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. 2021 May 24;5(5):CD013544.
doi: 10.1002/14651858.CD013544.pub2.

Interventions for promoting physical activity in people with neuromuscular disease

Katherine Jones  1   2 , Fiona Hawke  3 , Jane Newman  4 , James Al Miller  5 , Joshua Burns  6 , Djordje G Jakovljevic  7 , Grainne Gorman  8 , Douglass M Turnbull  9 , Gita Ramdharry  10
Affiliations

Interventions for promoting physical activity in people with neuromuscular disease

Katherine Jones et al. Cochrane Database Syst Rev. .

Abstract

Background: 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). OBJECTIVES: To assess the effects of interventions designed to promote physical activity in people with NMD compared with no intervention or alternative interventions.

Search methods: On 30 April 2020, we searched Cochrane Neuromuscular Specialised Register, CENTRAL, Embase, MEDLINE, and ClinicalTrials.Gov. WHO ICTRP was not accessible at the time.

Selection criteria: 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.

Data collection and analysis: We used standard Cochrane procedures.

Main results: 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.

Authors' conclusions: 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.

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Conflict of interest statement

KJ: employed as a Research Physiotherapist during 2015 to 2016 for one of the included studies (Wallace 2019). She is currently the NIHR Network Support Fellow for the Cochrane Acute and Emergency Care Network, and previously for the Cochrane Mental Health and Neuroscience Network (2019 to 2021).

FH: none. She is a podiatrist and member of the Australian Podiatry Association.

JN: none. She was involved in Okkersen 2018. This study was funded by the European Union Seventh Framework Program, under grant agreement number 305697 (the Observational Prolonged Trial In Myotonic dystrophy type 1 to Improve quality of life Standards, a Target Identification Collaboration (OPTIMISTIC) project).

JM: none.

JB: receives research funding from NIH (National Institute of Neurological Diseases and Stroke and National Center for Advancing Translational Sciences, Inherited Neuropathies Consortium, Rare Disease Clinical Research Network #2U54NS065712), Charcot‐Marie Tooth Association of Australia, Charcot‐Marie Tooth Association (USA), Diabetes Australia, Multiple Sclerosis Research Australia, Sydney Southeast Asia Centre, New Zealand Neuromuscular Research Foundation Trust, Elizabeth Lottie May Rosenthal Bone Bequest and Perpetual Limited. Consultancies: Acceleron Pharma (September 2016). He is a registered podiatrist working at The Children's Hospital at Westmead, Australia.

DGJ: none.

GG: none.

DMT: our work was supported by The Wellcome Trust Centre for Mitochondrial Research (906919), the Newcastle University Centre for Brain Ageing and Vitality supported by Biotechnology and Biological Sciences Research Council, Engineering and Physical Sciences Research Council, Economic and Social Research Council, and Medical Research Council as part of the cross‐council Lifelong Health and Wellbeing Initiative (G0700718). Consultancies: Imel Therapeutics and Nanna Therapeutics. Scientific Advisory board memberships: Pretzel Therapeutics and Khondrion.

GR: was principal investigator in Wallace 2019, supported by the National Institute for Health Research (NIHR Research for Patient Benefit funding stream, Grant reference PB‐PG 0711‐25151) and University College London Hospitals Biomedical Research Centre. CSL Behring organised and funded her travel and accommodation at the Peripheral Nerve Society meeting in Baltimore 2018. She has published an opinion piece on targeting the sedentary behaviour epidemic in neurological disease. She is a Consultant Allied Health Professional working with people with neuromuscular disease and a committee member of the British Myology Society (unpaid).

Figures

1
1
Flow diagram. RCT: randomised controlled trial.
2
2
Risk of bias summary: review authors' judgements about each risk of bias item for each included study.
1.1
1.1. Analysis
Comparison 1: A physical activity (PA) programme (weight‐bearing) compared no PA programme in people living with NMD, Outcome 1: Time spent walking (minutes per week, activity monitor)
1.2
1.2. Analysis
Comparison 1: A physical activity (PA) programme (weight‐bearing) compared no PA programme in people living with NMD, Outcome 2: Daily steps (count, activity monitor)
1.3
1.3. Analysis
Comparison 1: A physical activity (PA) programme (weight‐bearing) compared no PA programme in people living with NMD, Outcome 3: Steps taken in 30‐minute bouts (count, activity monitor)
2.1
2.1. Analysis
Comparison 2: A weight‐bearing (WB) exercise programme compared to a non‐WB exercise programme in people living with NMD, Outcome 1: Daily steps (count, activity monitor)
3.1
3.1. Analysis
Comparison 3: A sensor‐based, interactive exercise programme compared to no sensor‐based, interactive exercise programme in people living with NMD, Outcome 1: Time spent walking (hours per 48 hours, activity monitor)
3.2
3.2. Analysis
Comparison 3: A sensor‐based, interactive exercise programme compared to no sensor‐based, interactive exercise programme in people living with NMD, Outcome 2: Daily steps (count, activity monitor)
3.3
3.3. Analysis
Comparison 3: A sensor‐based, interactive exercise programme compared to no sensor‐based, interactive exercise programme in people living with NMD, Outcome 3: Quality of life (Physical Component Score, questionnaire)
3.4
3.4. Analysis
Comparison 3: A sensor‐based, interactive exercise programme compared to no sensor‐based, interactive exercise programme in people living with NMD, Outcome 4: Quality of life (Mental Component Score, questionnaire)
4.1
4.1. Analysis
Comparison 4: An aerobic exercise programme compared to no aerobic exercise programme in people living with NMD, Outcome 1: Daily steps (count, activity monitor)
4.2
4.2. Analysis
Comparison 4: An aerobic exercise programme compared to no aerobic exercise programme in people living with NMD, Outcome 2: Disease‐specific quality of life (ALSAQ‐40, questionnaire)
4.3
4.3. Analysis
Comparison 4: An aerobic exercise programme compared to no aerobic exercise programme in people living with NMD, Outcome 3: Quality of life (SF‐36 Physical Component Score, questionnaire)
4.4
4.4. Analysis
Comparison 4: An aerobic exercise programme compared to no aerobic exercise programme in people living with NMD, Outcome 4: Quality of life (SF‐36 Mental Component Score, questionnaire)
4.5
4.5. Analysis
Comparison 4: An aerobic exercise programme compared to no aerobic exercise programme in people living with NMD, Outcome 5: Quality of life (SF‐36 Physical Component Score, questionnaire)
4.6
4.6. Analysis
Comparison 4: An aerobic exercise programme compared to no aerobic exercise programme in people living with NMD, Outcome 6: Quality of life (SF‐36 Mental Component Score, questionnaire)
5.1
5.1. Analysis
Comparison 5: An aerobic exercise training programme compared to cognitive behavioural therapy (CBT) in people living with NMD, Outcome 1: Daily steps (count, activity monitor)
5.2
5.2. Analysis
Comparison 5: An aerobic exercise training programme compared to cognitive behavioural therapy (CBT) in people living with NMD, Outcome 2: Quality of life (SF‐36 Physical Component Score, questionnaire)
5.3
5.3. Analysis
Comparison 5: An aerobic exercise training programme compared to cognitive behavioural therapy (CBT) in people living with NMD, Outcome 3: Quality of life (SF‐36 Mental Component Score, questionnaire)
6.1
6.1. Analysis
Comparison 6: Cognitive behavioural therapy (CBT) compared to no CBT in people living with NMD, Outcome 1: Daily steps (count, activity monitor)
6.2
6.2. Analysis
Comparison 6: Cognitive behavioural therapy (CBT) compared to no CBT in people living with NMD, Outcome 2: Quality of life (SF‐36 Physical Component Score, questionnaire)
6.3
6.3. Analysis
Comparison 6: Cognitive behavioural therapy (CBT) compared to no CBT in people living with NMD, Outcome 3: Quality of life (SF‐36 Mental Component Score, questionnaire)
7.1
7.1. Analysis
Comparison 7: Cognitive behavioural therapy (CBT) with/without an exercise programme compared to no CBT and no exercise programme in people living with NMD, Outcome 1: Physical activity (unclear units – interpreted as mean magnitude of ankle acceleration over 24 hours, activity monitor with Euclidian Norm Minus One metric)
7.2
7.2. Analysis
Comparison 7: Cognitive behavioural therapy (CBT) with/without an exercise programme compared to no CBT and no exercise programme in people living with NMD, Outcome 2: Physical activity (unclear units – interpreted as mean magnitude of ankle acceleration over 5 hours of highest activity, activity monitor with Euclidian Norm Minus One metric)
7.3
7.3. Analysis
Comparison 7: Cognitive behavioural therapy (CBT) with/without an exercise programme compared to no CBT and no exercise programme in people living with NMD, Outcome 3: Physical activity (unclear units – interpreted as mean magnitude of ankle acceleration over 5 hours of lowest activity, activity monitor with Euclidian Norm Minus One metric)
7.4
7.4. Analysis
Comparison 7: Cognitive behavioural therapy (CBT) with/without an exercise programme compared to no CBT and no exercise programme in people living with NMD, Outcome 4: NMD‐specific quality of life (INQoL)
7.5
7.5. Analysis
Comparison 7: Cognitive behavioural therapy (CBT) with/without an exercise programme compared to no CBT and no exercise programme in people living with NMD, Outcome 5: Adverse events
7.6
7.6. Analysis
Comparison 7: Cognitive behavioural therapy (CBT) with/without an exercise programme compared to no CBT and no exercise programme in people living with NMD, Outcome 6: Serious adverse events
8.1
8.1. Analysis
Comparison 8: A functional exercise programme compared to a stretching exercise programme in people living with NMD, Outcome 1: Physical activity (unspecified count per day, activity monitor)
8.2
8.2. Analysis
Comparison 8: A functional exercise programme compared to a stretching exercise programme in people living with NMD, Outcome 2: Quality of life (SF‐36 Physical Component Score, questionnaire)
8.3
8.3. Analysis
Comparison 8: A functional exercise programme compared to a stretching exercise programme in people living with NMD, Outcome 3: Quality of life (SF‐36 Mental Component Score, questionnaire)
8.4
8.4. Analysis
Comparison 8: A functional exercise programme compared to a stretching exercise programme in people living with NMD, Outcome 4: Quality of life (SF‐36 Vitality Component Score, questionnaire)
See this image and copyright information in PMC

Update of

References

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References to studies excluded from this review

Adams 2019 {published data only}
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Alemdaroglu 2015 {published data only}
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Bauer 2018 {published data only}
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References to studies awaiting assessment

ChiCTR‐IPR‐15006127 {published data only}
    1. ChiCTR-IPR-15006127. Effect of peer support on physical activity of patients with diabetic peripheral neuropathy. www.chictr.org.cn/hvshowproject.aspx?id=11741 (first received 22 March 2015).
NCT00866112 {published data only}
    1. NCT00866112. A randomized exercise trial for wheelchair users. clinicaltrials.gov/show/NCT00866112 (first received 20 March 2009).

References to ongoing studies

ACTRN12617000543381 {published data only}
    1. ACTRN12617000543381. Do different shoe insole surfaces affect balance and walking in adults with diabetes and foot nerve damage? www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=372682 (first received 18 April 2017).
NCT02089880 {published data only}
    1. NCT02089880. Comparing functional outcomes in individuals using micro-processor controlled orthosis versus stance control orthosis. clinicaltrials.gov/show/NCT02089880 (first received 18 March 2014).
NCT02790931 {published data only}
    1. NCT02790931. Effects of foot muscle strengthening in daily activity in diabetic neuropathic patients. clinicaltrials.gov/ct2/show/NCT02790931 (first received 6 June 2016).
NCT03515356 {published data only}
    1. NCT03515356. Exercise to reduce chemotherapy-induced peripheral neuropathy. clinicaltrials.gov/show/NCT03515356 (first received 3 May 2018).
NCT03531788 {published data only}
    1. NCT03531788. Use of dynamic arm supports to promote activities of daily living in individuals with DMD. clinicaltrials.gov/show/NCT03531788 (first received 22 May 2018).

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