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

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

Jordan Keane in Health & Wellness November 2025 • 4 min read.

"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.

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.

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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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

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.

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.

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.

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.

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.