Engaging a community to focus on upper limb function in people with multiple sclerosis: the ThinkHand campaign case study.

BACKGROUND: Solving complex research challenges requires innovative thinking and alternative approaches to traditional methods. One such example is the problem of arm and hand, or upper limb function in multiple sclerosis (MS), a neurological condition affecting approximately 2.9 million people worldwide and more than 150,000 in the United Kingdom. Historically, clinical trials and research have focused on mobility and walking ability. This excludes a large number of patients who are wheelchair users, limiting their quality of life and restricting access to possibly helpful medications. To address this issue, the ThinkHand campaign was launched in 2016, aiming to raise awareness about the importance of upper limb function in MS and develop alternative ways to measure, record, and account for hand and arm function changes. MAIN BODY: The campaign utilised innovative strategies at scientific conferences and online surveys to engage people affected by MS, healthcare professionals, charities, and researchers in discussing the importance of preserving upper limb function. Through co-design and interdisciplinary collaboration, the campaign developed new tools like the low-cost cardboard version of the Nine-Hole Peg Test, facilitating remote monitoring of hand function. Additionally, the campaign co-created the "Under & Over" rehabilitation tool, allowing individuals with advanced MS to participate in a remote rehabilitation program.The impact of the ThinkHand campaign has been significant, helping to shift the focus of both academic and industry-supported trials, including the O'HAND and ChariotMS trials, both using upper limb function as their primary end point. The campaign's patient-centred approach highlighted the importance of recognising patients' perspectives in research and challenged established assumptions and practices. It demonstrated the effectiveness of interdisciplinary collaboration, systems thinking, and co-creation with stakeholders in tackling complex problems. CONCLUSION: The ThinkHand campaign provides valuable insights for health research practices. By involving patients at all stages, researchers can gain a deeper understanding of the impact of disease on their lives, identify gaps and focus research on their needs. Experimentation and iteration can lead to innovative solutions, and openness to unconventional methods can drive widespread change. The ThinkHand campaign exemplifies the potential of patient-centred approaches to address complex research challenges and revolutionise the field of MS research and management. Embracing such approaches will contribute to more inclusive and impactful research in the future.

Solving complex research challenges requires creative thinking and new ways of doing things. One such challenge is understanding the problems with arm and hand function in multiple sclerosis (MS), a neurological condition that affects more than 150,000 in the United Kingdom. In the past, research focused mainly on walking ability, leaving out many people who use wheelchairs.To tackle this issue, we created the ThinkHand campaign in 2016. Its goal was to raise awareness about the importance of hand and arm function for people with MS (pwMS) and find better ways to measure changes in these functions such that they can become outcomes in clinical trials. This could provide a pathway to better treatments for pwMS who cannot walk.The campaign used various methods, including surveys, social media posts, exhibitions and music to involve pwMS, healthcare professionals, charities, and researchers in discussions about the issues. Working together, they created tools to support pwMS, particularly those at an advanced stage of the disease (pwAMS), to take part in research and measure their hand and arm function. Through our collaborative approach focusing on patients' perspectives, the campaign challenged old ideas and deeply embedded practices. It showed that collaboration between different areas of expertise involving pwMS at all stages of research can help solve complex problems. This campaign teaches us valuable lessons for health research. When researchers listen to patients and try new things, they can better understand how a disease affects people's lives and develop better solutions.In conclusion, we show how embracing a patient-centred approach can address complex research challenges and improve how we study and manage MS and other conditions in the future.

Under & Over: A randomised controlled study to develop an upper limb rehabilitation tool for people with Multiple Sclerosis.

BACKGROUND: Impairment of upper limb function is common in Multiple Sclerosis (MS). Rehabilitation remains a key strategy to manage symptoms and improve quality of life. The Under & Over study assessed the effectiveness of a rehabilitation programme in people with advanced MS. OBJECTIVE: To determine if repeated use of Under & Over can improve upper limb function for people with MS. METHODS: One hundred and six (N = 106) people with MS participated in this 3-month study. The primary outcome measure was the cardboard 9-hole peg test (c9HPT), with secondary outcomes including the EuroQol-5Dimensions, 5-Level Questionnaire (EQ5D-5 L) questionnaire. There were three arms: Arm 1a, the 'Daily Group', engaged with the Under & Over tool daily for 30 min. Arm 1b, the 'Free Use Group', used the same tool without time constraints, with the added feature of a community sharing platform. Arm 2, the 'Delayed Start Group', initially completed the c9HPT for three months before switching to the 'Free Use' programme. RESULTS: 43/106 (41 %) of those randomised completed the primary end point. No significant difference between c9HPT at baseline and 3 months was seen in Arm 1a or 1b. Participants in Arm 2 who had been completing the c9HPT 5 days a week for 3 months showed a training effect in the dominant hand (mean speed at baseline 0.0455 (s-1), mean at 3 months 0.0341, difference 0.011; 95 % CI 0.0080 to 0.0148, p < 0.001). No significant difference was seen in c9HPT time following 3 months of active use of the Under & Over tool. The study faced significant limitations, notably in participant adherence, with fewer than half (43/106 (41 %)) completing the final assessment. CONCLUSIONS: This study demonstrates how a small, engaged, and motivated group were able to complete a remote rehabilitation programme. Future remote intervention studies could benefit from incorporating adaptive engagement strategies, such as personalised reminders and participant-tailored activity adjustments, to enhance adherence and capture a broader spectrum of patient experiences.

Parakinesia Brachialis Oscitans in a Patient With a First Manifestation of Multiple Sclerosis.

Objectives: Parakinesia brachialis oscitans (PBO) is the involuntary movement of an otherwise paretic upper limb triggered by yawning. We describe the first case of PBO in a patient with a first manifestation of tumefactive multiple sclerosis (MS). Methods: A 35-year-old man presented to the emergency department with a first episode of generalized seizure. Neurologic examination revealed left-sided spastic hemiparesis, predominantly affecting his upper limb. Brain MRI showed a tumefactive right hemisphere lesion consistent with demyelination. CSF did not document unmatched oligoclonal bands. Results: Two weeks after admission and, despite being unable to voluntarily raise his left arm, the patient noticed a repeated and reproducible involuntary raise of this limb upon yawning, consistent with PBO. In the following weeks, the phenomenon diminished both in frequency and movement amplitude alongside motor recovery. An MRI performed 2 months later showed progression of the demyelinating lesion load and confirmed a diagnosis of MS. Discussion: PBO is an example of autonomic voluntary motor dissociation and reflects the interplay between loss of cortical inhibition of the cerebellum in the setting of functional spinocerebellar pathways. Clinicians should be aware of this transient phenomenon which should not be mistaken as a chronic movement disorder or focal epileptic seizures.

MS care: integrating advanced therapies and holistic management.

Lifestyle and environmental factors are key determinants in disease causality and progression in neurological conditions, including multiple sclerosis (MS). Lack of exercise, poor diet, tobacco smoking, excessive alcohol intake, social determinants of health, concomitant medications, poor sleep and comorbidities can exacerbate MS pathological processes by impacting brain health and depleting neurological reserves, resulting in more rapid disease worsening. In addition to using disease-modifying therapies to alter the disease course, therapeutic strategies in MS should aim to preserve as much neurological reserve as possible by promoting the adoption of a "brain-healthy" and "metabolically-healthy" lifestyle. Here, we recommend self-regulated lifestyle modifications that have the potential to improve brain health, directly impact on disease progression and improve outcomes in people with MS. We emphasise the importance of self-management and adopting a multidisciplinary, collaborative and person-centred approach to care that encompasses the healthcare team, family members and community support groups.

Neuropsychological evaluation and rehabilitation in multiple sclerosis (NEuRoMS): protocol for a mixed-methods, multicentre feasibility randomised controlled trial.

BACKGROUND: Cognitive problems affect up to 70% of people with multiple sclerosis (MS), which can negatively impact mood, ability to work, and quality of life. Addressing cognitive problems is a top 10 research priority for people with MS. Our ongoing research has systematically developed a cognitive screening and management pathway (NEuRoMS) tailored for people with MS, involving a brief cognitive evaluation and rehabilitation intervention. The present study aims to assess the feasibility of delivering the pathway and will inform the design of a definitive randomised controlled trial (RCT) to investigate the clinical and cost-effectiveness of the intervention and eventually guide its clinical implementation. METHODS: The feasibility study is in three parts. Part 1 involves an observational study of those who receive screening and support for cognitive problems, using routinely collected clinical data. Part 2 is a two-arm, parallel group, multicentre, feasibility RCT with a nested fidelity evaluation. This part will evaluate the feasibility of undertaking a definitive trial comparing the NEuRoMS intervention plus usual care to usual care only, amongst people with MS with mild cognitive problems (n = 60). In part 3, semi-structured interviews will be undertaken with participants from part 2 (n = 25), clinicians (n = 9), and intervention providers (n = 3) involved in delivering the NEuRoMS cognitive screening and management pathway. MS participants will be recruited from outpatient clinics at three UK National Health Service hospitals. DISCUSSION: Timely screening and effective management of cognitive problems in MS are urgently needed due to the detrimental consequences of cognitive problems on people with MS, the healthcare system, and wider society. The NEuRoMS intervention is based on previous and extant literature and has been co-constructed with relevant stakeholders. If effective, the NEuRoMS pathway will facilitate timely identification and management of cognitive problems in people with MS. TRIAL REGISTRATION: ISRCTN11203922 . Prospectively registered on 09.02.2021.

Pedometers, the frustrating motivators: a qualitative investigation of users' experiences of the Yamax SW-200 among people with multiple sclerosis.

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 audio-recorded 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. TRIAL REGISTRATION: Changing physical activity behaviour in people with MS: the iStep-MS trial; ISRCTN15343862; https://doi.org/10.1186/ISRCTN15343862Implications for rehabilitationUse of self-monitoring tools such as pedometers can enhance physical activity awareness.Objective, numeric step count feedback is an effective motivational tool for physical activity.Accuracy and usability concerns may limit the value of the Yamax SW-200 Digiwalker for people with MS.Identification of individualised, reliable, usable and acceptable tools is important to ensure engagement with self-monitoring.

Patterns and correlates of sedentary behaviour among people with multiple sclerosis: a cross-sectional study.

High levels of sedentary behaviour are associated with poor health outcomes in people with multiple sclerosis (MS). Identifying modifiable correlates of sedentary behaviour for people with MS is essential to design effective intervention strategies to minimise sedentary time. This study aimed to quantify patterns and identify correlates of sedentary behaviour among adults with MS. Fatigue, self-efficacy, walking capability, the physical and psychological impact of MS, health-related quality of life, and participation and autonomy were assessed by questionnaire. Participants wore an activPAL monitor. Total (min/day), prolonged bouts (≥ 30 min) and breaks in sedentary time were calculated. Associations were examined using regression analysis adjusted for demographic and clinical confounders. Fifty-six adults with MS participated (mean ± SD age: 57.0 ± 9.25 years; 66% female). Self-efficacy for control over MS was associated with sedentary time (ß = 0.16, 95% CI 0.01, 0.30). Self-efficacy in function maintenance (ß = 0.02, 95% CI 0.00, 0.04), health-related quality of life (EuroQol-5D) (ß = 31.60, 95% CI 7.25, 55.96), and the autonomy indoors subscale of the Impact on Participation and Autonomy Questionnaire (ß = - 5.11, 95% CI - 9.74, - 0.485) were associated with breaks in sedentary time. Future studies should consider self-efficacy, health-related quality of life and participation and autonomy as potential components of interventions to reduce sedentary behaviour.

Evaluation of remote assessments for multiple sclerosis in an in-home setting.

BACKGROUND: There is an urgent clinical need for reliable remote monitoring methods in Multiple Sclerosis (MS). We evaluated the use of remotely patient-recorded timed 25-foot walk (rT25FW) and nine-hole peg test (r9HPT). METHODS: Seventy-one people with MS completed a previously-validated online EDSS (webEDSS) and r9HPT, and 108 completed the webEDSS and rT25FW. RESULTS: There was a mild-moderate positive correlation between webEDSS and rT25FW, and no significant correlation between webEDSS and r9HPT. Distributions of rT25FW and r9HPT times were positively skewed. CONCLUSIONS: Our results provide pilot evidence that remote monitoring of MS is potentially valid but requires refinement before wide-scale implementation. With a median EDSS of 4.5 and EDSS range of 0 - 8.0, at least some patients with ambulatory difficulty are able to complete the assessments.

Characterizing nicotine exposure among a community sample of non-daily smokers in the United States.

BACKGROUND: Over one-quarter of all smokers in the United States identify as non-daily smokers and this number is projected to rise. Unlike daily smokers who typically maintain consistent levels of nicotine exposure with regular smoking, non-daily smokers have variable patterns of smoking that likely result in high intraindividual variability in nicotine intake. The current study aimed to characterize the weekly intraindividual variability in cotinine and identify smoking-related predictors in nondaily smokers. METHODS: An ecological momentary assessment of 60 non-daily smokers ages 24-57 years was conducted over a consecutive 7-day at-home protocol to log each smoking session, assessments of mood and social activity during smoking, and collection of daily saliva samples in a convenience sample from Pennsylvania, USA. Hierarchical linear regression analyses were conducted to determine the effects of smoking characteristics on total cotinine exposure measured by pharmacokinetic area under the curve and the range, maximum, and minimum cotinine values during the week controlling for demographic variables. RESULTS: The mean daily cotinine level was 119.2 ng/ml (SD = 168.9) with individual values that ranged from nondetectable to 949.6 ng/ml. Menthol predicted increased total cotinine levels (P < 0.05). Shorter time to the first cigarette of the day predicted significantly higher minimum (P < 0.05), maximum (P < 0.05), and total cotinine values (P < 0.05) after controlling for covariates. Negative emotions and social interactions with others were also significantly associated with higher cotinine metrics. There was no significant effect of the nicotine metabolite ratio. CONCLUSIONS: Our findings highlight the variability in nicotine exposure across days among non-daily smokers and point to the role of smoking context in nicotine exposure. The findings suggest the need to develop better assessment methods to determine health and dependence risk and personalized cessation interventions for this heterogeneous and growing group of smokers.

Validity and Acceptability of Wearable Devices for Monitoring Step-Count and Activity Minutes Among People With Multiple Sclerosis.

Multiple wearable devices that purport to measure physical activity are widely available to consumers. While they may support increases in physical activity among people with multiple sclerosis (MS) by providing feedback on their performance, there is little information about the validity and acceptability of these devices. Providing devices that are perceived as inaccurate and difficult to use may have negative consequences for people with MS, rather than supporting participation in physical activity. The aim of this study was, therefore, to assess the validity and acceptability of commercially available devices for monitoring step-count and activity time among people with MS. Nineteen ambulatory adults with MS [mean (SD) age 52.1 (11.9) years] participated in the study. Step-count was assessed using five commercially available devices (Fitbit Alta, Fitbit Zip, Garmin Vivofit 4, Yamax Digi Walker SW200, and Letscom monitor) and an activPAL3µ while completing nine everyday activities. Step-count was also manually counted. Time in light activity, moderate-to-vigorous activity, and total activity were measured during activities using an Actigraph GT3X accelerometer. Of the 19 participants who completed the validity study, fifteen of these people also wore the five commercially available devices for three consecutive days each, and participated in a semi-structured interview regarding their perception of the acceptability of the monitors. Mean percentage error for step-count ranged from 12.1% for the Yamax SW200 to -112.3% for the Letscom. Mean step-count as manually determined differed to mean step-count measured by the Fitbit Alta (p = 0.002), Garmin vivofit 4 (p < 0.001), Letscom (p < 0.001) and the research standard device, the activPAL3µ (p < 0.001). However, 95% limits of agreement were smallest for the activPAL3µ and largest for the Fitbit Alta. Median percentage error for activity minutes was 52.9% for the Letscom and 100% for the Garmin Vivofit 4 and Fitbit Alta compared to minutes in total activity. Three inductive themes were generated from participant accounts: Interaction with device; The way the device looks and feels; Functionality. In conclusion, commercially available devices demonstrated poor criterion validity when measuring step-count and activity time in people with MS. This negatively affected the acceptability of devices, with perceived inaccuracies causing distrust and frustration. Additional considerations when designing devices for people with MS include an appropriately sized and lit display and ease of attaching and charging devices.

Correlates of Objectively Measured Physical Activity Among People With Multiple Sclerosis: A Cross-Sectional Study.

Background: Identifying correlates of physical activity (PA) for people with multiple sclerosis (MS) is essential to design effective PA interventions. Methods: Participants completed a battery of questionnaires and wore an ActiGraph accelerometer. Light physical activity (LPA) and moderate-to-vigorous physical activity (MVPA) (min/day) were calculated. Associations were examined using multiple linear regression adjusted for demographic and clinical confounders. Results: Fifty-eight adults with MS participated (mean ± SD age: 56.8 ± 9.2 yr; 67% women). MS type was associated with time in LPA. Participants with secondary progressive MS (B = -54.0, 95% CI -84.7 to -23.3) and primary progressive MS (B = -42.9, 95% CI -77.5 to -8.3) spent less time in LPA than those with relapsing remitting MS. Walking capacity, assessed using the 12-item MS walking scale (MSWS-12), was associated with time in MVPA (B = -0.36, 95% CI -0.72 to -0.01). Conclusion: This work identifies walking capacity and type of MS as correlates of PA, which may indicate development of interventions to promote PA.

Flipping the ICF: Exploring the Interplay of Theory and the Lived Experience to Reconsider Physical Activity in Community-Dwelling People With Multiple Sclerosis.

People with multiple sclerosis (MS) report lower physical activity levels and are at a risk of becoming sedentary. As such, they are at an increased risk of developing secondary health conditions associated with inactivity. This is of major public health concern. Attempts to improve the physical activity levels in people with MS remain a challenge for health professionals. One key reason might be the lack of understanding about the meanings people with MS ascribe to exercise and physical activity. This paper draws on the key findings of a three-phased interconnected mixed methods sequential explanatory study to examine the meanings of exercise and physical activity from the perspectives of people with MS and health professionals. Phase 1 used a four-round Delphi questionnaire to scope and determine the consensus of priorities for exercise and physical activity and the reasons why people with MS (N = 101) engaged in these activities. Phase 2 used face-to-face semistructured interviews of people with MS (N = 16) to explore the meanings ascribed to exercise and physical activity. Phase 3 explored the perceptions of physiotherapists (N = 14) about exercise and physical activity using three focus groups. Using the International Classification of Functioning, Disability, and Health as a theoretical framework to underpin this study, the authors discuss the key factors, for example, emphasis on the contextual factors, that drive decision making around exercise and physical activity participation in people with MS and explore the clinical implications to health professionals.

Subcutaneous cladribine to treat multiple sclerosis: experience in 208 patients.

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.

Can We Improve the Monitoring of People With Multiple Sclerosis Using Simple Tools, Data Sharing, and Patient Engagement?

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.

Measuring Stigma to Assess the Social Justice Implications of Health-Related Policy Decisions: Application to Novel Treatment Regimens for Multidrug-Resistant Tuberculosis.

In making policy decisions with constrained resources, an important consideration is the impact of alternative policy options on social justice. Social justice considers interactions between individuals and society and can be conceptualized across domains of agency, association, and respect. Despite its importance, social justice is rarely considered formally in health policy decision making, partially reflecting challenges in its measurement. We define three criteria for considering social justice in health-related policy decisions: 1) linkage of social justice to a measurable construct; 2) ability to reproducibly and feasibly estimate the impacts of a policy decision on the selected construct; and 3) appropriate presentation to decision makers of the expected social justice implications using that construct. We use preliminary data from qualitative interviews from three groups of respondents in South Africa and Uganda to demonstrate that stigma meets the first of these criteria. We then use the example of policy addressing novel treatment regimens for multidrug-resistant tuberculosis and a validated tuberculosis stigma scale to illustrate how policy effects on stigma could be estimated (criterion 2) and presented to decision makers in the form of justice-enhanced cost-effectiveness analysis (criterion 3). Finally, we provide a point-by-point guide for conducting similar assessments to facilitate consideration of social justice in health-related policy decisions. Our case study and guide for how to make social justice impacts more apparent to decision makers also illustrates the importance of local data and local capacity. Performing social justice assessments alongside more traditional evaluations of cost-effectiveness, budget impact, and burden of disease could help represent data-informed considerations of social justice in health care decision making more broadly.

'I can do this': a qualitative exploration of acceptability and experiences of a physical activity behaviour change intervention in people with multiple sclerosis in the UK.

OBJECTIVES: The purpose of this study was to explore the experiences of people with multiple sclerosis (MS) who participated in iStep-MS, a feasibility randomised controlled trial of a behaviour change intervention that aimed to increase physical activity and reduce sedentary behaviour. DESIGN: A qualitative approach was undertaken embedded in the feasibility randomised controlled trial. One-to-one semi-structured interviews were conducted and analysed using Framework analysis. SETTING: Participants were recruited from a single MS therapy centre in the southeast of England, UK. PARTICIPANTS: Sixty people with MS were randomly allocated in a 1:1 ratio to the intervention or usual care. Following a purposive sampling strategy, 15 participants from the intervention arm undertook 1:1 semi-structured interviews. INTERVENTIONS: The iStep-MS intervention consisted of four therapist-led sessions over 12 weeks, supported by a handbook and pedometer. RESULTS: Three themes were identified from the data. "I can do this": developing competence in physical activity highlights the enhanced physical activity confidence gained through goal setting and accomplishment. "I felt valued": the nurturing culture provides an overview of the supportive and non-judgemental environment created by the programme structure and therapeutic relationship. Finally, "What can I do?": empowered enactment describes the transition from the supported iStep-MS intervention to intrinsically motivated physical activity enactment. CONCLUSIONS: Overall, this study supports the acceptability of the iStep-MS intervention and identified key areas that supported participants to be physically active. TRIAL REGISTRATION NUMBER: ISRCTN15343862.

A qualitative exploration of physiotherapists' perceptions about exercise and physical activity: reflections on the results from a Delphi Study.

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.Implications for rehabilitationPhysiotherapists 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.

The meaning of exercise and physical activity in community dwelling people with multiple sclerosis.

Purpose: This study explored the meanings community dwelling people with multiple sclerosis ascribe to exercise and physical activity.Method: Using a qualitative approach, 16 face-to-face, semi-structured interviews were conducted. Data were analysed using Framework Analysis and emerging themes developed.Results: Five themes were identified: "A Type of Movement", "The Impact of Exercise and Physical Activity", "It Changes", "Sense of Loss" and "Coping with Multiple Sclerosis". The findings demonstrated that people with multiple sclerosis held a multidimensional and complex view about exercise and physical activity.Conclusion: 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 RehabilitationHealth 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.

Safety, feasibility, acceptability and effects of a behaviour-change intervention to change physical activity behaviour among people with multiple sclerosis: Results from the iStep-MS randomised controlled trial.

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.