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Inclusion Body Myositis-Functional Rating Scale (IBM-FRS)

1. Swallowing
- 4 Normal
- 3 Early eating problems-occasional choking
- 2 Dietary consistency changes
- 1 Frequent choking
- 0 Needs tube feeding

2. Handwriting (with dominant hand prior to IBM onset)
- 4 Normal
- 3 Slow or sloppy; all words are legible
- 2 Not all words are legible
- 1 Able to grip pen but unable to write
- 0 unable to grip pen

3. Cutting food and handling utensils
- 4 Normal
- 3 Somewhat slow and clumsy, but no help needed
- 2 Can cut most foods, although clumsy and slow; some help needed
- 1 Food must be cut by someone, but can still feed slowly
- 0 Needs to be fed

4. Fine motor tasks (opening doors, using keys, picking up small objects)
- 4 Independent
- 3 Slow or clumsy in completing task
- 2 Independent but requires modified techniques or assistive devices
- 1 Frequently requires assistance from caregiver
- 0 Unable

5. Dressing
- 4 Normal
- 3 Independent but with increased effort or decreased efficiency
- 2 Independent but requires assistive devices or modified techniques (Velcro snaps, shirts without buttons, etc)
- 1 Requires assistance from caregiver for some clothing items
- 0 total dependence

6. Hygiene (bathing and toileting)
- 4 Normal
- 3 Independent but with increased effort or decreased activity
- 2 Independent but requires use of assistive devices (shower chair, raised toilet seat, etc)
- 1 Requires occasional assistance from caregiver
- 0 Completely dependent

7. Turning in bed and adjusting covers
- 4 Normal
- 3 Somewhat slow and clumsy but no help needed
- 2 Can turn alone or adjust sheets, but with great difficulty
- 1 Can initiate, but not turn or adjust sheets alone
- 0 Unable or requires total assistance

8. Sit to stand
- 4 Independent (without use of arms)
- 3 Performs with substitute motions (leaning forward, rocking) but without use of arms
- 2 Requires use of arms
- 1 requires assistance from a device or person
- 0 Unable to stand

9. Walking
- 4 Normal
- 3 Slow or mild unsteadiness
- 2 Intermittent use of an assistive device (ankle-foot orthosis, cane, walker)
- 1 Dependent on assistive device
- 0 Wheelchair dependent

10. Climbing stairs
- 4 Normal
- 3 Slow with hesitation or increased effort; uses hand rail intermittently
- 2 Dependent on hand rail
- 1 Dependent on hand rail and additional support (cane or person)
- 0 Cannot climb stairs

The maximum score is 40, and the higher the score the better the functional status of the patient. The IBM-FRS addresses swallowing, handwriting, cutting food, handling utensils, dressing, hygiene, turning in bed, adjusting covers, sit to stand, walking and climbing stairs. The IBM-FRS correlates well with isometric strength and manual muscle testing, and we believe it should be utilised as an end point measurement in future IBM trials.

Source; Inclusion body myositis: old and new concepts
doi:10.1136/jnnp.2009.173823
J. Neurol. Neurosurg. Psychiatry 2009;80;1186-1193
A A Amato and R J Barohn

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