While center region was important, center size, number and gender of physical therapists working in the center, and time since qualification also played a role. Cluster analysis exploring the use of the interventions provided the basis for a categorization of PT interventions in line with their primary focus: 1. Physical activity (fitness/endurance/resistance) training; 2. Neuroproprioceptive facilitation/inhibition; 3. Motor/skill acquisition (individualized therapy led); 4. Technology based interventions.nnnCONCLUSIONSnTo our knowledge this is the first study that has explored this topic in MS. The results broaden our understanding of the different PT interventions used in MS, as well as the context of their use.

The prevalence, distribution, and functional importance of lower limb somatosensory impairments in chronic stroke survivors: a cross sectional observational study.

Abstract Purpose: To investigate the prevalence and distribution of lower limb somatosensory impairments in community dwelling chronic stroke survivors and examine the association between somatosensory impairments and walking, balance, and falls. Methods: Using a cross sectional observational design, measures of somatosensation (Erasmus MC modifications to the (revised) Nottingham Sensory Assessment), walking ability (10u2009m walk test, Walking Impact Scale, Timed “Get up and go”), balance (Functional Reach Test and Centre of Force velocity), and falls (reported incidence and Falls Efficacy Scale-International), were obtained. Results: Complete somatosensory data was obtained for 163 ambulatory chronic stroke survivors with a mean (SD) age 67(12) years and mean (SD) time since stroke 29 (46) months. Overall, 56% (nu2009=u200992/163) were impaired in the most affected lower limb in one or more sensory modality; 18% (nu2009=u200930/163) had impairment of exteroceptive sensation (light touch, pressure, and pin-prick), 55% (nu2009=u200990/163) had impairment of sharp-blunt discrimination, and 19% (nu2009=u200931/163) proprioceptive impairment. Distal regions of toes and foot were more frequently impaired than proximal regions (shin and thigh). Distal proprioception was significantly correlated with falls incidence (ru2009=u20090.25; pu2009<u20090.01), and centre of force velocity (ru2009=u20090.22, pu2009<u20090.01). The Walking Impact Scale was the only variable that significantly contributed to a predictive model of falls accounting for 15–20% of the variance. Conclusion: Lower limb somatosensory impairments are present in the majority of chronic stroke survivors and differ widely across modalities. Deficits of foot and ankle proprioception are most strongly associated with, but not predictive, of reported falls. The relative contribution of lower limb somatosensory impairments to mobility in chronic stroke survivors appears limited. Further investigation, particularly with regard to community mobility and falls, is warranted. Implications for Rehabilitation Somatosensory impairments in the lower limb were present in approximately half of this cohort of chronic stroke survivors. Tactile discrimination is commonly impaired; clinicians should include an assessment of discriminative ability. Deficits of foot and ankle proprioception are most strongly associated with reported falls. Understanding post-stroke lower limb somatosensory impairments may help inform therapeutic strategies that aim to maximise long-term participation, minimise disability, and reduce falls.