Performance of Upper Limb (PUL 2.0)
Measurement framework:
Clinician reported outcome. Designed to capture motor performance of the upper limb in DMD. Developed by clinicians and patient and family groups. 22-item scale that grades performance of various functional skills on a scale from 0 (unable), 1 (completes independently but with modifications), and 2 (completed without compensation). Total score 0 – 42 with a higher score denoting a higher level of function. Entry item not included in total score. Items designed to reflect many activities of daily living.
ICF Domain:
Activity
Suitable for:
DMD. Also used in BMD, LGMD and may be suitable for use in other NMD.
Level of function:
Subjects where upper limb performance is impacted. Suitable for strong and very weak subjects but will have a ceiling in the strongest subjects.
Clinical application:
Suitable for subjects where there is a suspicion that upper limb function is being impacted. The Entry item and the proximal items can be used to screen for difficulties and the remaining sections, (Elbow / mid-level and distal items) can be completed if necessary. Some of the “easier” items may be impacted by contractures more than strength (supination) so these may be worth measuring as well.
Publication from 2025 on Meaningful change on NSAA and PUL in DMD
Training / training material
Training advised to ensure accurate delivery of the scale. Need a specific kit to conduct this reliably. A list of this kit is in the manual. Conducting the test accurately requires a height adjustable table. Manual and worksheets are available as well as comprehensive audio guided training slides.
