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.

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.

"I'm in a very good frame of mind": a qualitative exploration of the experience of standing frame use in people with progressive multiple sclerosis.

OBJECTIVES: The study aim was to explore the experiences of people with progressive multiple sclerosis (MS) and their standing assistants during their participation in Standing Up in Multiple Sclerosis, a randomised controlled trial (RCT) of a home-based, self-managed standing frame programme. DESIGN: A qualitative approach, using audio diary methodology was used to collect data contemporaneously. Diary data were transcribed verbatim and analysed using thematic analysis. SETTING: Participants were recruited from eight healthcare organisations in two regions of the UK. The intervention was home-based. PARTICIPANTS: As part of the RCT, 140 participants were randomly allocated to either usual care or usual care plus a standing frame programme. Using a sampling matrix 12 people with progressive MS (6 female, aged 35-71 years, Expanded Disability Status Scale 6.5-8.0) and 8 standing assistants (4 female) kept audio diaries of their experiences. INTERVENTION: The standing frame programme involved two face-to-face home-based physiotherapy sessions to set up the standing frame programme, supplemented by educational material designed to optimise self-efficacy. Participants were encouraged to stand for at least 30 min, three times a week for the 36-week study period. RESULTS: Four main themes were identified: "Feeling like the old me"; 'Noticing a difference'; "I want to do it right" and "You have a good day, you have a bad day". CONCLUSIONS: Supported standing helped people with progressive MS feel more like their old selves and provided a sense of normality and enjoyment. People noticed improvements in physical and psychological symptoms, which were often associated with increased participation in activities they valued. Provision of support from a physiotherapist and recognition of the variable nature of the condition were highlighted as factors to consider when establishing a standing programme. TRIAL REGISTRATION NUMBER: ISRCTN69614598.

'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.

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.

Assessment of a home-based standing frame programme in people with progressive multiple sclerosis (SUMS): a pragmatic, multi-centre, randomised, controlled trial and cost-effectiveness analysis.

BACKGROUND: People severely impaired with progressive multiple sclerosis spend much of their day sitting, with very few options to improve motor function. As a result, secondary physical and psychosocial complications can occur. Effective and feasible self-management strategies are needed to reduce sedentary behaviour and enhance motor function. In this study, we aimed to assess the clinical and cost effectiveness of a home-based, self-managed, standing frame programme. METHODS: SUMS was a pragmatic, multicentre, randomised controlled superiority trial of people with progressive multiple sclerosis and severe mobility impairment, undertaken in eight centres from two regions in the UK. The study had assessor-blinded outcome assessments with use of clinician-rated and patient-rated measures at baseline, 20 weeks, and 36 weeks. After baseline assessment, participants were randomised (1:1) by computer-generated assignment to either a standing frame programme plus usual care or usual care alone. The intervention consisted of two home-based physiotherapy sessions (60 min each) to set up the standing frame programme, supported by six follow-up telephone calls (15 min per call). Participants were asked to stand for 30 min, three times per week over 20 weeks, and encouraged to continue in the longer term, although no further physiotherapy support was provided. The primary clinical outcome was motor function measured by the Amended Motor Club Assessment (AMCA) score at week 36, analysed in the modified intention-to-treat population (excluding only patients who were deemed ineligible after randomisation, those who withdrew from the trial and were unwilling for their previously collected data to be used, or those who did not provide baseline and week 36 measurements). A 9-point AMCA score change was considered clinically meaningful a priori. Adverse events were collected through a daily preformatted patient diary throughout the 36 weeks and analysed in the modified intention-to-treat population. An economic assessment established the resources required to provide the standing frame programme, estimated intervention costs, and estimate cost effectiveness. This trial is registered with the International Standard Randomised Controlled Trials, number ISRCTN69614598. FINDINGS: Between Sept 16, 2015, and April 28, 2017, 285 people with progressive multiple sclerosis were screened for eligibility, and 140 were randomly assigned to either the standing frame group (n=71) or the usual care group (n=69). Of these, 122 completed the primary outcome assessment (61 participants in both groups) for the modified intention-to-treat analysis. The use of the standing frame resulted in a significant increase in AMCA score compared with that for usual care alone, with a fully adjusted between-group difference in AMCA score at 36 weeks of 4·7 points (95% CI 1·9-7·5; p=0·0014). For adverse events collected through patient diaries, we observed a disparity between the two groups in the frequency of short-term musculoskeletal pain (486 [41%] of 1188 adverse events in the standing frame group vs 160 [22%] of 736 adverse events in the usual care group), which was potentially related to the intervention. The musculoskeletal pain lasted longer than 7 days in five participants (two in the standing frame group and three in the usual care group). No serious adverse events related to the study occurred. The standing frame group had a mean 0·018 (95% CI -0·014 to 0·051) additional quality-adjusted life-years (QALYs) compared with those of the usual care group, and the estimated incremental cost-per-QALY was approximately £14 700. INTERPRETATION: The standing frame programme significantly increased motor function in people with severe progressive multiple sclerosis, although not to the degree that was considered a priori as clinically meaningful. The standing frame is one of the first physiotherapy interventions to be effective in this population. We suggest that the programme is feasible as a home-based, self-managed intervention that could be routinely implemented in clinical practice in the UK. FUNDING: UK National Institute of Health Research.

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.