The meanings people with multiple sclerosis ascribe to exercise and physical activity extended beyond movement, reflecting how they lived with a variable neurological condition. Personal and contextual factors were dominant influences. Implications for Rehabilitation Health professionals should consider the impact personal and contextual factors have on influencing decisions around exercise and physical activity in community dwelling people with multiple sclerosis. Understanding the multidimensional and complex views people with multiple sclerosis ascribe to exercise and physical activity might help health professionals in their discussions around exercise and physical activity and create opportunities to increase physical activity levels in people with multiple sclerosis. Health professionals should recognise that people with multiple sclerosis not only engage in exercise and physical activity to manage MS symptoms, but also as a way to connect with others and cope with the variability of the condition.
Aims: Exercise and physical activity have been found to be beneficial in managing disabilities caused by multiple sclerosis. Despite the known benefits, many people with multiple sclerosis are inactive. This study aimed to identify the prioritised exercise and physical activity practices of people with multiple sclerosis living in the community and the reasons why they are engaged in these activities. Methods: A four Round Delphi questionnaire scoped and determined consensus of priorities for the top 10 exercise and physical activities and the reasons why people with multiple sclerosis (n ¼ 101) are engaged in these activities. Data were analysed using content analysis, descriptive statistics, and nonparametric tests. Results: The top 10 exercise and physical activity practices and the top 10 reasons why people with multiple sclerosis (n ¼ 70) engaged in these activities were identified and prioritised. Consensus was achieved for the exercise and physical activities (W ¼ 0.744, p < .0001) and for the reasons they engaged in exercise and physical activity (W ¼ 0.723, p < .0001). Conclusion:The exercise and physical activity practices and the reasons people with multiple sclerosis engaged in exercise and physical activity were diverse. These self-selected activities and reasons highlighted that people with multiple sclerosis might conceptualise exercise and physical activity in ways that may not be fully appreciated or understood by health professionals. Considerations of the views of people with multiple sclerosis may be essential if the goal of increasing physical activity in this population is to be achieved. ä IMPLICATIONS FOR REHABILITATIONHealth professionals should work collaboratively with people with multiple sclerosis to understand how they prioritise activities, the underlying reasons for their prioritisations and embed these into rehabilitation programmes. Health professionals should utilise activities prioritised by people with multiple sclerosis in the community as a way to support, promote, and sustain exercise and physical activity in this population. Rehabilitation interventions should include both the activities people with multiple sclerosis prioritise and the reasons why they engage in exercise and physical activity as another option for increasing physical activity levels and reducing sedentary behaviours. ARTICLE HISTORY
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Background: There is limited information regarding the safety, feasibility and acceptability of behaviour-change interventions to increase physical activity (PA) and reduce sedentary behaviour among people with multiple sclerosis (MS). Prior to evaluating efficacy, it is important to identify problems with feasibility and acceptability, which may undermine effectiveness. Objective: To examine the safety, feasibility and acceptability of a behaviour-change intervention to increase PA and reduce sedentary behaviour among people with MS. Methods: Sixty people received a 3-month intervention or usual care. Fatigue, pain and adverse events (AEs) were assessed. Feasibility and acceptability were explored through focus groups with physiotherapists and interviews with participants. Fidelity to intervention content, delivery skills, programme receipt and programme task were assessed. Results: There was no difference in AE rate between groups ( p = 0.965). Fatigue and pain were not higher in the intervention group at 3 or 9 months. Therapists reported the intervention was feasible to deliver and fidelity was acceptable. Twenty-nine participants (97%) attended at least 75% of sessions. Participants found the intervention acceptable but suggested some amendments were required to intervention components. Conclusions: The intervention was safe, feasible and acceptable. Although modifications are required to intervention components, the intervention warrants further evaluation in a future trial.
Objective: To report on safety and effectiveness of subcutaneous cladribine (Litak®) in multiple sclerosis (MS) patients. Methods: Litak® was offered to MS-patients irrespective of disease course. Litak® 10 mg was administered for 3–4 days during week 1. Based on lymphocyte count at week 4, patients received another 0–3 doses at week 5. A second course was administered 11 months later. Follow-up included adverse events, relapses, expanded disability status scale (EDSS), 9-hole-peg and Timed-25-foot-walking tests, no-evidence-of-disease-activity (NEDA), no-evidence-of-progression-or-active-disease (NEPAD), MRI, cerebrospinal fluid (CSF) neurofilament light chain (NfL), and lymphocyte counts. Results: In all, 208 patients received at least one course of treatment. Age at baseline was 44 (17–72) years and EDSS 0–8.5. Cladribine was generally well tolerated. One myocardial infarction, one breast cancer, and three severe skin reactions occurred without long-term sequelae. Two patients died (one pneumonia, one encephalitis). Lymphopenia grade 3 occurred in 5% and grade 4 in 0.5%. In 94 out of 116 pwMS with baseline and follow-up (BaFU) data after two treatment courses, EDSS remained stable or improved. At 18 months, 64% of patients with relapsing MS and BaFU data ( n = 39) had NEDA. At 19 months, 62% of patients with progressive MS and BaFU data ( n = 13) had NEPAD. Of n = 13 patients whose CSF-NfL at baseline was elevated, 77% were normalised within 12 months. Conclusions: Litak® was well tolerated. Effectiveness in relapsing MS appeared similar to cladribine tablets and was encouraging in progressive MS. Our data suggest cladribine may be safe and effective in MS-patients irrespective of their disease stage.
Technological innovation is transforming traditional clinical practice, enabling people with multiple sclerosis (pwMS) to contribute health care outcome data remotely between clinic visits. In both relapsing and progressive forms of multiple sclerosis (MS), patients may experience variable disability accrual and symptoms throughout their disease course. The potential impact on the quality of life (QoL) in pwMS and their families and carers is profound. The introduction of treatment targets, such as NEDA (no evidence of disease activity) and NEPAD (no evidence of progression or active disease), that guide clinical decision-making, highlight the importance of utilizing sensitive instruments to measure and track disease activity and progression. However, the gold standard neurological disability tool-expanded disability severity scale (EDSS)-has universally recognized limitations. With strides made in our understanding of MS pathophysiology and DMT responsiveness, maintaining the status quo of measuring disability progression is no longer the recommended option. Outside the clinical trial setting, a comprehensive monitoring system has not been robustly established for pwMS. A 21st-century approach is required to integrate clinical, paraclinical, and patient-reported outcome (PRO) data from electronic health records, local databases, and patient registries. Patient and public involvement (PPI) is critical in the design and implementation of this workflow. To take full advantage of the potential of digital technology in the monitoring and care and QoL of pwMS will require iterative feedback between pwMS, health care professionals (HCPs), scientists, and digital experts.
Purpose: Self-monitoring may represent a mechanism to enhance physical activity among people with multiple sclerosis. To optimise activity monitoring as a behavioural tool to increase physical activity, user experience must be understood. This study evaluated user experience of the Yamax SW-200 Digi-walker pedometer in a group of people with MS.Methods: Semi-structured interviews were conducted with 15 adults who participated in a 12-week pedometer-supported behavioural change intervention, the iStep-MS trial. Interviews were audiorecorded and transcribed verbatim. Data were analysed using the Framework Method.Results: An overarching theme Pedometers, the frustrating motivators captures the complex and often contradictory experience of the pedometer. Sub-themes include: Increasing activity awareness, which describes the pedometer's utility in raising activity consciousness; Numeric motivation provides insight into dual motivating and demotivating experiences of using an objective feedback device; (Un) usability focuses on practical concerns encountered in the day-to-day use of the monitor. Conclusion:The Yamax SW-200 Digi-walker raised awareness and enhanced participant motivation to engage in physical activity. Accuracy and usability concerns highlighted warrant consideration in the selection of this pedometer within a population with multiple sclerosis.
Purpose: This study explored physiotherapists' interpretation of exercise and physical activity, examined physiotherapists' views and opinions about the prioritised physical activity practices of people with multiple sclerosis and its implication for clinical practice. Method: Fourteen physiotherapists (12 females, 2 males) with experience of working with people with multiple sclerosis in the community participated in three focus groups. Physiotherapists commented on the results of a previous Delphi study which highlighted the prioritised exercise and physical activity practices and reasons people with multiple sclerosis engage in exercise and physical activity. The focus groups were audio recorded and transcribed verbatim. Data were analysed using framework analysis. Results: Four themes were developed from the analysis namely, Blurred terminologies, Influencing factors for the meaning of exercise and physical activity, When professional expertise meets experiential expertise and The resolve: resolving professional and experiential tensions. Conclusion: Physiotherapists described exercise and physical activity as movement with a focus on the physiological attributes. Nonetheless they valued and use exercise and physical activity as strategies to manage the symptoms associated with multiple sclerosis. Physiotherapists are strategically placed in the community to initiate discussions, assess, and create opportunities to enhance the physical activity practices of people with multiple sclerosis. However, there is greater scope for the application of physical activity to be embedded in routine clinical practice in the management of multiple sclerosis in the community. ä IMPLICATIONS FOR REHABILITATION Physiotherapists should design flexible physical activity programmes which are meaningful, engaging and foster the necessary environment to sustain physical activity participation in people with multiple sclerosis. Health professionals should be aware of and understand the individuals' priorities as these are key drivers to engaging and sustaining physical activity in community dwelling people with multiple sclerosis. Physiotherapists should be aware of their own beliefs and theoretical principles that guide designs and treatment programmes as these might either enhance or restrict physical activity in people with multiple sclerosis.
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