Empowered living: Tracking activity with neuromuscular disorders in a vibrant, green park

Move More, Live Better: How to Track Physical Activity with Neuromuscular Disorders

"A systematic review reveals the best ways to measure daily activity and improve quality of life for those with neuromuscular disorders."


Modern technology has revolutionized how we monitor daily life, providing detailed insights into activity levels. This data is invaluable, especially for those managing conditions that impact mobility. Neuromuscular disorders (NMDs), which cause muscle weakness and reduced functionality, significantly limit a person's ability to participate in daily activities. Understanding and improving physical activity (PA) in these individuals is crucial, but it requires careful selection of assessment methods.

Assessing free-living or habitual physical activity (HPA) is essential for understanding a person's real-world performance. Unlike clinical tests that measure capacity under ideal conditions, HPA reflects actual daily-life activities. By tracking HPA, clinicians and researchers can identify potential health risks, quantify outcomes, and develop effective interventions to improve quality of life for people with NMDs.

This article dives into a systematic review that analyzes various tools and methodologies used to assess HPA in NMD. By understanding the strengths and weaknesses of each approach, individuals with NMD, clinicians, and researchers can make informed decisions about how to best measure and improve daily activity.

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The Global Burden of Physical Inactivity

Physical inactivity is one of the leading risk factors for noncommunicable disease mortality worldwide, with people who are insufficiently active facing a 20% to 30% increased risk of death compared to those who are sufficiently active. Despite this, approximately 232.6 million Americans engage in some form of physical activity, suggesting a significant portion of the population remains underactive. Barriers such as lack of time and unsafe environments continue to limit activity levels across communities, though targeted program efforts have shown promise in reducing the associated costs of inactivity.

Standard Benchmarks and Their Shortcomings

Physical activity research has traditionally relied on standardized weekly benchmarks — 75, 150, and 300 minutes of moderate-to-vigorous activity — to classify activity levels and evaluate health outcomes. However, a growing body of evidence suggests that a 'one-size-fits-all' approach is inadequate, with researchers now advocating for tailored, personality-informed strategies to promote sustained activity. Studies also reveal uneven effectiveness across health outcomes: while physical activity can reduce the severity of depressive symptoms, it does not appear significantly effective at improving glycaemic control in adults with both type 2 diabetes and depressive symptoms. Earlier investigations into the link between physical activity and emotional well-being similarly faced significant methodological limitations, underscoring the need for more rigorous and standardized synthesis of existing data.

Physical Activity Measurement in Research Contexts

Standardized physical activity questionnaires, such as the Godin-Leyshon Thermometer Exercise Questionnaire (GLTEQ), have been employed as foundational tools in occupational health research to quantify activity levels among professional populations. A study of nurses found that the least physically active — those scoring 13 or less on the GLTEQ — reported significantly higher burnout scores, with 47.6% of high-burnout respondents falling into this low-activity category. This research, conducted among nurses who had directly cared for COVID-19 patients between 2020 and 2022, demonstrated that 90% of those with high burnout levels had been involved in frontline pandemic care, linking physical activity measurement to real-world workforce health outcomes.

Choosing the Right Tools: Direct vs. Indirect Measurement

Empowered living: Tracking activity with neuromuscular disorders in a vibrant, green park

Measuring HPA involves two primary approaches: direct and indirect methods. Indirect tools, such as questionnaires and activity diaries, rely on patient-reported outcomes (PROs). These are cost-effective and easy to administer in large studies. However, PROs are subjective and can be influenced by recall bias, requiring larger sample sizes to detect meaningful changes.

Direct methods, on the other hand, assess actual physiological changes. These include heart rate monitors, motion sensors (like pedometers and accelerometers), and doubly labeled water, a gold standard for measuring energy expenditure. Direct tools provide more objective and accurate data but are typically more expensive, time-consuming, and can place a higher burden on both the researcher and participant.

The key differences:
  • Indirect methods rely on self-reporting, are cost-effective, but subjective.
  • Direct methods are objective but more expensive and time-consuming.
  • PRO’s Subjective, prone to bias.
  • Accuracy and feasibility is paramount.
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Redefining Physical Activity in Chronic Illness

Recent research emphasizes that the language used to discuss physical activity in the context of chronic illness matters significantly for patient engagement and outcomes. Experts stress that physical activity does not necessarily mean intense exercise — a walk, taking the stairs, or a short bike ride can also make a meaningful difference for those managing chronic conditions. An mHealth intervention study published in the Journal of Medical Internet Research in 2026 further contributes to this evidence base, examining how digital tools can support physical activity adoption alongside mental health outcomes. Together, these findings point toward a more accessible and patient-centered framing of physical activity in clinical and self-management contexts.

Measurement Challenges and Disparities

Research on the causal influence of neighborhood design on physical activity has identified critical methodological limitations, including reliance on self-report measures that may not accurately capture actual activity behavior. Both cross-sectional and quasi-longitudinal analyses provided evidence of a causal impact, yet the self-report limitation weakens the strength of conclusions that can be drawn. Data from Statistics Canada further complicates the picture, showing that chronic health problems were generally more prevalent among women than men who had activity limitations, though heart disease and diabetes were slightly more common among men with activity limitations. These findings highlight that the relationship between physical activity, health outcomes, and measurement validity remains unevenly understood across populations.

Outdoor vs. Indoor Exercise Environments

A systematic review comparing outdoor and indoor exercise found meaningful differences in psychological health, physical health, and physical activity behavior between the two environments. Complementing this, a 2025 study using a crossover design found that outdoor physical activity led to greater improvements in executive function, working memory, and attention among pupils aged 11 to 13 compared to identical activity performed indoors. These findings suggest that the setting in which physical activity takes place may be as important as the activity itself, with outdoor environments offering cognitive benefits that indoor settings do not fully replicate.

While doubly labeled water is the gold standard for validating energy expenditure estimations, observation remains the standard for validating the type of activity. Currently, there is no universally accepted gold standard tool for assessing HPA in NMD, making the selection process complex. The adaptation of these tools into clinical practice needs more research to confirm validity and reliability in the specific population being studied.

Moving Forward: A Checklist for Success

Measuring HPA effectively offers many advantages, enabling clinicians to identify subtle changes and daily limitations that standard clinical measures might miss. To ensure high-quality data, it's essential to consider several key concepts: reliability, validity, responsiveness, feasibility, and acceptability. By carefully selecting the appropriate tools and methodologies, researchers and clinicians can unlock valuable insights into the lives of individuals with NMD and pave the way for targeted interventions that promote better health and well-being.

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Tailoring Activity to the Individual

Experts emphasize that how we talk about physical activity shapes engagement, particularly for people managing chronic illness. Physical activity does not necessarily mean intense exercise — walks, taking the stairs, or short bike rides are all meaningful forms of movement that can support health. Research on rural children has further shown that individuals cluster into distinct physical activity profiles with measurable psychological differences, reinforcing the need to tailor interventions to different types of people rather than applying universal recommendations. Together, these perspectives argue for communication strategies and program designs that meet people where they are.

Global Trends in Insufficient Physical Activity

A comprehensive Lancet study documented worldwide trends in insufficient physical activity from 2001 to 2016, providing a baseline for understanding how global activity levels have shifted over time. This longitudinal perspective is critical for identifying populations at greatest risk and evaluating whether public health interventions are moving the needle at scale. As the global burden of physical inactivity persists, these trend data will inform future policy priorities and research agendas aimed at reversing decades of declining movement.

Physical Activity as Public Policy

Physical activity advocates argue that movement should be treated as a healthy public policy priority, with implications for systemic healthcare reform that positions physical activity as an important component of value-based care. Research on outdoor physical activity among young people further supports this framing, demonstrating that activity performed outdoors is more beneficial for cognition than the same activity done indoors. These findings strengthen the case for policy environments that prioritize accessible outdoor spaces and integrate physical activity promotion into broader public health infrastructure.

Physical Activity's Impact on Performance and Biology

A meta-analysis of school-based physical activity found that it positively affects children's attention and math performance, with results suggesting that factors such as activity type and duration influence the magnitude of academic benefits. In a related biological finding, researchers discovered that a few minutes of sprinting could produce a bigger impact than 90 minutes of moderate exercise, with human fat cells exposed to post-sprint blood undergoing extensive changes in gene activity — shifting how cells process fuel, respond to hormones, and sense nutrient availability. These findings collectively illustrate that physical activity's benefits extend well beyond general fitness, affecting cognition at the population level and cellular function at the molecular level.

About this Article -

Written with AI assistance from published research, and reviewed by the Mystum team. See our About page for more information.

This article is based on research published under:

DOI-LINK: 10.3233/jnd-160195, Alternate LINK

Title: Measuring Habitual Physical Activity In Neuromuscular Disorders: A Systematic Review

Subject: Neurology (clinical)

Journal: Journal of Neuromuscular Diseases

Publisher: IOS Press

Authors: Aura Cecilia Jimenez-Moreno, Jane Newman, Sarah J. Charman, Michael Catt, Michael I. Trenell, Grainne S. Gorman, Jean-Yves Hogrel, Hanns Lochmüller

Published: 2017-02-28

Everything You Need To Know

1

Why is it important to assess Habitual Physical Activity (HPA) in individuals with Neuromuscular Disorders (NMDs)?

Habitual Physical Activity (HPA) is crucial because it reflects a person's real-world performance in daily life, unlike clinical tests that measure capacity under ideal conditions. By tracking HPA, healthcare providers can identify potential health risks, quantify outcomes, and develop effective interventions to improve the quality of life for individuals with Neuromuscular Disorders (NMDs). While clinical tests are important, they may not fully capture the challenges and limitations individuals face in their everyday routines.

2

What are the key differences between direct and indirect methods for measuring Habitual Physical Activity (HPA), and what are the tradeoffs of each?

Direct methods, such as heart rate monitors, motion sensors (like pedometers and accelerometers), and doubly labeled water, offer more objective and accurate data by assessing actual physiological changes. However, these methods are typically more expensive, time-consuming, and can place a higher burden on both the researcher and participant. Indirect methods, like questionnaires and activity diaries, rely on patient-reported outcomes (PROs) and are more cost-effective and easier to administer but can be subjective and influenced by recall bias. The choice depends on balancing accuracy needs with practical constraints.

3

What are the limitations of relying solely on patient-reported outcomes (PROs) when assessing physical activity levels?

Patient-reported outcomes (PROs), such as those gathered from questionnaires and activity diaries, are subjective and can be influenced by recall bias. This means that individuals may not accurately remember or report their physical activity levels, leading to potential inaccuracies in the data. While PROs are cost-effective and easy to administer, it's important to be aware of their limitations and consider using them in conjunction with more objective measures to validate the findings. Larger sample sizes can help mitigate some of the bias inherent in PROs.

4

Is there a gold standard tool for assessing Habitual Physical Activity (HPA) in individuals with Neuromuscular Disorders (NMDs), and if not, what factors should be considered when selecting assessment tools?

There is currently no universally accepted gold standard tool for assessing Habitual Physical Activity (HPA) in individuals with Neuromuscular Disorders (NMDs). While doubly labeled water is considered the gold standard for validating energy expenditure estimations, observation remains the standard for validating the type of activity. The selection of appropriate tools is complex and requires careful consideration of factors such as reliability, validity, responsiveness, feasibility, and acceptability in the specific population being studied. More research is needed to confirm the validity and reliability of existing tools in clinical practice for NMD.

5

What key concepts should be considered to ensure high-quality data when measuring Habitual Physical Activity (HPA), and how do these concepts contribute to better health outcomes?

To ensure high-quality data when measuring Habitual Physical Activity (HPA), it's essential to consider key concepts such as reliability, validity, responsiveness, feasibility, and acceptability. Reliability refers to the consistency of the measurement tool, while validity ensures that the tool accurately measures what it's intended to measure. Responsiveness indicates the tool's ability to detect meaningful changes over time. Feasibility considers the practicality and ease of use of the tool, and acceptability refers to how well the tool is received by the individuals being assessed. By carefully considering these factors, clinicians and researchers can gather valuable insights into the lives of individuals with Neuromuscular Disorders (NMDs) and develop targeted interventions to promote better health and well-being.

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