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Table 1 Patient determined disease steps

From: A forgotten aspect of the NICE reference case: an observational study of the health related quality of life impact on caregivers of people with multiple sclerosis

0

Normal: The person that I care for may have some mild symptoms, mostly sensory due to MS but these do not limit his/her activity. If he/she does have an attack, he/she returns to normal when the attack has passed.

1

Mild Disability: The person that I care for has some noticeable symptoms from his/her MS but they are minor and have only a small effect on his/her lifestyle.

2

Moderate Disability: The person that I care for doesn’t have any limitations in his/her walking ability. However, he/she does have significant problems due to MS that limit daily activities in other ways.

3

Gait Disability: MS does interfere with his/her activities, especially his/her walking. He/she can work a full day, but athletic or physically demanding activities are more difficult than they used to be. He/she usually doesn’t need a cane or other assistance to walk, but he/she might need some assistance during an attack.

4

Early Cane: The person that I care for uses a cane or a single crutch or some other form of support (such as touching a wall or leaning on someone’s arm) for walking all the time or part of the time, especially when walking outside. I think he/she can walk 25 feet in 20 seconds without a cane or crutch. He/she always needs some assistance (cane or crutch) if he/she wants to walk as far as 3 blocks.

5

Late Cane: To be able to walk 25 feet, the person that I care for has to have a cane, crutch or someone to hold onto. He/she can get around the house or other buildings by holding onto furniture or touching the walls for support. He/she may use a scooter or wheelchair if he/she wants to go greater distances.

6

Bilateral Support: To be able to walk as far as 25 feet the person that I care for must have 2 canes or crutches or a walker. He/she may use a scooter or wheelchair for longer distances.

7

Wheelchair/Scooter: His/her main form of mobility is a wheelchair. He/she may be able to stand and/or take one or two steps, but he/she can’t walk 25 feet, even with crutches or a walker.

8

Bedridden: The person that I care for is unable to sit in a wheelchair for more than one hour.