Motor function

Every registry must collect the motor function status with respect to each of the following abilities. These items are intended to be feasible for all registries (both clinician and patient-reported) to collect.

  • Hold head up without support: Able to support weight of own head without assistance or resting head against an object.
  • Roll onto side: From a supine position, able to roll onto (either left or right) side without assistance.
  • Sit without support (WHO): Sits up straight with the head erect for at least 10 seconds. Does not use arms or hands to balance body or support position.
  • Crawl on hands and knees (WHO): Alternately moves forward or backward on hands and knees. The stomach does not touch the supporting surface. There are continuous and consecutive movements, at least three in a row.
  • Stand with assistance (WHO): Stands in upright position on both feet, holding onto a stable object (e.g. furniture) with both hands without leaning on it. The body does not touch the stable object, and the legs support most of the body weight. Thus stands with assistance for at least 10 seconds.
  • Stand without assistance (WHO): Stands in upright position on both feet (not on the toes) with the back straight. The legs support 100% of the body weight. There is no contact with a person or object. Stands alone for at least 10 seconds.
  • Walk with assistance (WHO): Upright position with the back straight. Makes sideways or forward steps by holding onto a stable object (e.g. furniture) with one or both hands. One leg moves forward while the other supports part of the body weight. Takes at least 5 steps in this manner.
  • Walk without assistance (WHO): Takes at least 5 steps independently in upright position with the back straight. One leg moves forward while the other supports most of the body weight. There is no contact with a person or object.
  • Walk 10 metres without assistance: As “Walk without assistance”, but walks in this manner for at least 10 meters.
  • Climb stairs: Climbs at least 4 stairs independently. Contact with a railing is permitted but there is no additional help from a person or other object.
  • Useful function of hands (RULM): Can use hands to hold pencil or pick up a token or drive a powered chair, use phone key pad. Corresponds to a score of 1 of the RULM entry item.
  • Reach overhead in a sitting position (RULM): Can raise both arms simultaneously above head whilst in a sitting position. Corresponds to a score of 5 or 6 on the RULM entry item.
  • Raise hands to mouth in a sitting position (RULM): Can raise one or two hands to mouth whilst in a sitting position. Corresponds to a score of 2 on the RULM entry item.

Abilities marked with “WHO” are taken from the WHO Motor Milestones; those marked with “RULM” are contained in the Revised Upper Limb Module.

For each ability, the present and past status of the individual must be collected. Since the type of information to be collected is the same for each ability, this group contains only two records. For every individual, at least one instance of each record must be provided for each of the abilities.

Record

Motor ability CR  PR  longitudinal     

The datestamp of this record must be the date to which the value of Motor ability status refers. This may generally be assumed to be the entry date for patient-reported registries, or the date of the clinical examination for clinician-reported registries.

Related items in previous version: 7.00, 7.01, 7.02, 7.03, 7.04, 7.05, 7.06, 7.07, 7.08, 7.09, 7.10, 7.11, 7.12
Motor ability CR  PR 
Item type: single selection
Usage in other datasets: DMDLGMD
Value ID Description
Hold head without support

Hold head up without support

Roll onto side

Roll onto side

Sit without support

Sit without support

Crawl

Crawl on hands and knees

Stand with assistance

Stand with assistance

Stand without assistance

Stand without assistance

Walk with assistance

Walk with assistance

Walk without assistance

Walk without assistance

Walk 10 metres without assistance

Walk 10 metres without assistance

Climb stairs

Climb stairs

Useful function of hands

Useful function of hands

Reach overhead in a sitting position

Reach overhead in a sitting position

Raise hands to mouth in a sitting position

Raise hands to mouth in a sitting position

Motor ability status CR  PR 

Specifies whether the individual currently has or previously had the ability specified in Motor ability.

If the value is Currently, Previously, or Sometime, one or more instances of the record Motor ability episode should be provided to specify details.

Item type: single selection
Value ID Description
Currently

This is currently the case

Previously

This has previously been the case, but is not currently

Never

This has never been the case, neither previously nor currently

Sometime

This has been the case at some time, but it is unknown whether it is currently the case

Not currently

This is currently not the case, but it is unknown whether it has previously been the case

Motor ability observed in clinic CR  PR 

Specifies whether the assessment given in Motor ability status was made by a healthcare professional. For patient-reported registries, this item may implicitly be assumed to always have the value No.

Item type: yes/no
Record

Motor ability episode CR  PR    episode   

It is assumed that the episodes will always be provided by the individual or caregiver, either directly (in patient-reported or dual-reported registries) or reported to a clinician (in clinician-reported registries). To collect observations made by a clinician, use the record Motor ability with a value of Yes for the item Motor ability observed in clinic.

The start and stop dates of this episode may also be collected by asking for the age (for instance with separate fields for years and months). The ages must be converted into (partial) dates when the values of Start date and Stop date are required.

Related items in previous version: 7.00, 7.01, 7.02, 7.03, 7.04, 7.05, 7.06, 7.07, 7.08, 7.09, 7.10, 7.11, 7.12
Motor ability episode CR  PR 

Motor ability this episode refers to.

Item type: single selection
Value ID Description
Hold head without support

Hold head up without support

Roll onto side

Roll onto side

Sit without support

Sit without support

Crawl

Crawl on hands and knees

Stand with assistance

Stand with assistance

Transfer

Transfer from bed to chair

Stand without assistance

Stand without assistance

Get up from chair

Get up from chair

Rise from floor

Rise from floor without assistance

Walk with assistance

Walk with assistance

Walk without assistance

Walk without assistance

Walk 10 metres without assistance

Walk 10 metres without assistance

Climb stairs

Climb stairs

Run

Run

Useful function of hands

Useful function of hands

Reach overhead in a sitting position

Reach overhead in a sitting position

Raise hands to mouth in a sitting position

Raise hands to mouth in a sitting position