We looked at the evidence on ways to increase physical activity in people with neuromuscular disease. We only included studies that measured physical activity as an outcome. We collected and analysed all relevant studies to answer this question.
Physical activity includes any type of everyday activity, such as work, travel, or exercise. Based on well-known health benefits, international guidance recommends that everyone does enough regular physical activity. This guidance is relevant to people with health conditions, including neuromuscular diseases, which affect the way that muscles and nerves work. However, many people with neuromuscular disease live with disability and face barriers to being more physically active. Research studies also sometimes exclude people who have health conditions.
This review included 13 studies (795 participants from 12 studies; the number of participants was unclear in one study). The studies mostly involved adults who were able to walk, although our review question included people of any age who were able to move around with or without assistance. Only one study intervention had a stated aim to increase physical activity. The main focus of most studies was to assess the effects of physical activity interventions on other aspects of health, fitness, and well-being. Interventions involved supported exercise or other types of physical activity, advice about being more active, or talking therapies that included changing everyday activity behaviour. Physical therapists and other health and fitness professionals provided the support for most interventions.
Results and certainty of the evidence
The evidence related to adults with nine different types of neuromuscular disease. All 13 studies planned to measure physical activity but the results from six studies were not reported or usable. We found important differences in the interventions and in the usual care provided in different places. We also found differences in how studies measured and reported outcomes. Missing information on physical activity may have affected the results. In terms of time spent physically active, we are uncertain whether any intervention promoted physical activity in people with neuromuscular disease. We are also uncertain about the impact of physical activity interventions on quality of life and any harms. However, we found no evidence that physical activity intervention increased serious harms. Our uncertainty in the evidence is due to limitations in study design and because the results were imprecise or did not directly address our review question.
The evidence is current to 30 April 2020.
We found a lack of evidence relating to children, adolescents, and non-ambulant people of any age. Many people living with NMD did not meet randomised controlled trial eligibility criteria. There was variation in the components of supported activity intervention and usual care, such as physical therapy provision. We identified variation among studies in how physical activity was monitored, analysed, and reported. We remain uncertain of the effectiveness of promotional intervention for physical activity and its impact on quality of life and adverse events. More information is needed on the ITT population, as well as more complete reporting of outcomes. While there may be no single objective measure of physical activity, the study of qualitative and dichotomous change in self-reported overall physical activity might offer a pragmatic approach to capturing important change at an individual and population level.
The World Health Organization (WHO) recommends that people of all ages take regular and adequate physical activity. If unable to meet the recommendations due to health conditions, international guidance advises being as physically active as possible. Evidence from community interventions of physical activity indicate that people living with medical conditions are sometimes excluded from participation in studies. In this review, we considered the effects of activity-promoting interventions on physical activity and well-being in studies, as well as any adverse events experienced by participants living with inherited or acquired neuromuscular diseases (NMDs).
To assess the effects of interventions designed to promote physical activity in people with NMD compared with no intervention or alternative interventions.
On 30 April 2020, we searched Cochrane Neuromuscular Specialised Register, CENTRAL, Embase, MEDLINE, and ClinicalTrials.Gov. WHO ICTRP was not accessible at the time.
We considered randomised or quasi-randomised trials, including cross-over trials, of interventions designed to promote physical activity in people with NMD compared to no intervention or alternative interventions. We specifically included studies that reported physical activity as an outcome measure. Our main focus was studies in which promoting physical activity was a stated aim but we also included studies in which physical activity was assessed as a secondary or exploratory outcome.
We used standard Cochrane procedures.
The review included 13 studies (795 randomised participants from 12 studies; number of participants unclear in one study) of different interventions to promote physical activity. Most studies randomised a minority of invited participants. No study involved children or adolescents and nine studies reported minimal entry criteria for walking. Participants had one of nine inherited or acquired NMDs.
Types of intervention included structured physical activity support, exercise support (as a specific form of physical activity), and behaviour change support that included physical activity or exercise. Only one included study clearly reported that the aim of intervention was to increase physical activity. Other studies reported or planned to analyse the effects of intervention on physical activity as a secondary or exploratory outcome measure. Six studies did not report results for physical activity outcomes, or the data were not usable. We judged 10 of the 13 included studies at high or unclear risk of bias from incomplete physical activity outcome reporting.
We did not perform a meta-analysis for any comparison because of differences in interventions and in usual care. We also found considerable variation in how studies reported physical activity as an outcome measure. The studies that reported physical activity measurement did not always clearly report intention-to-treat (ITT) analysis or whether final assessments occurred during or after intervention. Based on prespecified measures, we included three comparisons in our summary of findings.
A physical activity programme (weight-bearing) compared to no physical activity programme
One study involved adults with diabetic peripheral neuropathy (DPN) and reported weekly duration of walking during and at the end of a one-year intervention using a StepWatch ankle accelerometer. Based on the point estimate and low-certainty evidence, intervention may have led to an important increase in physical activity per week; however, the 95% confidence interval (CI) included the possibility of no difference or an effect in either direction at three months (mean difference (MD) 34 minutes per week, 95% CI –92.19 to 160.19; 69 participants), six months (MD 68 minutes per week, 95% CI –55.35 to 191.35; 74 participants), and 12 months (MD 49 minutes per week, 95% CI –75.73 to 173.73; 70 participants). Study-reported effect estimates for foot lesions and full-thickness ulcers also included the possibility of no difference, a higher, or lower risk with intervention.
A sensor-based, interactive exercise programme compared to no sensor-based, interactive exercise programme
One study involved adults with DPN and reported duration of walking over 48 hours at the end of four weeks' intervention using a t-shirt embedded PAMSys sensor. It was not possible to draw conclusions about the effectiveness of the intervention from the very low-certainty evidence (MD –0.64 hours per 48 hours, 95% CI –2.42 to 1.13; 25 participants). We were also unable to draw conclusions about impact on the Physical Component Score (PCS) for quality of life (MD 0.24 points, 95% CI –5.98 to 6.46; 35 participants; very low-certainty evidence), although intervention may have made little or no difference to the Mental Component Score (MCS) for quality of life (MD 5.10 points, 95% CI –0.58 to 10.78; 35 participants; low-certainty evidence).
A functional exercise programme compared to a stretching exercise programme
One study involved adults with spinal and bulbar muscular atrophy and reported a daily physical activity count at the end of 12 weeks' intervention using an Actical accelerometer. It was not possible to draw conclusions about the effectiveness of either intervention (requiring compliance) due to low-certainty evidence and unconfirmed measurement units (MD –8701, 95% CI –38,293.30 to 20,891.30; 43 participants). Functional exercise may have made little or no difference to quality of life compared to stretching (PCS: MD –1.10 points, 95% CI –5.22 to 3.02; MCS: MD –1.10 points, 95% CI –6.79 to 4.59; 49 participants; low-certainty evidence).
Although studies reported adverse events incompletely, we found no evidence of supported activity increasing the risk of serious adverse events.