Perceived and physiological strains of societal participation in people with multiple sclerosis: a real-time assessment study.

OBJECTIVE: To examine the relationship between perceived and physiological strains of real-time societal participation in people with multiple sclerosis. DESIGN: Observational study. SUBJECTS/PATIENTS: 70 people with multiple sclerosis. METHODS: Perceived and physiological strain of societal participation (10 participation-at-location and 9 transport domains) were measured in real time using the Whereabouts smartphone app and Fitbit over 7 consecutive days. Longitudinal relationships between perceived (1 not strenuous to 10 most strenuous) and physiological strains (heart rate reserve) were examined using mixed-model analyses. Type of event (participation-at-location or transport) was added as covariate, with further adjustments for fatigue and walking ability. RESULTS: Median perceived strain, summarized for all societal participation domains, varied between 3 and 6 (range: 1-10), whereas physiological strain varied between 18.5% and 33.2% heart rate reserve. Perceived strain (outcome) and physiological strain were not associated (ß -0.001, 95%CI -0.008; 0.005, with a 7-day longitudinal correlation coefficient of -0.001). Transport domains were perceived as less strenuous (ß -0.80, 95%CI -0.92; -0.68). Higher fatigue levels resulted in higher perceived strain (all societal participation domains) (ß 0.05, 95%CI 0.02; 0.08). CONCLUSION: Societal participation resulted in low-to-moderate perceived and physiological strain. Perceived and physiological strain of societal participation were unrelated and should be considered different constructs in multiple sclerosis.

Dispositivo de neuromodulación portátil para la ayuda a la marcha en Esclerosis Múltiple / Portable neuromodulation stimulator device to improve gait in Multiple Sclerosis

• La Esclerosis Múltiple (EM) es una enfermedad neurodegenerativa y autoinmune, que se caracteriza por la presencia de desmielinización inflamatoria con afectación en la conducción axonal a diferentes niveles del sistema nervioso central. • La sintomatología de la EM es muy variada, y puede provocar prácticamente cualquier síntoma neurológico atribuible a una lesión del SNC. Los problemas motores son percibidos como especialmente incapacitantes por pacientes y cuidadores. • El dispositivo de neuromodulación portátil PoNS™ es un dispositivo de estimulación translingual, compacto y no implantable, que administra una leve estimulación eléctrica a las fibras nerviosas aferentes situadas en la superficie dorsal de la lengua, a través de pequeños electrodos. El dispositivo PoNS™ se ha utilizado en combinación con sesiones de entrenamiento de la marcha realizadas por fisioterapeutas. • La evidencia científica disponible actualmente sobre el dispositivo de neuromodulación portátil PoNS™ para la ayuda a la marcha en EM es muy limitada para extraer conclusiones robustas sobre sus efectos, principalmente debido a los pocos estudios realizados y a sus pequeños tamaños muestrales (34 participantes en total). • En los dos ensayos controlados aleatorizados identificados en este informe, las personas que utilizan el dispositivo PoNS™, en combinación con un programa individualizado de fisioterapia, mejoran de forma significativa su patrón de marcha tras 14 semanas de intervención. Sin embargo, sólo en uno de ellos, esa mejoría fue significativamente superior a la obtenida con estimulación simulada y fisioterapia. • En general, la evidencia disponible destaca la vialidad y seguridad del uso del dispositivo PoNS™, sin embargo, se requieren ensayos clínicos de calidad, independientes de la industria y con muestras de tamaño apropiado, para determinar su eficacia como complemento de los programas de rehabilitación de la marcha en personas con EM.

• Multiple sclerosis (MS) is an autoimmune-mediated neurodegenerative disease characterized by inflammatory demyelination with axonal transection at different levels of the central nervous system. • There is a wide range of symptoms associated with MS, and it can cause pretty much any neurological symptom caused by a central nervous system lesion. Patients and caregivers perceive motor problems as particularly disabling. • The PoNS™ device is a non-implantable, translingual stimulation device that uses small electrodes to provide mild electrical stimulation to afferent nerve fibers located on the dorsal surface of the tongue. The PoNS™ device has been used in conjunction with gait training sessions conducted by physiotherapists. • The current scientific evidence on the PoNS™ device for gait assistance in MS is too limited to draw robust conclusions about its effects, mainly due to the few studies conducted and the small sample sizes (34 participants in total). • Two randomized controlled trials identified in this report found that people using the PoNS™ device with an individualized physical therapy program significantly improved their gait pattern after 14 weeks. In only one of them, however, this improvement was significantly greater than the obtained with simulated stimulation and physiotherapy. • The available evidence indicates that the PoNS™ device is both feasible and safe. However, high-quality, industry-independent clinical trials with appropriate sample size are required to determine whether it is an effective adjunct to gait rehabilitation programs in people with MS.

Telerehabilitation benefits patients with multiple sclerosis in an urban setting.

INTRODUCTION: People living with multiple sclerosis (MS) often require rehabilitation to manage their symptoms. Telerehabilitation offers improved access to treatment options by reducing travel time and cost. Our telerehabilitation program pairs training exercises simultaneously with transcranial direct current stimulation (tDCS), a non-invasive brain stimulation technique. In the current study, we characterized the benefits of our remotely supervised tDCS (RS-tDCS) at-home telerehabilitation protocol in an urban sample of MS participants. METHODS: Participants with MS were recruited to complete a telerehabilitation trial using tDCS paired with cognitive rehabilitation at-home using remote supervision (RS-tDCS). Participant time and travel costs for study visits to our clinic in midtown New York City were calculated. RESULTS: Forty-four patients with MS (aged 18 to 71) with mild to severe neurologic disability (Expanded Disability Status Scale score median = 3.5, range: 0.0 to 8.0) completed the survey. Round-trip clinic attendance required 2.3 ± 2.3 h and US $27.04 ± 38.13 for out-of-pocket expenses. Participants rated difficulty of clinic attendance as moderately to significantly difficult (2.5 ± 1.3). Severity of neurologic disability accounted for the greatest variance in difficulty attending clinic (30%, p < 0.001). RS-tDCS had 95% treatment compliance and 93% of participants reported satisfaction with the at-home treatment. DISCUSSION: Attending clinic is associated with significant costs for patients with neurologic disorders, even in urban settings. Rehabilitation can be delivered at home and supervised in real-time via videoconference.

Vestibular rehabilitation in multiple sclerosis: study protocol for a randomised controlled trial and cost-effectiveness analysis comparing customised with booklet based vestibular rehabilitation for vestibulopathy and a 12 month observational cohort study of the symptom reduction and recurrence rate following treatment for benign paroxysmal positional vertigo.

BACKGROUND: Symptoms arising from vestibular system dysfunction are observed in 49-59% of people with Multiple Sclerosis (MS). Symptoms may include vertigo, dizziness and/or imbalance. These impact on functional ability, contribute to falls and significant health and social care costs. In people with MS, vestibular dysfunction can be due to peripheral pathology that may include Benign Paroxysmal Positional Vertigo (BPPV), as well as central or combined pathology. Vestibular symptoms may be treated with vestibular rehabilitation (VR), and with repositioning manoeuvres in the case of BPPV. However, there is a paucity of evidence about the rate and degree of symptom recovery with VR for people with MS and vestibulopathy. In addition, given the multiplicity of symptoms and underpinning vestibular pathologies often seen in people with MS, a customised VR approach may be more clinically appropriate and cost effective than generic booklet-based approaches. Likewise, BPPV should be identified and treated appropriately. METHODS/ DESIGN: People with MS and symptoms of vertigo, dizziness and/or imbalance will be screened for central and/or peripheral vestibulopathy and/or BPPV. Following consent, people with BPPV will be treated with re-positioning manoeuvres over 1-3 sessions and followed up at 6 and 12 months to assess for any re-occurrence of BPPV. People with central and/or peripheral vestibulopathy will be entered into a randomised controlled trial (RCT). Trial participants will be randomly allocated (1:1) to either a 12-week generic booklet-based home programme with telephone support or a 12-week VR programme consisting of customised treatment including 12 face-to-face sessions and a home exercise programme. Customised or booklet-based interventions will start 2 weeks after randomisation and all trial participants will be followed up 14 and 26 weeks from randomisation. The primary clinical outcome is the Dizziness Handicap Inventory at 26 weeks and the primary economic endpoint is quality-adjusted life-years. A range of secondary outcomes associated with vestibular function will be used. DISCUSSION: If customised VR is demonstrated to be clinically and cost-effective compared to generic booklet-based VR this will inform practice guidelines and the development of training packages for therapists in the diagnosis and treatment of vestibulopathy in people with MS. TRIAL REGISTRATION: ISRCTN Number: 27374299 Date of Registration 24/09/2018 Protocol Version 15 25/09/2019.

Clinical assessment, management, and rehabilitation of walking impairment in MS: an expert review.

INTRODUCTION: One of the most common and life-altering consequences of Multiple Sclerosis (MS) is walking impairment. The distance, speed, and Gait pattern functions are components of the International Classification of Functioning, Disability, and Health (ICF) and are also predictors of dependency in terms of daily living activities in patients with MS (pwMS). AREAS COVERED: This article provides an overview of walking impairment in pwMS, with focus on the assessment of gait and the rehabilitation approaches. EXPERT OPINION: The authors recommend that pwMS undergo gait assessment integrating the ICF perspective using validated clinical outcome measures that cover spatiotemporal gait parameters. Moreover, assessment of walking speed with short walking capacity tests such as the timed 25-foot walk (T25FW) or the 10-m walk test (10 MWT) and tests for walking distance with middle distance tests such as the 2-min walk test (2MWT) and the 6-min walk test (6MWT). This review further highlights strategies that may restore walking function including pharmacological symptomatic treatment and non-pharmacological rehabilitation approaches such as exercise and task-specific training providing an appraisal of mobility targeted therapies to be considered when planning multidisciplinary comprehensive-care of pwMS. Finally, new and novel strategies such as motor imagery and rhythmic auditory stimulation have been developed to improve walking speed and distance in pwMS.

Evaluating the feasibility and preliminary efficacy of a Cognitive Occupation-Based programme for people with Multiple Sclerosis (COB-MS): protocol for a feasibility cluster-randomised controlled trial.

BACKGROUND: Cognitive difficulties experienced by people with multiple sclerosis (MS) impact their quality of life and daily functioning, from childcare and work, to social and self-care activities. Despite the high prevalence of cognitive difficulties seen in MS, there is a lack of developed programmes that target cognition, while also supporting patients by helping them to function well in everyday life. The Cognitive Occupation-Based programme for people with MS (COB-MS) was developed as a holistic, individualised cognitive rehabilitation intervention. It addresses the wide-ranging symptoms and functional difficulties that present in MS, including the ability to maintain employment, social activities, home management and self-care. The aim of the current research is to evaluate the feasibility and preliminary efficacy of COB-MS for people with MS. The focus is on feasibility outcomes as well as functioning associated with cognitive difficulty and secondary outcomes related to cognition, fatigue and quality of life. METHODS: One hundred and twenty people with MS will be assigned to participate in either the COB-MS programme or a treatment as usual, wait-list control group as part of this single-blind, cluster-randomised controlled feasibility and preliminary efficacy trial of the COB-MS programme. The COB-MS group will participate in an eight-session occupational-based cognitive rehabilitation programme over 9 weeks. The primary outcome measure is the goal attainment scaling at 12 weeks. Participants will be assessed pre-intervention, post-intervention and at 12 weeks post-intervention and 6 months post-intervention. Qualitative evaluations of participants' perspectives will also be examined as part of the feasibility study. DISCUSSION: Results will provide recommendations for a future definitive trial of COB-MS, with respect to both feasibility and preliminary, clinical efficacy. In the event that results indicate efficacy, study findings will suggest that COB-MS requires consideration as a means of enhancing cognitive and daily functioning in people living with MS. TRIAL REGISTRATION: ISRCTN: ISRCTN11462710. Registered on 9 September 2019.

Physiotherapy assessment of individuals with multiple sclerosis prior to a group intervention - A qualitative observational and interview study.

Assessment prior to both individual and group interventions is fundamental to neurological physiotherapy practice. However, knowledge is limited regarding how assessments are carried out, particularly assessments conducted prior to group interventions, which have recently gained increasing attention in clinical research. In this qualitative study, we investigated how physiotherapy assessments of patients with multiple sclerosis prior to a group exercise intervention were carried out and what physiotherapists considered vital elements in the assessment process. Data were gathered through 12 qualitative non-participatory video observations followed by in-depth interviews of physiotherapists. Systematic text condensation analysis was conducted within an enactive theoretical framework of participatory sense making. In the assessments, patients' bodily perceptions of movement changes appeared to be vital in establishing patient expectations for the forthcoming intervention. The extent of patient participation and an embodied approach to communication influenced both the physiotherapists' and patients' insights into the patients' movement problems, which were further utilized in the initial intervention planning. Significant differences in context from the assessment to the intervention require a systematic completion of the assessments in the course of the first clinical meeting, which should be considered in the further development of research and clinical practices.

[Medical Rehabilitation in MS: Barriers to and Facilitators of its Utilization from the Patients' Perspective]. / Medizinische Rehabilitation bei MS: Barrieren und Facilitatoren der Inanspruchnahme aus Patientensicht.

PURPOSE: Although there is evidence on the efficacy of multi-disciplinary rehabilitation in the case of MS, use of inpatient rehabilitation by patients with MS in Germany is comparatively low. Therefore, it was the aim of this study to determine potential barriers and facilitators of inpatient rehabilitation use as perceived by patients with MS. METHODS: Based on an extensive preliminary qualitative study a questionnaire was developed that addressed potential determinants of inpatient rehabilitation use by means of 45 items. Data were obtained mainly online from 590 patients with MS. Data analysis primarily included descriptive statistics. RESULTS: Patients' expectations regarding rehabilitation in the case of MS strongly focus on structural components of a rehabilitation clinic's quality and on participating in treatment decisions in the rehab setting. Barriers to MS-rehabilitation use are perceived to exist in terms of insufficient information on the scope and process of rehabilitation, insufficient support from physicians with respect to applying for rehabilitation and a lack of clarity with respect to the criteria upon which applications will be decided. A smaller proportion of respondents also consider family- and vocation-related factors as barriers to making use of MS-rehabilitation. CONCLUSION: Based on these findings, recommendations may be derived that may help reduce barriers to the use of inpatient rehabilitation by patients with MS. These include providing and improving information on the aims, interventions and effects of MS rehabilitation, information on how to apply for medical rehabilitation and the criteria on which applications are decided upon, as well as strengthening the role of the outpatient medical specialist.

Cognitive rehabilitation for attention and memory in people with multiple sclerosis: a randomized controlled trial (CRAMMS).

OBJECTIVE: To assess the clinical and cost-effectiveness of cognitive rehabilitation for attention and memory problems in people with multiple sclerosis. DESIGN: Multicentre, pragmatic, randomized controlled trial. SETTING: Community. PARTICIPANTS: People with multiple sclerosis aged 18-69 years, who reported cognitive problems in daily life and had cognitive problems on standardized assessment. INTERVENTIONS: A group cognitive rehabilitation programme delivered in 10 weekly sessions in comparison with usual care. MAIN MEASURES: The primary outcome was the Multiple Sclerosis Impact Scale Psychological subscale at 12 months after randomization. Secondary outcomes included measures of everyday memory problems, mood, fatigue, cognitive abilities and employment at 6 and 12 months after randomization. RESULTS: In all, 245 participants were allocated to cognitive rehabilitation and 204 to usual care. Mean Multiple Sclerosis Impact Scale Psychological at 12 months was 22.2 (SD = 6.1) for cognitive rehabilitation and 23.4 (SD = 6.0) for usual care group; adjusted difference -0.6, 95% confidence interval (CI) = -1.5 to 0.3, P = 0.20. No differences were observed in cognitive abilities, fatigue or employment. There were small differences in favour of cognitive rehabilitation for the Multiple Sclerosis Impact Scale Psychological at 6 months and everyday memory and mood at 6 and 12 months. There was no evidence of an effect on costs (-£808; 95% CI = -£2248 to £632) or on quality-adjusted life year gain (0.00; 95% CI = -0.01 to 0.02). CONCLUSION: This rehabilitation programme had no long-term benefits on the impact of multiple sclerosis on quality of life, but there was some evidence of an effect on everyday memory problems and mood.

Review of the novelties presented at the 2018 ECTRIMS Congress: 11th Post-ECTRIMS Meeting (II). / Revision de las novedades presentadas en el Congreso ECTRIMS 2018: XI Reunion Post-ECTRIMS (II).

The Post-ECTRIMS Meeting was held for the eleventh consecutive year in October 2018 in Madrid, with the aim of analysing the advances made in multiple sclerosis that were highlighted at the latest ECTRIMS annual congress. Based on the issues discussed at this meeting, attended by the nation's foremost opinion leaders on multiple sclerosis, two review articles are presented. This second part includes the growing body of evidence confirming the safety of exposure to disease-modifying treatments in women planning a pregnancy, and the beneficial effect of breastfeeding, provided that the disease is not very active. It addresses data showing how the application of the 2017 McDonald criteria in the paediatric population has significantly improved diagnosis compared to the previous criteria. With regard to progressive multiple sclerosis, the results of neuroprotective drugs are inconclusive, but biomarkers are proposed to improve the evaluation of the therapeutic response. Studies on myelin repair treatments suggest that remyelination in multiple sclerosis is possible. Likewise, there are favourable indications for haematopoietic stem cell transplantation, provided that patients are selected appropriately. On the other hand, we also conduct a review of the similarities and differences of the recommendations in the new clinical practice guidelines. Finally, the positive results of cognitive and motor rehabilitation with the use of new technologies point to the systematic incorporation of these tools in the treatment of the disease in the near future.

TITLE: Revision de las novedades presentadas en el Congreso ECTRIMS 2018: XI Reunion Post-ECTRIMS (II).La reunion Post-ECTRIMS se celebro por undecimo año consecutivo el pasado octubre de 2018 en Madrid, con el objetivo de analizar los avances en esclerosis multiple destacados en el ultimo congreso anual ECTRIMS. Fruto de esta reunion, formada por los lideres de opinion en esclerosis multiple de ambito nacional, se presentan dos articulos de revision. En esta segunda parte, se incluye el creciente numero de evidencias que confirman la seguridad de la exposicion a los tratamientos modificadores de la enfermedad en mujeres que planifican un embarazo, y el efecto beneficioso de la lactancia, siempre y cuando la enfermedad no este muy activa. Se abordan los datos que muestran como la aplicacion de los criterios de McDonald de 2017 en poblacion pediatrica ha mejorado considerablemente el diagnostico en comparacion con los criterios anteriores. En cuanto a la esclerosis multiple progresiva, los resultados de los farmacos neuroprotectores son poco concluyentes, pero se proponen biomarcadores para mejorar la evaluacion de la respuesta terapeutica. Los estudios sobre tratamientos de reparacion de la mielina sugieren que la remielinizacion en la esclerosis multiple es posible. De igual manera, se exponen indicios favorables sobre el trasplante de celulas madre hematopoyeticas, siempre que se seleccione adecuadamente a los pacientes. Por otro lado, se revisan las similitudes y diferencias de las recomendaciones de las nuevas guias de practica clinica publicadas. Por ultimo, los resultados positivos de la rehabilitacion cognitiva y motora con el uso de las nuevas tecnologias vaticinan la incorporacion sistematica de estas herramientas en el tratamiento de la enfermedad en un futuro proximo.

The clinical- and cost-effectiveness of functional electrical stimulation and ankle-foot orthoses for foot drop in Multiple Sclerosis: a multicentre randomized trial.

OBJECTIVE: To compare the clinical- and cost-effectiveness of ankle-foot orthoses (AFOs) and functional electrical stimulation (FES) over 12 months in people with Multiple Sclerosis with foot drop. DESIGN: Multicentre, powered, non-blinded, randomized trial. SETTING: Seven Multiple Sclerosis outpatient centres across Scotland. SUBJECTS: Eighty-five treatment-naïve people with Multiple Sclerosis with persistent (>three months) foot drop. INTERVENTIONS: Participants randomized to receive a custom-made, AFO (n = 43) or FES device (n = 42). OUTCOME MEASURES: Assessed at 0, 3, 6 and 12 months; 5-minute self-selected walk test (primary), Timed 25 Foot Walk, oxygen cost of walking, Multiple Sclerosis Impact Scale-29, Multiple Sclerosis Walking Scale-12, Modified Fatigue Impact Scale, Euroqol five-dimension five-level questionnaire, Activities-specific Balance and Confidence Scale, Psychological Impact of Assistive Devices Score, and equipment and National Health Service staff time costs of interventions. RESULTS: Groups were similar for age (AFO, 51.4 (11.2); FES, 50.4(10.4) years) and baseline walking speed (AFO, 0.62 (0.21); FES 0.73 (0.27) m/s). In all, 38% dropped out by 12 months (AFO, n = 21; FES, n = 11). Both groups walked faster at 12 months with device (P < 0.001; AFO, 0.73 (0.24); FES, 0.79 (0.24) m/s) but no difference between groups. Significantly higher Psychological Impact of Assistive Devices Scores were found for FES for Competence (P = 0.016; AFO, 0.85(1.05); FES, 1.53(1.05)), Adaptability (P = 0.001; AFO, 0.38(0.97); FES 1.53 (0.98)) and Self-Esteem (P = 0.006; AFO, 0.45 (0.67); FES 1 (0.68)). Effects were comparable for other measures. FES may offer value for money alternative to usual care. CONCLUSION: AFOs and FES have comparable effects on walking performance and patient-reported outcomes; however, high drop-outs introduces uncertainty.

Oxygen Cost During Mobility Tasks and Its Relationship to Fatigue in Progressive Multiple Sclerosis.

OBJECTIVE: To compare the oxygen costs of mobility tasks between individuals with progressive multiple sclerosis (MS) using walking aids and matched controls and to determine whether oxygen cost predicted fatigue. DESIGN: Cross-sectional descriptive. SETTING: A rehabilitation research laboratory. PARTICIPANTS: A total of 14 adults with progressive MS (mean age ± SD [y], 54.07±8.46) using walking aids and 8 age- and sex-matched controls without MS (N=22). INTERVENTIONS: Participants performed 5 mobility tasks (rolling in bed, lying to sitting, sitting to standing, walking, climbing steps) wearing a portable metabolic cart. MAIN OUTCOME MEASURES: Oxygen consumption (V˙o2) during mobility tasks, maximal V˙o2 during graded maximal exercise test, perceived exertion, and task-induced fatigue were measured on a visual analog scale before and after mobility tasks. RESULTS: People with progressive MS had significantly higher oxygen cost in all tasks compared to controls (P<.05): climbing steps (3.60 times more in MS), rolling in bed (3.53), walking (3.10), lying to sitting (2.50), and sitting to standing (1.82). There was a strong, positive correlation between task-induced fatigue and oxygen cost of walking, (ρ [13]=0.626, P=.022). CONCLUSIONS: People with progressive MS used 2.81 times more energy on average for mobility tasks compared to controls. People with progressive MS experienced accumulation of oxygen cost, fatigue, and exertion when repeating tasks and higher oxygen cost during walking was related to greater perception of fatigue. Our findings suggest that rehabilitation interventions that increase endurance during functional tasks could help reduce fatigue in people with progressive MS who use walking aids.

A cohort study of functional electrical stimulation in people with multiple sclerosis demonstrating improvements in quality of life and cost-effectiveness.

OBJECTIVE: The objective of this study was to determine the impact on health-related quality of life of functional electrical stimulation used to improve walking in people with multiple sclerosis and to explore cost-effectiveness. DESIGN: A retrospective analysis of patient records was conducted. SETTING: This study used outpatient therapy service as the study setting. SUBJECTS: Data from 82 consecutive patients with multiple sclerosis attending for set up with functional electrical stimulation were analysed. INTERVENTIONS: Patients were seen at baseline, three and six months for support in use of functional electrical stimulation, and data were collected at baseline and six months. MAIN MEASURES: The EQ-5D-5L and walking speed were collected at baseline and six months after using functional electrical stimulation. The Psychosocial Impact of Assistive Device Scale was collected at six months. EQ-5D-3L utilities were derived and cost-effectiveness analysis was completed utilizing a five-year time horizon and methodology published by National Institute for Health and Care Excellence. RESULTS: Significant differences (P < 0.001) were seen in walking speed (baseline 0.670 m/s; with stimulation 0.768 m/s) and maintained over six months (0.772 m/s with stimulation). EQ-5D data significantly improved over six months (baseline 0.486, six months 0.596, P < 0.001) and meaningful mean scores were seen in all aspects of the Psychosocial Impact of Assistive Device Scale. However, there were no correlations between measures. In the cost utility analysis, compared to standard care, functional electrical stimulation was more expensive and more effective with an incremental cost-effectiveness ratio of £6137. CONCLUSION: Functional electrical stimulation is a cost-effective treatment to improve walking speed and health-related quality of life in people with multiple sclerosis.

Comparison of seating, powered characteristics and functions and costs of electrically powered wheelchairs in a general population of users.

PURPOSE: To profile and compare the seating and powered characteristics and functions of electrically powered wheelchairs (EPWs) in a general user population including equipment costs. METHOD: Case notes of adult EPW users of a regional NHS service were reviewed retrospectively. Seating equipment complexity and type were categorized using the Edinburgh classification. Powered characteristics and functions, including control device type, were recorded. RESULTS: 482 cases were included; 53.9% female; mean duration EPW use 8.1 years (SD 7.4); rear wheel drive 88.0%; hand joystick 94.8%. Seating complexity: low 73.2%, medium 18.0%, high 8.7%. Most prevalent diagnoses: multiple sclerosis (MS) 25.3%, cerebral palsy (CP) 18.7%, muscular dystrophy (8.5%). Compared to CP users, MS users were significantly older at first use, less experienced, more likely to have mid-wheel drive and less complex seating. Additional costs for muscular dystrophy and spinal cord injury users were 3-4 times stroke users. CONCLUSIONS: This is the first large study of a general EPW user population using a seating classification. Significant differences were found between diagnostic groups; nevertheless, there was also high diversity within each group. The differences in provision and the equipment costs across diagnostic groups can be used to improve service planning. Implications for Rehabilitation At a service planning level, knowledge of a population's diagnostic group and age distribution can be used to inform decisions about the number of required EPWs and equipment costs. At a user level, purchasing decisions about powered characteristics and functions of EPWs and specialised seating equipment need to be taken on a case by case basis because of the diversity of users' needs within diagnostic groups. The additional equipment costs for SCI and MD users are several times those of stroke users and add between 60 and 70% of the cost of basic provision.

The Multiple Sclerosis Care Unit.

Treatment of multiple sclerosis (MS) has become increasingly multifaceted and comprises not only a variety of disease-modifying drugs with different mechanism of action but also a wide range of symptomatic therapies. Today, it is not possible for the family physician or even many general neurologists to master the current treatment algorithm, and this calls for the establishment of multidisciplinary MS Care Units. The core of the MS Care Unit would, in addition to MS neurologists and nurses, typically comprise neuropsychologists, clinical psychologists, physiotherapists, occupational therapists and secretaries, and will work together with a group of different specialists on formalized diagnostic workup procedures, protocols for initiation and follow-up of disease-modifying therapies. It is obvious that the terms of performance of different MS Care Units will vary across regions and need to be balanced with clinical practice according to local conditions. Although the main objective for establishment of MS Care Units will be to offer the single MS patient seamless and correct management of the disease to increase patient satisfaction and quality of life, it may even be cost-effective for the society by maintaining the working ability and reducing the costs of home help and custodial care by keeping people with MS resourceful.

Patient and caregiver involvement in the formulation of guideline questions: findings from the European Academy of Neurology guideline on palliative care of people with severe multiple sclerosis.

BACKGROUND AND PURPOSE: Patient and public involvement in clinical practice guideline development is recommended to increase guideline trustworthiness and relevance. The aim was to engage multiple sclerosis (MS) patients and caregivers in the definition of the key questions to be answered in the European Academy of Neurology guideline on palliative care of people with severe MS. METHODS: A mixed methods approach was used: an international online survey launched by the national MS societies of eight countries, after pilot testing/debriefing on 20 MS patients and 18 caregivers, focus group meetings of Italian and German MS patients and caregivers. RESULTS: Of 1199 participants, 951 (79%) completed the whole online survey and 934 from seven countries were analysed: 751 (80%) were MS patients (74% women, mean age 46.1) and 183 (20%) were caregivers (36% spouses/partners, 72% women, mean age 47.4). Participants agreed/strongly agreed on inclusion of the nine pre-specified topics (from 89% for 'advance care planning' to 98% for 'multidisciplinary rehabilitation'), and <5% replied 'I prefer not to answer' to any topic. There were 569 free comments: 182 (32%) on the pre-specified topics, 227 (40%) on additional topics (16 guideline-pertinent) and 160 (28%) on outcomes. Five focus group meetings (three of MS patients, two of caregivers, and overall 35 participants) corroborated the survey findings. In addition, they allowed an explanation of the guideline production process and the exploration of patient-important outcomes and of taxing issues. CONCLUSIONS: Multiple sclerosis patient and caregiver involvement was resource and time intensive, but rewarding. It was the key for the formulation of the 10 guideline questions and for the identification of patient-important outcomes.

Results of a feasibility study of a patient informed, racially tailored home-based exercise program for black persons with multiple sclerosis.

BACKGROUND: Exercise training is a promising approach for managing multiple sclerosis (MS), but existing research has not focused on black individuals with MS. This is important as black individuals with MS may experience a more aggressive disease course, increased comorbidities, and have a poorer prognosis with disease modifying therapies. MATERIALS AND METHODS: Thirty-two black adults with mild-to-moderate MS related disability participated in a patient-informed, three-month, home-based, racially tailored, exercise program. The exercise program, Project GEMS, was modified for black persons with MS through patient feedback. The feasibility of the modified exercise program was measured through the four domains of process (e.g., recruitment and retention), resources (e.g., communication and monetary costs), management (e.g., of data management and safety reporting), and scientific outcomes (e.g., safety, burden, adherence, experience, and treatment effect). RESULTS: This exercise program was feasible, safe, and well received based on data analysis and formative evaluation. Twenty-four participants completed post-assessment (75%; two dropped out, six did not return follow-up assessments). The exercise program cost a total of $3726.57 (personnel costs = $2128.74 USD, $20.87 USD per/h; exercise program costs = $1597.83 USD, mean cost per person = $46.93). Participants were adherent with 70% of the 48 exercise sessions via self-reported exercise logs. There was a significant and large increase (t = -5.1, p < .001, d = -1.0) in exercise behavior as measured by the Godin Leisure-Time Exercise Questionnaire. CONCLUSION: The results support the feasibility, acceptability, safety, and efficacy of this intervention for increasing exercise behavior among black adults with mild-to-moderate MS.

Quality of life assessment among multiple sclerosis patients in Saudi Arabia.

OBJECTIVE: To determine the quality of life (QoL) among multiple sclerosis (MS) patients in Kingdom of Saudi Arabia. METHODS: A cross-sectional study was carried out to assess the QoL of MS patients during the period from November 2016 to May 2017. Patients were recruited from tertiary hospitals in 5 regions in the kingdom. Clinical and demographic data were collected and information on patients` health status using the self-report SF-36 questionnaire to assess QoL. The Patient Determined Disease Steps (PDDS) was used to measure disability. Data were analyzed using descriptive statistics, the Mann-Whitney test, the Kruskal Wallis test and Spearman`s coefficient correlation. RESULTS: From the 598 MS patients studied, 384 (64.2%) were female. The mean score for males was higher than females in all SF-36 QoL subscales. The mean age was 32.4 years (SD=8.4). The mean duration of illness was 6.5 years. Patients had the lowest scores in role motioning/emotional scale (mean=42.6, SD=43.3). The PDDS was negatively correlated with all SF-36 QoL subscales. Self Report-36 QoL for MS patients differed significantly through demographic characteristics at a level of significance of 0.05. CONCLUSION: Multiple Sclerosis patients have a low QoL score and need more comprehensive management by their treating physicians. Further development of the registration will provide access to the entire population of MS patients and help comprehensively analyze the factors that affect the quality of their lives.

Quantitative assessment of the effects of 6 months of adapted physical activity on gait in people with multiple sclerosis: a randomized controlled trial.

PURPOSE: The purpose of this study is to quantitatively assess the effect of 6 months of supervised adapted physical activity (APA i.e. physical activity designed for people with special needs) on spatio-temporal and kinematic parameters of gait in persons with Multiple Sclerosis (pwMS). METHODS: Twenty-two pwMS with Expanded Disability Status Scale scores ranging from 1.5 to 5.5 were randomly assigned either to the intervention group (APA, n = 11) or the control group (CG, n = 11). The former underwent 6 months of APA consisting of 3 weekly 60-min sessions of aerobic and strength training, while CG participants were engaged in no structured PA program. Gait patterns were analyzed before and after the training using three-dimensional gait analysis by calculating spatio-temporal parameters and concise indexes of gait kinematics (Gait Profile Score - GPS and Gait Variable Score - GVS) as well as dynamic Range of Motion (ROM) of hip, knee, and ankle joints. RESULTS: The training originated significant improvements in stride length, gait speed and cadence in the APA group, while GPS and GVS scores remained practically unchanged. A trend of improvement was also observed as regard the dynamic ROM of hip, knee, and ankle joints. No significant changes were observed in the CG for any of the parameters considered. CONCLUSIONS: The quantitative analysis of gait supplied mixed evidence about the actual impact of 6 months of APA on pwMS. Although some improvements have been observed, the substantial constancy of kinematic patterns of gait suggests that the full transferability of the administered training on the ambulation function may require more specific exercises. Implications for rehabilitation Adapted Physical Activity (APA) is effective in improving spatio-temporal parameters of gait, but not kinematics, in people with multiple sclerosis. Dynamic range of motion during gait is increased after APA. The full transferability of APA on the ambulation function may require specific exercises rather than generic lower limbs strength/flexibility training.

Changing physical activity behaviour for people with multiple sclerosis: protocol of a randomised controlled feasibility trial (iStep-MS).

INTRODUCTION: Although physical activity may reduce disease burden, fatigue and disability, and improve quality of life among people with multiple sclerosis (MS), many people with MS are physically inactive and spend significant time in sedentary behaviour. Behaviour change interventions may assist people with MS to increase physical activity and reduce sedentary behaviour. However, few studies have investigated their effectiveness using objective measures of physical activity, particularly in the long term. Further, interventions that have proven effective in the short term may not be feasible in clinical practice because of the large amount of support provided. The iStep-MS trial aims to determine the safety, feasibility and acceptability of a behaviour change intervention to increase physical activity and reduce sedentary behaviour among people with MS. METHODS AND ANALYSIS: Sixty people with MS will be randomised (1:1 ratio) to receive a 12-week intervention or usual care only. The intervention consists of four physical activity consultations with a physiotherapist supported by a handbook and pedometer. Outcomes assessed at baseline, 12 weeks and 9 months are physical activity (ActiGraph wGT3X-BT accelerometer), sedentary behaviour (activPAL3µ), self-reported activity and sitting time, walking capability, fatigue, self-efficacy, participation, quality of life and health service use. The safety of the intervention will be determined by assessing change in pain and fatigue and the incidence of adverse events during the follow-up period. A parallel process evaluation will assess the feasibility and acceptability of the intervention through assessment of fidelity to the programme and semistructured interviews exploring participants' and therapists' experiences of the intervention. The feasibility of conducting an economic evaluation will be determined by collecting data on quality of life and resource use. ETHICS AND DISSEMINATION: Research ethics committee approval has been granted from Brunel University London. Results of the trial will be submitted for publication in journals and distributed to people with MS and physiotherapists. TRIAL REGISTRATION NUMBER: ISRCTN15343862 (doi 10.1186/ISRCTN15343862). Protocol version: 1.0; Pre-results.