Improving telehealth for persons with multiple sclerosis - a cross-sectional study from the Australian MS longitudinal study.

PURPOSE: The COVID-19 pandemic impacted healthcare delivery, especially for people with chronic disease. We investigated telehealth use by persons with multiple sclerosis (MS) during the COVID-19 pandemic and their suggestions to improve their telehealth experience. METHODS: From persons with MS, we collected data on demographic, disease-related and social determinants of health, telehealth use during the COVID-19 pandemic, satisfaction with telehealth, and suggestions to improve telehealth. We conducted univariate log-binomial regression to establish factors associated with telehealth use versus no use, summarised experiences and suggestions for improvement with frequency tables, and conducted thematic analysis on free-text suggestions for improvement. RESULTS: Of 1,485 participants, 69.8% used telehealth during the first phase of the COVID-19 pandemic. Only small differences were observed for demographic, disease and social health determinants between telehealth users and non-users. Most participants who used telehealth had good or very good experiences (new providers:74.3%; existing providers:78.6%). The most common suggestion for improving telehealth experience was "guidance on preparing for telehealth sessions." Participants also wanted expansion in telehealth availability and utility. CONCLUSION: Persons with MS in Australia commonly used telehealth during the COVID-19 pandemic and were generally satisfied with their experiences. Implementing the suggested improvements will help optimise telehealth for persons with MS. REGISTRATION: N/A.

Australians with multiple sclerosis (MS) had good or very good experiences of telehealth during the first year of the pandemic.Telehealth is a useful consultation tool for many rehabilitation professions and may be appropriate for use across the whole MS population.To improve the delivery of rehabilitation through telehealth, provision of better guidance on preparing for telehealth consultations and provision of digital equipment to monitor their health is wanted by persons with MS.Rehabilitation professionals and researchers should take opportunities to identify if proficiency in the English language and cultural background may influence experiences with telehealth in persons with MS.

Safety of exercise training in multiple sclerosis: a protocol for an updated systematic review and meta-analysis.

BACKGROUND: There has been an exponential growth in the number of clinical research studies regarding exercise training in multiple sclerosis, and literature reviews and meta-analyses have documented the many benefits of exercise training. This research further requires careful review for documenting the safety of exercise training in multiple sclerosis, as clarity on safety represents a major hurdle in the clinical prescription of exercise behaviour. OBJECTIVES: To enhance understanding of the feasibility of exercise in multiple sclerosis, we (1) provide a protocol of a systematic review and meta-analysis that summarises rates and risks of clinical relapse, adverse events (i.e., an unfavourable outcome that occurs during the intervention delivery time period), and serious adverse events (i.e., an untoward occurrence that results in death or is life threatening, requires hospitalisation, or results in disability during the intervention delivery time period), as well as retention, adherence, and compliance, from randomised controlled trials of exercise training in persons with multiple sclerosis; and (2) identify moderators of relapse, adverse events, and serious adverse event rates. METHODS: Eight field-relevant databases will be searched electronically. Studies that involve a randomised controlled trial of exercise training (with non-exercise, non-pharmacological, comparator), report on safety outcomes, and include adults with multiple sclerosis will be included. Rates and relative risks of the three primary outcomes (relapse, adverse event, and serious adverse event) will be calculated and reported each with standard error and 95% confidence interval. Random-effects meta-analysis will estimate mean population relative risk for outcomes. Potential sources of variability, including participant characteristics, features of the exercise stimulus, and comparison condition, will be examined with random-effects meta-regression with maximum likelihood estimation. DISCUSSION: The results from this systematic review and meta-analysis will inform and guide healthcare practitioners, researchers, and policymakers on the safety of exercise training in persons with multiple sclerosis. Where possible, we will identify the impact of exercise type, exercise delivery style, participant disability level, and the prescription of exercise guidelines, on the safety of exercise training. The result will identify critical information on the safety of exercise in persons with multiple sclerosis, while also identifying gaps in research and setting priorities for future enquiries. SYSTEMATIC REVIEW REGISTRATION: PROSPERO 2020 CRD42020190544.

The effect of the Australian bushfires and the COVID-19 pandemic on health behaviours in people with multiple sclerosis.

BACKGROUND: Crises and disasters disproportionally impact people with chronic health conditions such as multiple sclerosis (MS). OBJECTIVE: To assess the impact of the COVID-19 pandemic and the Australian Black Summer Bushfires on health behaviours in people with MS. METHODS: People with MS, carers, healthcare and advocacy professionals were recruited online between May-July 2020 for an online survey and telephone interviews. RESULTS: Survey items relating to health behaviours were completed by 113 people with MS, and 18 people with MS, 4 MS advocates, 5 healthcare professionals, and 2 carers were interviewed. The bushfires affected 34.5% and the pandemic affected 74.3% of survey participants with MS. The pandemic and bushfires caused a decrease in physical activity in 53.8% and 55.3% of participants respectively, as well as increases in unhealthy eating (43.6% and 24.3% respectively) and alcohol consumption (35.4% and 10.5% respectively), and a decrease in typical sleeping patterns (40.5% and 39.5% respectively). Conversely, 27.5% of participants reported an increase in physical activity during the pandemic. Interview data detailed the circumstances and motivations for changes in health behaviours, as well as consequences, including reduced mobility, fitness, mood disturbances, and weight gain. CONCLUSION: There is a need to increase support and health promotion for people with MS to maintain or initiate positive health behaviours, especially in times of adversity.

Changing Behaviour towards Aerobic and Strength Exercise (BASE): Design of a randomised, phase I study determining the safety, feasibility and consumer-evaluation of a remotely-delivered exercise programme in persons with multiple sclerosis.

BACKGROUND: Multiple sclerosis is a chronic progressive neurological disease. Evidence attests to the benefits of exercise, guidelines for exercise in multiple sclerosis are available. Remote-delivery of exercise adherence programmes based on the exercise guidelines require urgent testing. AIMS: The design, and outcomes of Behaviour towards Aerobic and Strength Exercise in MS (BASE-MS), a remotely-delivered exercise training study based principles of behaviour change, will further evaluate the remote-delivery of the current exercise guidelines. METHODS: BASE is a 4-month clinically relevant randomised controlled trial to explore the delivery of a remotely supervised, guidelines-based exercise programme for persons with multiple sclerosis, underpinned by principles of health behaviour change. Initially, 72 persons with mild to moderate multiple sclerosis will be randomised in a 1:1:1 allocation to receive the BASE programme, or act as controls continuing usual care. On programme completion, exercise participants will be further randomised to an optimised adherence treatment or usual adherence. Our online survey assesses the primary outcome of exercise participation, and secondary outcomes of symptoms, and correlates of behaviour change at baseline, month four, month five and month eleven. Online surveys will capture coach and participant feedback to identify the contexts, mechanisms and outcomes of BASE implementation. CONCLUSIONS: The research and clinical landscape for MS management must remain in-step with public health and health communication. BASE tests the remote-delivery of the current exercise guidelines for exercise in persons with MS. Safety, feasibility and evaluative outcomes will provide rich data for future remote-delivery of exercise in neurological conditions.

Generalised cognitive motor interference in multiple sclerosis.

Researchers have examined cognitive motor interference (CMI) for lower extremity function in MS, but have not examined this in the upper extremity. This study examined CMI for both lower and upper extremity motor tasks in persons with MS and without MS. Eighty-two persons walked on a GAITRite electronic walkway (velocity) and performed the nine-hole peg test (NHPT, seconds) without (single task) and with a cognitive challenge (dual task). The data were analysed with mixed-factor ANOVA and Pearson correlations. When comparing MS and controls, there were statistical significant and exceptionally large Task main effects on gait velocity (ηp(2)=.41; F1,60=55.78; p<.005) and NHPT performance (ηp(2)=.62; F1,60=127.8; p<.005). When considering disability status among those with MS, there were statistically significant and large Task main effects on velocity (ηp(2)=.38; F1,60=37.3; p<.005) and NHPT test (ηp(2)=.62; F1,60=95.7; p<.005). The dual task cost of walking and performing the NHPT were significantly correlated in the entire sample, those with MS and controls, and in those with MS who had mild, moderate, and severe disability (all |r|>.450). CMI occurs in both the lower and upper extremities, and is comparable between persons with and without MS and across MS disability level.

Accelerometer output and its association with energy expenditure during manual wheelchair propulsion.

STUDY DESIGN: This is an experimental design. OBJECTIVES: This study examined the association between rates of energy expenditure (that is, oxygen consumption (VO2)) and accelerometer counts (that is, vector magnitude (VM)) across a range of speeds during manual wheelchair propulsion on a motor-driven treadmill. Such an association allows for the generation of cutoff points for quantifying the time spent in moderate-to-vigorous physical activity (MVPA) during manual wheelchair propulsion. SETTING: The study was conducted in the University Laboratory. METHODS: Twenty-four manual wheelchair users completed a 6-min period of seated rest and three 6-min periods of manual wheelchair propulsion on a motor-driven wheelchair treadmill. The 6-min periods of wheelchair propulsion corresponded with three treadmill speeds (1.5, 3.0 and 4.5 mph) that elicited a range of physical activity intensities. Participants wore a portable metabolic unit and accelerometers on both wrists. Primary outcome measures included steady-state VO2 and VM, and the strength of association between VO2 and VM was based on the multiple correlation and squared multiple correlation coefficients from linear regression analyses. RESULTS: Strong linear associations were established between VO2 and VM for the left (R=0.93±0.44; R2=0.87±0.19), right (R=0.95±0.37; R2=0.90±0.14) and combined (R=0.94±0.38; R2=0.88±0.15) accelerometers. The linear relationship between VO2 and VM for the left, right and combined wrists yielded cutoff points for MVPA of 3659 ±1302, 3630±1403 and 3644±1339 counts min(-1), respectively. CONCLUSION: We provide cutoff points based on the linear association between energy expenditure and accelerometer counts for estimating time spent in MVPA during manual wheelchair propulsion using wrist-worn accelerometry. The similarity across wrist location permits flexibility in selecting a location for wrist accelerometry placement.

Psychometric properties of quality of life and health-related quality of life assessments in people with multiple sclerosis.

PURPOSE: There is substantial interest in testing interventions for improving quality of life (QOL) and health-related quality of life (HRQOL) in people with multiple sclerosis (MS). Yet, there is limited research on the psychometric properties of QOL [e.g., Satisfaction with Life Scale (SWLS), Leeds MS Quality of Life Scale (LMSQOL)] and HRQOL [e.g., Short Form 12 Health Survey (SF-12) and Multiple Sclerosis Impact Scale-29 (MSIS-29)] measures in this population. Such research is important for designing and interpreting interventions. We examined the test-retest reliability, measurement error, and interpretability of QOL (i.e., SWLS and LMSQOL) and HRQOL (i.e., SF-12 and MSIS-29) measures over 6 months in people with MS. METHODS: Individuals with MS (n = 274) completed the SWLS, LMSQOL, SF-12 and MSIS-29 on two occasions, 6 months apart. We estimated test-retest reliability [intraclass correlation coefficient (ICC)], measurement error [standard error of measurement (SEM) and coefficient of variation] and interpretability [smallest detectable change (SDC)]. RESULTS: Intraclass correlation coefficient values ranged between moderate and good (ICC range = 0.669-0.883); the MSIS-29 physical component had the best reliability, and the SF-12 mental component had the worst reliability. Measurement error, based on percent SEM, varied among measures; the physical and mental components of the SF-12 (%SEM = 4.6 and 5.3, respectively) had the best measurement error, and the MSIS-29 mental component (%SEM = 13.2) and the SWLS (%SEM = 12.7) had the worst measurement error. Interpretability, based on percent SDC, varied among measures; interpretability was best for the physical and mental components of the SF-12 (%SDC = 12.7 and 14.7, respectively) and worst for the MSIS-29 mental component (%SDC = 36.7) and the SWLS (%SDC = 35). CONCLUSION: We provide novel data for helping researchers and clinicians select and interpret QOL and HRQOL measures and scores for interventions among people with MS. Such information will better inform our understanding of intervention effectiveness.

Psychometric properties of the Fatigue Severity Scale and the Modified Fatigue Impact Scale.

OBJECTIVE: Fatigue is one of the most common, debilitating and life altering symptoms experienced by those with multiple sclerosis (MS) and has become the focus of therapeutic interventions and clinical rehabilitation. There is limited evidence regarding the psychometric properties and clinical relevance of fatigue outcomes for interpreting the effectiveness of intervention and rehabilitation strategies. This study determined the reliability, precision and clinically important change of the uni-dimensional Fatigue Severity Scale (FSS) and the multi-dimensional Modified Fatigue Impact Scale (MFIS). METHODS: The FSS and MFIS along with physical, psychological and cognitive clinical outcomes were administered to a sample of 82 persons with MS in a clinical research setting on two time points, separated by six months. Intraclass correlation coefficient (ICC) analyses established reliability; standard error of measurement (SEM) and coefficient of variation (CV) determined precision; minimal detectable change (MDC) defined clinically important change. RESULTS: Participants varied in type of MS and disability status, with 77% of participants classified as having substantial fatigue, based on the criteria of a mean FSS score ≥4. The MFIS (ICC=0.863) and the FSS (ICC=0.751) had acceptable reliability over six months. Precision was reasonable for both scales (based on SEM and CV estimates) but better for the FSS. MDC estimates were established and were lower for the FSS. CONCLUSION: Reliability of the FSS and MFIS falls within acceptable ranges, and precision and clinically important change estimates provide guidelines for interpreting change in scores from these outcomes in clinical research of intervention and rehabilitation approaches for managing fatigue.

A qualitative exploration of the impact of a 12-week group exercise class for those moderately affected with multiple sclerosis.

PURPOSE: The evidence base to support therapeutic exercise for people with multiple sclerosis (MS) is improving; however few studies have considered the patients' perspective. This study aimed to explore the experiences and views of people moderately affected with MS following participation in a 12-week exercise programme. METHOD: Twenty people with MS participated in a group exercise class. Subsequently, four men and ten women took part in one of two focus groups. Semi-structured questions were used to elicit participants' views on the exercise class, outcomes from exercise and the exercise class and any perceived facilitators or barriers to exercise. Data were analysed using a general inductive method. RESULTS: Benefits to participating in exercise for those with MS included social support and symptom improvement. Psychosocial factors, symptoms and lack of service emerged as exercise barriers. Three inter-related themes emerged; (1) The exercise class developed as a bridge to allow participants to realise, (2) the benefits of the class, helping them to overcome and (3) barriers to exercise. CONCLUSION: Taking part in an exercise class was a positive experience for people with MS. Healthcare professionals should work with exercise professionals to provide feasible exercise opportunities to help those with MS benefit from therapeutic exercise.

The effects of a 12-week leisure centre-based, group exercise intervention for people moderately affected with multiple sclerosis: a randomized controlled pilot study.

OBJECTIVE: To establish the effects of a 12-week, community-based group exercise intervention for people moderately affected with multiple sclerosis. DESIGN: Randomized controlled pilot trial. SETTING: Two community leisure centres. PARTICIPANTS: Thirty-two participants with multiple sclerosis randomized into intervention or control groups. INTERVENTION: The intervention group received 12 weeks of twice weekly, 60-minute group exercise sessions, including mobility, balance and resistance exercises. The control group received usual care. MAIN OUTCOME MEASURES: An assessor blinded to group allocation assessed participants at baseline, after eight weeks and after 12 weeks. The primary outcome measure was 25-foot (7.6 m) walk time, secondary outcomes assessed walking endurance, balance, physical function, leg strength, body mass index, activity levels, fatigue, anxiety and depression, quality of life and goal attainment. RESULTS: The intervention made no statistically significant difference to the results of participants' 25-foot walk time. However the intervention led to many improvements. In the intervention group levels of physical activity improved statistically between baseline and week 8 (P < 0.001) and baseline and week 12 (P = 0.005). Balance confidence results showed a significant difference between baseline and week 12 (P = 0.013). Good effect sizes were found for dynamic balance (d = 0.80), leg strength (d = 1.33), activity levels (d = 1.05) and perceived balance (d = 0.94). CONCLUSION: The results of the study suggest that community-based group exercise classes are a feasible option for people moderately affected with multiple sclerosis, and offer benefits such as improved physical activity levels, balance and leg strength.