Many of the assessments, observations, and measurements that we conduct in the clinic setting or in the home environment, we do in order to guide our management and to evaluate the effectiveness of a particular intervention. Assessment can capture change and disease progression and this is certainly one reason we use standardised assessments. Most patients know they are getting weaker so are looking for our help and solutions to maintain independence and function.
Motor Performance Scales
This is not an exhaustive list of measures of motor performance, rather a focus on the common motor performance scales most useful to clinicians working with NMD. The information outlined for each scale is designed to be a clinical guide rather than an academic summary however links to further materials and information are included.
Patient Reported Outcome Measures (PROMS)
The importance of PROMS to the evaluation of subjects with NMD is becoming clearer and certainly more measures are in existence. This has been largely driven by need and the advent of numerous clinical trials. In clinic, they allow you to document how a subject manages at home in terms of activities of daily living or independence. Their use is not however limited to activities of daily living (ADL) but can be used to capture quality of life, fatigue, pain, sleep, and participation. In this section we present a few key PROMS used in NMD but the list is not exhaustive.
Timed tests are a useful way to document change. The observation of quality and a subject’s approach to the test is important to take into consideration alongside the time it takes. For example, a subject with Pompe may exhibit a lot of pelvic sway and be quite nervous of performing a 10-metre walk / run test, as they must concentrate on where they place their feet. These observations are as important to you as a clinician, as the time taken to complete the test.
A timed test can be used to evaluate some physiotherapy interventions. Could your intervention improve the speed at which a subject walks, by providing support / improve ankle dorsiflexion (orthotic), or is the time more representative of fear and could a walking aid improve confidence, or is it time to consider a wheelchair?
Patients with NMD may experience other associated symptoms such as pain, respiratory issues and fatigue.
This section aims to assist clinicians in performing these assessments and capture this vital information to provide a more patient-centred and multi-disciplinary approach to their care.
Assessing Babies and Young Children
If you are fortunate enough to be involved in the assessment of babies and young children, it is important that you have a good understanding of normal development first. This involves observation of posture, movement, and assessment of muscle tone. In this section we point you to some helpful resources and motor development scales.
Summary of Function Scales
Several scales exist which allow a clinician to summarise the current functional ability of a subject. They lack granularity and will not be sensitive enough to pick up small changes but can be a useful and rapid way to document current abilities in a clinical setting or if necessary, used as a patient reported summary.