Validity of Fitbit activity monitoring for adults with progressive muscle diseases.

PURPOSE: Measuring physical activity informs activity recommendations in clinical practice and provides outcomes in clinical trials that are meaningful to patients. Activity assessment in muscle disease is challenging and there is insufficient evidence to support any single activity measure; however, multi-modal activity measurement might have potential. MATERIALS AND METHODS: This two-part study included 20 and 95 adults with progressive muscle diseases with mobility ranging from independent to assisted, including wheelchair users. Their activity was measured using a multi-sensor Fitbit activity monitor, for which criterion validity and acceptability were tested in study 1 and validity, reliability, and responsiveness were tested in the longitudinal, home-based study 2. RESULTS: Study 1: Fitbit was acceptable and had strong criterion validity (rho/kappa ≥0.90), although up to 15% measurement error. Study 2: Fitbit had satisfactory concurrent and construct validity, reliability, and responsiveness. However, Fitbit active minutes registered 75 min more activity per week than gold standard moderate and vigorous physical activity (MVPA) time. CONCLUSIONS: Fitbit had satisfactory measurement properties for monitoring physical activity in adults with progressive muscle diseases. However, Fitbit should not be considered an exact step counter, heart rate monitor or calorimeter and Fitbit active minutes are not synonymous with MVPA time.Implications for rehabilitationPeople with progressive muscle diseases mobilise independently, with walking aids and with wheelchairs; physical activity measurement can be challenging in this population.Multisensor smart activity monitoring by Fitbit had satisfactory validity, reliability, responsiveness, and acceptability for the estimation of physical activity in adults with progressive muscle diseases.Fitbit active minutes are not synonymous with moderate and vigorous physical activity (MVPA) time measured using a research grade accelerometer.

The validity of the International Physical Activity Questionnaire (IPAQ) for adults with progressive muscle diseases.

PURPOSE: Measuring the physical activity of adults with progressive muscle diseases is important to inform clinical practice, for activity recommendations and for outcomes meaningful to participants in clinical trials. Despite its wide use, the measurement properties of the International Physical Activity Questionnaire (IPAQ) have not been established in a muscle disease population. MATERIALS AND METHODS: The sample of 103 adults with progressive muscle diseases included independently mobile participants and wheelchair users. Their home-based activity measured by the IPAQ was compared to simultaneous weeks of accelerometer activity data collected remotely in a longitudinal, measure evaluation study. Validity, reliability, and responsiveness were evaluated for the IPAQ alone, and for the IPAQ used in conjunction with a smart activity monitor. RESULTS: The IPAQ did not demonstrate satisfactory criterion validity, reliability or responsiveness and it systematically overestimated moderate and vigorous physical activity time by 161 minutes per week. Measurement properties of the IPAQ were improved when it was used in combination with a smart activity monitor. CONCLUSIONS: The IPAQ did not have satisfactory measurement properties compared to accelerometry in adults with progressive muscle disease. Combining self-report and objective activity measures might improve the accuracy of physical activity assessment in this and other comparable populations.Implications for RehabilitationPhysical activity is a meaningful health outcome for adults with progressive muscle diseases, for whom precise activity quantification is important because of the potential for activity-related disease exacerbation.The International Physical Activity Questionnaire (IPAQ) had unsatisfactory measurement properties compared to accelerometry; however, these were improved by adjunctive smart activity monitoring.Objective or combined physical activity measurement is recommended over self-report alone for clinical assessment of physical activity as part of rehabilitation and self-management programmes.

COVID-19 lockdown impact on the physical activity of adults with progressive muscle diseases.

INTRODUCTION: This short article summarises findings about reduced physical activity of adults with progressive muscle disease as a result of COVID-19 lockdown. METHODS: As part of an ongoing longitudinal cohort study, we prospectively and objectively measured physical activity using accelerometry at baseline in 2019 and follow-up in 2020. A subset of 85 participants incidentally had follow-up data collected during the first UK COVID-19 lockdown from 23 March to 4 July 2020. Thus, for this cohort we had activity data from before and during the COVID-19 pandemic and we were able to prospectively and accurately quantify the changes in their physical activity. RESULTS: Our data highlighted reduced overall activity intensity and reduced light activity time in particular. CONCLUSIONS: From our findings, we can infer specific evidence-based recommendations about how to redress inactivity secondary to COVID-19 restrictions for adults with progressive muscle diseases. These recommendations are likely to be generalisable to other groups who are vulnerable to functional decline secondary to prolonged inactivity.

Smartphone Apps Targeting Physical Activity in People With Rheumatoid Arthritis: Systematic Quality Appraisal and Content Analysis.

BACKGROUND: Rheumatoid arthritis (RA) is a disabling, inflammatory joint condition affecting 0.5%-1% of the global population. Physical activity (PA) and exercise are recommended for people with RA, but uptake and adherence tend to be low. Smartphone apps could assist people with RA to achieve PA recommendations. However, it is not known whether high quality, evidence-informed PA apps that include behavior change techniques (BCTs) previously identified as effective for PA adherence are available for people with RA. OBJECTIVE: This study aims to systematically identify apps that include goals to facilitate PA for adults with RA and assess app quality and content for the inclusion of relevant BCTs against recommendations for cardiorespiratory, resistance, flexibility, and neuromotor PA and exercise. METHODS: A systematic search of the Apple App Store and Google Play Store in the United Kingdom was conducted to identify English language apps that promote PA for adults with RA. Two researchers independently assessed app quality (mobile app rating scale [MARS]; range 0-5) and content (BCT Taxonomy version 1, World Health Organization, the American College of Sports Medicine, and the European League against Rheumatism recommendations for PA). The completeness of reporting of PA prescription was evaluated using a modified version of the Consensus on Exercise Reporting Template (CERT; range 0-14). RESULTS: A total of 14,047 apps were identified. Following deduplication, 2737 apps were screened for eligibility; 6 apps were downloaded (2 on the Apple App Store and 4 on the Google Play Store), yielding 4 unique apps. App quality varied (MARS score 2.25-4.17). Only 1 app was congruent with all aspects of the PA recommendations. All apps completely or partially recommended flexibility and resistance exercises, 3 apps completely or partially advised some form of neuromotor exercise, but only 2 offered full or partial guidance on cardiorespiratory exercise. Completeness of exercise reporting was mixed (CERT scores 7-14 points) and 3-7 BCTs were identified. Two BCTs were common to all apps (information about health consequences and instruction on how to perform behavior). Higher quality apps included a greater number of BCTs and were more closely aligned to PA guidance. No published trials evaluating the effect of the included apps were identified. CONCLUSIONS: This review identifies 4 PA apps of mixed quality and content for use by people with RA. Higher quality apps were more closely aligned to PA guidance and included a greater number of BCTs. One high-quality app (Rheumatoid Arthritis Information Support and Education) included 7 BCTs and was fully aligned with PA and exercise guidance. The effect of apps on PA adherence should be established before implementation.

The effect of interactive digital interventions on physical activity in people with inflammatory arthritis: a systematic review.

The aim of this systematic review was to evaluate the evidence from randomised controlled trials (RCTs) evaluating the effectiveness of interactive digital interventions (IDIs) for physical activity (PA) and health related quality of life (HRQoL) in people with Inflammatory Arthritis [rheumatoid arthritis (RA), juvenile idiopathic arthritis (JIA) axial Spondyloarthritis (AS) and psoriatic arthritis (PsA)]. Seven electronic databases identified published and unpublished studies. Two reviewers conducted independent data extraction and quality assessment using the Cochrane risk of bias tool (RoB). The primary outcome was change in objective PA after the intervention; secondary outcomes included self-reported PA and HRQoL after the intervention and objective or self-reported PA at least 1 year later. Five manuscripts, reporting four RCTs (three high and one low RoB) representing 492 (459 RA, 33 JIA) participants were included. No trials studying PsA or AS met the inclusion criteria. Interventions ranged from 6 to 52 weeks and included 3-18 Behaviour Change Techniques. Due to heterogeneity of outcomes, a narrative synthesis was conducted. No trials reported any significant between group differences in objective PA at end of intervention. Only one low RoB trial found a significant between group difference in self-reported vigorous [MD Δ 0.9 days (95% CI 0.3, 1.5); p = 0.004], but not moderate, PA in people with RA but not JIA. There were no between group differences in any other secondary outcomes. There is very limited evidence for the effectiveness of IDIs on PA and HRQoL in RA and JIA and no evidence for their effectiveness in PsA or AS.

A study investigating the experience of working for people with Parkinson's and the factors that influence workplace success.

PURPOSE: The experience of working for people with Parkinson's disease (PD) is known to vary substantially and affects the length of time in employment after diagnosis. This study aims at exploring the experience of working for people with PD and to create a model detailing the factors that influence their workplace success. METHOD: A qualitative grounded theoretical approach was used. Seventeen working people with PD were selected for individual interviews which were conducted sequentially. Data were analyzed in an iterative, inductive process of coding to identify common themes and to generate a model that explains the data. RESULTS: Two core themes that influence workplace success for people with PD were identified. 'Feeling in control of Parkinson's' describes the actions that they make to remain in control. 'Being able to control Parkinson's in the workplace' describes external factors that they believe influence their ability to work successfully. CONCLUSIONS: The theoretical model demonstrates how a variety of factors interplay to influence workplace success for people with PD. PD is often poorly understood but the ability to explore and devise strategies for oneself and the flexibility to work around a fluctuating daily pattern were regularly identified as strategies that facilitated success. Implications for Rehabilitation The experience of working for people with Parkinson's is variable and is influenced by how in control the person with Parkinson's feels and the strategies they use to manage challenges. There is a need for greater workplace education to enhance employers' understanding of Parkinson's to ensure better support for strategies or reasonable adjustments by employers. People with Parkinson's are able to devise strategies to overcome some of their own specific workplace challenges including through technology but often, they prefer not to use disability aids. Daily fluctuations in Parkinson's symptoms are an important factor influencing workplace success.

A Cross-Cultural Study of Risky Online Self-Presentation.

The use of social media is pervasive among young adults. However, not all posted content is beneficial to their self-presentation, but can have negative and damaging consequences. This study investigated how individual differences in self-monitoring and impulsiveness influence risky online self-presentation in British and Italian samples. British participants (n = 88) were more likely to post comments and images related to their alcohol and drug use, whereas Italian (n = 90) participants posted more offensive content and personal information. High self-monitoring and high impulsiveness was positively predictive of risky self-presentation online regardless of nationality, highlighting the normative influence of social media culture, and the influence of both spontaneous and deliberative behavior on posting inappropriate content online. These novel insights regarding the way young adults present themselves on social network sites could help explain differences in self-presentation.

Multidisciplinary team care for people with rheumatoid arthritis: a systematic review and meta-analysis.

The objective of this study was to systematically review the evidence from randomised controlled trials (RCTs) evaluating the effectiveness of multidisciplinary team (MDT) care for the management of disability, disease activity and quality of life (QoL) in adults with rheumatoid arthritis (RA). Data sources identified published (MEDLINE, PsychINFO, EMBASE, CINAHL, Web of Science, CENTRAL) and unpublished (OpenGrey) literature. Independent data extraction and quality assessment, using the Cochrane risk of bias tool, were conducted by two reviewers. The primary outcome was change in disability at 12 months; secondary outcomes included disability at other time points and disease activity and QoL at 12 months. Where possible, the pooled effect sizes were calculated for inpatient or outpatient MDT interventions. Four hundred and fifteen studies were retrieved. Twelve manuscripts, which reported 10 RCTs, representing 1147 participants were included. Only data from five high- or moderate-quality trials were pooled according to clinical setting. There was no difference in disability between inpatient MDT care and any comparison group [mean difference (95% confidence intervals) 0.04, -0.13 to 0.20] or between outpatient MDT care and comparison groups (0.09, -0.07 to 0.25) at 12 months. There was no difference in disability at 2 years or <12 months or disease activity and QoL at 12 months between MDT care and any comparison group. There is limited evidence evaluating the effect of MDT care on disability, disease activity or QoL in people with RA. There is likely to be no effect of MDT care on disability at 12 months or other time points.

Observer blind randomised controlled trial of a tailored home exercise programme versus usual care in people with stable inflammatory immune mediated neuropathy.

BACKGROUND: Inflammatory neuropathies such as Guillain-Barré syndrome, chronic inflammatory demyelinating polyradiculoneuropathy and paraproteinaemic demyelinating neuropathy are a heterogenous group of peripheral nerve disorders that affect around one to two people per 100,000. Whilst treatments such as intravenous immunoglobulin, plasma exchange and corticosteroids have generally positive results, long-term residual symptoms and associated activity limitations are common. There is currently no standardised care for patients with ongoing activity limitation and participation restriction as a result of inflammatory neuropathy IN but data from observational studies and a randomised controlled trial suggest that exercise either alone or as part of a multidisciplinary rehabilitation programme may be beneficial in improving activity limitation. Tailoring the intervention for participants following physiotherapy assessment and incorporating patient preference for type and location of exercise may be important. METHODS/DESIGN: The current study is a pragmatic, prospective, parallel observer-blind, randomised controlled trial to evaluate the efficacy and cost-effectiveness of a twelve week tailored home exercise programme versus advice and usual care. Seventy adults with stable immune mediated inflammatory neuropathy IN will be recruited to the study from two main sources: patients attending selected specialist peripheral nerve clinics in the South East and West Midlands of England and people with who access the GAIN charity website or newsletter. Participants will be randomised to receive either advice about exercise and usual care or a 12 week tailored home exercise programme. The primary outcome of activity limitation and secondary outcomes of fatigue, quality of life, self-efficacy, illness beliefs, mood and physical activity will be assessed via self-report questionnaire at baseline, 12 weeks and 12 months post intervention. Cost effectiveness and cost utility will be assessed via interview at baseline and 12 months post intervention. Intention to treat analysis will be our primary model for efficacy analysis. Semi-structured interviews will be conducted with a selected sample of participants in order to explore the acceptability of the intervention and factors affecting adherence to the exercise programme. DISCUSSION: This is the first randomised controlled trial to compare the efficacy and cost-effectiveness of tailored home exercise with advice about exercise and usual care for adults with inflammatory neuropathy. TRIAL REGISTRATION: Current Controlled Trials ISRCTN13311697.

Adolescents' and Young Adults' Online Risk Taking: The Role of Gist and Verbatim Representations.

Young people are exposed to and engage in online risky activities, such as disclosing personal information and making unknown friends online. Little research has examined the psychological mechanisms underlying young people's online risk taking. Drawing on fuzzy trace theory, we examined developmental differences in adolescents' and young adults' online risk taking and assessed whether differential reliance on gist representations (based on vague, intuitive knowledge) or verbatim representations (based on specific, factual knowledge) could explain online risk taking. One hundred and twenty two adolescents (ages 13-17) and 172 young adults (ages 18-24) were asked about their past online risk-taking behavior, intentions to engage in future risky online behavior, and gist and verbatim representations. Adolescents had significantly higher intentions to take online risks than young adults. Past risky online behaviors were positively associated with future intentions to take online risks for adolescents and negatively for young adults. Gist representations about risk negatively correlated with intentions to take risks online in both age groups, while verbatim representations positively correlated with online risk intentions, particularly among adolescents. Our results provide novel insights about the underlying mechanisms involved in adolescent and young adults' online risk taking, suggesting the need to tailor the representation of online risk information to different age groups.

Interventions for fatigue in peripheral neuropathy.

BACKGROUND: Persistent feelings of fatigue (or subjective fatigue), which may be experienced in the absence of physiological factors, affect many people with peripheral neuropathy. A variety of interventions for subjective fatigue are available, but little is known about their efficacy or the likelihood of any adverse effects for people with peripheral neuropathy. OBJECTIVES: To assess the effects of drugs and physical, psychological or behavioural interventions for fatigue in adults or children with peripheral neuropathy. SEARCH METHODS: On 5 November 2013, we searched the Cochrane Neuromuscular Disease Group Specialized Register, CENTRAL, MEDLINE, EMBASE, CINAHL Plus, LILACS and AMED. We also searched reference lists of all studies identified for inclusion and relevant reviews, and contacted the authors of included studies and known experts in the field to identify additional published or unpublished data. We also searched trials registries for ongoing studies. SELECTION CRITERIA: We considered for inclusion randomised controlled trials (RCTs) and quasi-RCTs comparing any form of intervention for fatigue management in adults with peripheral neuropathy with placebo, no intervention or an alternative form of intervention for fatigue. Interventions considered included drugs, pacing and grading of physical activity, general or specific exercise, compensatory strategies such as orthotics, relaxation, counselling, cognitive and educational strategies. DATA COLLECTION AND ANALYSIS: Two review authors independently assessed risk of bias and extracted study data. We contacted study authors for additional information. We collected information on adverse events from the included trials. MAIN RESULTS: The review includes three trials, which were all at low risk of bias, involving 530 people with peripheral neuropathy. The effects of amantadine from one randomised, double-blind, placebo-controlled, cross-over trial comparing amantadine with placebo for the treatment of fatigue in 80 people with Guillain-Barré syndrome (GBS) were uncertain for the proportion of people achieving a favourable outcome six weeks post-intervention (odds ratio (OR) 0.56 (95% confidence interval (CI) 0.22 to 1.35, N = 74, P = 0.16). We assessed the quality of this evidence as low. Two parallel-group randomised double-blind, placebo-controlled trials comparing the effects of two doses of ascorbic acid with placebo for reducing fatigue in adults with Charcot-Marie-Tooth disease type 1A (CMT1A) showed that the effects of ascorbic acid at either dose are probably small (standardised mean difference (SMD) -0.12 (95% CI -0.32 to 0.08, n = 404, P = 0.25)) for change in fatigue after 12 to 24 months (moderate quality evidence). Neither ascorbic acid study measured fatigue at four to 12 weeks, which was our primary outcome measure. No serious adverse events were reported with amantadine. Serious adverse events were reported in the trials of ascorbic acid. However,risk of serious adverse events was similar with ascorbic acid and placebo. AUTHORS' CONCLUSIONS: One small imprecise study in people with GBS showed uncertain effects of amantadine on fatigue. In two studies in people with CMT1A there is moderate-quality evidence that ascorbic acid has little meaningful benefit on fatigue. Information about adverse effects was limited, although both treatments appear to be well tolerated and safe in these conditions.There was no evidence available from RCTs to evaluate the effect of other drugs or other interventions for fatigue in either GBS, CMT1A or other causes of peripheral neuropathy. The cost effectiveness of different interventions should also be considered in future randomised clinical trials.

Electromyographic response to manual passive stretch of the hemiplegic wrist: accuracy, reliability, and correlation with clinical spasticity assessment and function.

BACKGROUND: The management of spasticity is important in neurorehabilitation and needs to be assessed accurately. The commonly used clinical tools have been criticized for lack of validity and sensitivity. OBJECTIVE: To investigate the reliability of electromyographic (EMG) response to manual stretches of the hemiplegic wrist and its correlation with clinical assessments of spasticity and physical function. METHODS: EMG activity was measured in 10 stroke patients and control participants (53.7 +/- 10 and 32 +/- 9.1 years respectively, mean +/- SEM) during 3 cycles of 10 seconds passive manual movements of the wrist at 60 to 360 degrees * s(-1). Isometric maximal voluntary contractions (MVC) strength, range of movement (ROM) of the wrist flexors and extensors, spasticity (Modified Ashworth Scale [MAS]) and hand function (Block and Box Test [BBT]) were also assessed. RESULTS: EMG activity of the stroke patients increased with velocity from 4% to 40% MVC (P < .001) but there was none in the controls. It was unaffected by repetition and good to moderate reliability occurred at all speeds (ICC, 0.71-0.81). EMG correlated negatively with MVC strength (r = -.9), active wrist flexion ROM ( r = -.8), and hand function scores (r = -.7), but not with clinical measures of spasticity except at the lowest velocity (r = .72). CONCLUSIONS: Consistent and accurate stretch velocities and EMG responses can be achieved with manual wrist stretches for the assessment of the neural component of spasticity. These objective tests did not correlate well with the standard clinical assessment of spasticity. They showed significant negative relationships with function, indicating that increased reflex excitability contributes to hand disability after stroke.

The reliability and validity of the physiological cost index in healthy subjects while walking on 2 different tracks.

OBJECTIVE: To investigate the reliability and validity of the Physiological Cost Index (PCI) scores, as a measure of energy expenditure, when healthy subjects walk on 2 different tracks (20-m and 12-m figure eight tracks). DESIGN: Intra- and interrater reliability and construct validity. SETTING: Physiotherapy division of a university in London, UK. PARTICIPANTS: Forty healthy subjects (15 men, 25 women; mean age +/- standard deviation, 34.5+/-12.6 y). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Heart rate (in beats/min) and speed (in m/min) were used to calculate the PCI (in beats/m). Rate of oxygen consumption (VO2, in mL x kg(-1) x min(-1)) and oxygen cost (EO2, in mL x kg(-1) x m(-1)) were used as criterion estimates of energy cost EO2. Pearson correlation coefficients between the PCI, components of the PCI, EO2, and VO2 were used to quantify validity. Intrarater reliability was assessed in all participants and interrater reliability was assessed on a subset of 13 subjects using intraclass correlation coefficients and Bland-Altman plots. RESULTS: Intrarater (r=.73, r=.79) and interrater (r=.62, r=.66) reliability were acceptable between PCI scores from 20-m and 12-m tracks, respectively. Correlations between VO2 and EO2 with PCI were weak. PCI scores from the 20-m track were significantly lower than those on the 12-m track (P=.002). Subjects walked significantly faster on the 20-m track (P<.001). Results suggest a large difference in PCI scores would be necessary to indicate a "true" alteration in performance (52% for 20-m track, 43.4% for the 12-m track). CONCLUSIONS: The PCI is reliable but not valid as a measure of the energy cost of walking in healthy subjects, on either track. The 20-m track is recommended for clinical use because it enables subjects to walk at a faster pace.