2 Survey-Excel

Quality of Life Outcomes in Neurological Disorders (NINDS)

APPENDIX 2 NEURO-QOL OMB.xls

Neuro-QOL Form

OMB: 0925-0592

Document [xlsx]
Download: xlsx | pdf

Overview

FORM A_ROLE PERF (n=49)
FORM A_ROLE SAT (n=51)
FORM B_ASSIST DEV (n=13)
FORM B_PF SCREEN (n=1)
FORM B_MOBILITY (n=37)
FORM B_UPPER EXT (n=44)
FORM C_PPF (n=27)
FORM C_DEP (n=31)
FORM C_ANX (n=28)
FORM D_COG (n=88)
FORM E_Emotional Distress N=46
FORM E_Social Function n=38
FORM F_PF-screening n=1
FORM F_PF-Mobility n=39
FORM F_PF-UE ADL n=41
FORM F_PF-walking aids n=11
FORM F_PF - Wheel Chair n=21


Sheet 1: FORM A_ROLE PERF (n=49)



On average, it takes 30 minutes to complete the Neuro-QOL survey




1 In the past 7 days I can keep up with my family responsibilities 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
2 In the past 7 days I have trouble meeting the needs of my family 5 = Never
4 = Rarely
3 = Sometimes
3 = Often
1 = Always
3 In the past 7 days I am able to do all of my regular family activities 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
4 In the past 7 days I have to limit my regular family activities 5 = Never
4 = Rarely
3 = Sometimes
3 = Often
1 = Always
5 In the past 7 days I am able to do all of the family activities that people expect me to do 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
6 In the past 7 days I am able to do all of the family activities that I want to do 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
7 In the past 7 days I am able to maintain my friendships as much as I would like 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
8 In the past 7 days I am able to socialize with my friends 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
9 In the past 7 days I am able to do all of my regular activities with friends 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
10 In the past 7 days I have to limit my regular activities with friends 5 = Never
4 = Rarely
3 = Sometimes
3 = Often
1 = Always
11 In the past 7 days I can do everything for my friends that I want to do 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
12 In the past 7 days I am able to do all of the activities with friends that people expect me to do 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
13 In the past 7 days I feel limited in my ability to visit friends 5 = Never
4 = Rarely
3 = Sometimes
3 = Often
1 = Always
14 In the past 7 days I am able to do all of the activities with friends that I want to do 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
15 In the past 7 days I feel limited in the amount of time I have to visit friends 5 = Never
4 = Rarely
3 = Sometimes
3 = Often
1 = Always
16 In the past 7 days I have to limit the things I do for fun at home (like reading, listening to music, etc.) 5 = Never
4 = Rarely
3 = Sometimes
3 = Often
1 = Always
17 In the past 7 days I can keep up with my social commitments 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
18 In the past 7 days I am able to do all of my regular leisure activities 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
19 In the past 7 days I have to limit my hobbies or leisure activities 5 = Never
4 = Rarely
3 = Sometimes
3 = Often
1 = Always
20 In the past 7 days I am able to do my hobbies or leisure activities 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
21 In the past 7 days I am able to do all of the community activities that I want to do 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
22 In the past 7 days I am able to do all of the leisure activities that people expect me to do 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
23 In the past 7 days I have to do my hobbies or leisure activities for shorter periods of time than usual for me 5 = Never
4 = Rarely
3 = Sometimes
3 = Often
1 = Always
24 In the past 7 days I have to limit social activities outside my home 5 = Never
4 = Rarely
3 = Sometimes
3 = Often
1 = Always
25 In the past 7 days I have trouble keeping in touch with others 5 = Never
4 = Rarely
3 = Sometimes
3 = Often
1 = Always
26 In the past 7 days I am able to participate in leisure activities 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
27 In the past 7 days I can do all the leisure activities that I want to do 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
28 In the past 7 days I am able to do all of the community activities that people expect me to do 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
29 In the past 7 days I am able to go out for entertainment as much as I want 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
30 In the past 7 days I have to limit the things I do for fun outside my home 5 = Never
4 = Rarely
3 = Sometimes
3 = Often
1 = Always
31 In the past 7 days I am doing fewer social activities with groups of people than usual for me 5 = Never
4 = Rarely
3 = Sometimes
3 = Often
1 = Always
32 In the past 7 days I am able to perform my daily routines 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
33 In the past 7 days I am able to run errands without difficulty 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
34 In the past 7 days I can keep up with my work responsibilities (include work at home) 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
35 In the past 7 days I am able to do all of my usual work (include work at home) 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
36 In the past 7 days I have trouble taking care of my regular personal and household responsibilities 5 = Never
4 = Rarely
3 = Sometimes
3 = Often
1 = Always
37 In the past 7 days I am accomplishing as much as usual at work for me (include work at home) 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
38 In the past 7 days My ability to do my work is as good as it can be (include work at home) 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
39 In the past 7 days I can do everything for work that I want to do (include work at home) 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
40 In the past 7 days I have trouble doing my regular chores or tasks 5 = Never
4 = Rarely
3 = Sometimes
3 = Often
1 = Always
41 In the past 7 days I am able to do all of the work that people expect me to do (include work at home) 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
42 In the past 7 days I am limited in doing my work (include work at home) 5 = Never
4 = Rarely
3 = Sometimes
3 = Often
1 = Always
43 In the past 7 days I have to do my work for shorter periods of time than usual for me (include work at home) 5 = Never
4 = Rarely
3 = Sometimes
3 = Often
1 = Always
44 In the past 7 days I am able to work at a volunteer job outside my home 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
45 In the past 7 days I am limited in working at a volunteer job outside my home 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
46 In the past 7 days I am able to do all of my usual work 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
47 In the past 7 days I am limited in doing my work 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
48 In the past 7 days I am able to do all of the work that people expect me to do 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
49 In the past 7 days I have to do my work for shorter periods of time than usual for me 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always

Sheet 2: FORM A_ROLE SAT (n=51)

1 In the past 7 days I feel that my family is disappointed in my ability to socialize with them 5 = Not at all
4 = A little bit
3 = Somewhat
2 = Quite a bit
1 = Very much
2 In the past 7 days I am disappointed in my ability to meet the needs of my family 5 = Not at all
4 = A little bit
3 = Somewhat
2 = Quite a bit
1 = Very much
3 In the past 7 days I am bothered by my limitations in regular family activities 5 = Not at all
4 = A little bit
3 = Somewhat
2 = Quite a bit
1 = Very much
4 In the past 7 days I feel good about my ability to do things for my family 1 = Not at all
2 = A little bit
3 = Somewhat
4 = Quite a bit
5 = Very much
5 In the past 7 days I am satisfied with my ability to meet the needs of those who depend on me 1 = Not at all
2 = A little bit
3 = Somewhat
4 = Quite a bit
5 = Very much
6 In the past 7 days I am satisfied with my ability to do things for my family 1 = Not at all
2 = A little bit
3 = Somewhat
4 = Quite a bit
5 = Very much
7 In the past 7 days I am bothered if I have to depend on my family for help 5 = Not at all
4 = A little bit
3 = Somewhat
2 = Quite a bit
1 = Very much
8 In the past 7 days I am satisfied with my current level of activity with family members 1 = Not at all
2 = A little bit
3 = Somewhat
4 = Quite a bit
5 = Very much
9 In the past 7 days I am bothered if I have to depend on others for help 5 = Not at all
4 = A little bit
3 = Somewhat
2 = Quite a bit
1 = Very much
10 In the past 7 days I feel that my friends are disappointed in my ability to socialize with them 5 = Not at all
4 = A little bit
3 = Somewhat
2 = Quite a bit
1 = Very much
11 In the past 7 days I am disappointed in my ability to meet the needs of my friends 5 = Not at all
4 = A little bit
3 = Somewhat
2 = Quite a bit
1 = Very much
12 In the past 7 days I am disappointed in my ability to do things for my friends 5 = Not at all
4 = A little bit
3 = Somewhat
2 = Quite a bit
1 = Very much
13 In the past 7 days I am disappointed in my ability to socialize with friends 5 = Not at all
4 = A little bit
3 = Somewhat
2 = Quite a bit
1 = Very much
14 In the past 7 days I am bothered by limitations in my regular activities with friends 5 = Not at all
4 = A little bit
3 = Somewhat
2 = Quite a bit
1 = Very much
15 In the past 7 days I am disappointed in my ability to keep in touch with others 5 = Not at all
4 = A little bit
3 = Somewhat
2 = Quite a bit
1 = Very much
16 In the past 7 days I am bothered if I have to depend on my friends for help 5 = Not at all
4 = A little bit
3 = Somewhat
2 = Quite a bit
1 = Very much
17 In the past 7 days I wish I could visit my friends more often 5 = Not at all
4 = A little bit
3 = Somewhat
2 = Quite a bit
1 = Very much
18 In the past 7 days I am satisfied with my ability to do things for my friends 1 = Not at all
2 = A little bit
3 = Somewhat
4 = Quite a bit
5 = Very much
19 In the past 7 days I am happy with how much I do for my friends 1 = Not at all
2 = A little bit
3 = Somewhat
4 = Quite a bit
5 = Very much
20 In the past 7 days I am satisfied with my current level of activities with my friends 1 = Not at all
2 = A little bit
3 = Somewhat
4 = Quite a bit
5 = Very much
21 In the past 7 days I am satisfied with the amount of time I spend visiting friends 1 = Not at all
2 = A little bit
3 = Somewhat
4 = Quite a bit
5 = Very much
22 In the past 7 days I feel that others are disappointed in my ability to do community activities 5 = Not at all
4 = A little bit
3 = Somewhat
2 = Quite a bit
1 = Very much
23 In the past 7 days I am disappointed in my ability to socialize with my family 5 = Not at all
4 = A little bit
3 = Somewhat
2 = Quite a bit
1 = Very much
24 In the past 7 days I am disappointed in my ability to do leisure activities 5 = Not at all
4 = A little bit
3 = Somewhat
2 = Quite a bit
1 = Very much
25 In the past 7 days I am bothered by limitations in doing my hobbies or leisure activities 5 = Not at all
4 = A little bit
3 = Somewhat
2 = Quite a bit
1 = Very much
26 In the past 7 days I wish I could do more social activities with groups of people 5 = Not at all
4 = A little bit
3 = Somewhat
2 = Quite a bit
1 = Very much
27 In the past 7 days I am satisfied with my ability to do things for fun at home (like reading, listening to music, etc.) 1 = Not at all
2 = A little bit
3 = Somewhat
4 = Quite a bit
5 = Very much
28 In the past 7 days I wish I could do more social activities outside my home 5 = Not at all
4 = A little bit
3 = Somewhat
2 = Quite a bit
1 = Very much
29 In the past 7 days I am satisfied with my ability to do leisure activities 1 = Not at all
2 = A little bit
3 = Somewhat
4 = Quite a bit
5 = Very much
30 In the past 7 days I am satisfied with my ability to do all of the leisure activities that are really important to me 1 = Not at all
2 = A little bit
3 = Somewhat
4 = Quite a bit
5 = Very much
31 In the past 7 days I am satisfied with my ability to do all of the community activities that are really important to me 1 = Not at all
2 = A little bit
3 = Somewhat
4 = Quite a bit
5 = Very much
32 In the past 7 days I am satisfied with the amount of time I spend doing leisure activities 1 = Not at all
2 = A little bit
3 = Somewhat
4 = Quite a bit
5 = Very much
33 In the past 7 days I am satisfied with my ability to do things for fun outside my home 1 = Not at all
2 = A little bit
3 = Somewhat
4 = Quite a bit
5 = Very much
34 In the past 7 days I am satisfied with my current level of social activity 1 = Not at all
2 = A little bit
3 = Somewhat
4 = Quite a bit
5 = Very much
35 In the past 7 days I feel that I am disappointing other people at work 5 = Not at all
4 = A little bit
3 = Somewhat
2 = Quite a bit
1 = Very much
36 In the past 7 days I am disappointed in my ability to perform my daily routines 5 = Not at all
4 = A little bit
3 = Somewhat
2 = Quite a bit
1 = Very much
37 In the past 7 days I am disappointed in my ability to work (include work at home) 5 = Not at all
4 = A little bit
3 = Somewhat
2 = Quite a bit
1 = Very much
38 In the past 7 days I am bothered by limitations in performing my daily routines 5 = Not at all
4 = A little bit
3 = Somewhat
2 = Quite a bit
1 = Very much
39 In the past 7 days I am disappointed in my ability to take care of personal and household responsibilities 5 = Not at all
4 = A little bit
3 = Somewhat
2 = Quite a bit
1 = Very much
40 In the past 7 days I am bothered by limitations in performing my work (include work at home) 5 = Not at all
4 = A little bit
3 = Somewhat
2 = Quite a bit
1 = Very much
41 In the past 7 days I am satisfied with my ability to run errands 1 = Not at all
2 = A little bit
3 = Somewhat
4 = Quite a bit
5 = Very much
42 In the past 7 days I am satisfied with my ability to perform my daily routines 1 = Not at all
2 = A little bit
3 = Somewhat
4 = Quite a bit
5 = Very much
43 In the past 7 days I am satisfied with my ability to work (include work at home) 1 = Not at all
2 = A little bit
3 = Somewhat
4 = Quite a bit
5 = Very much
44 In the past 7 days I am satisfied with my ability to do the work that is really important to me (include work at home) 1 = Not at all
2 = A little bit
3 = Somewhat
4 = Quite a bit
5 = Very much
45 In the past 7 days I am satisfied with my ability to take care of personal and household responsibilities 1 = Not at all
2 = A little bit
3 = Somewhat
4 = Quite a bit
5 = Very much
46 In the past 7 days I am satisfied with my ability to do household chores or tasks 1 = Not at all
2 = A little bit
3 = Somewhat
4 = Quite a bit
5 = Very much
47 In the past 7 days I am satisfied with how much of my work I can do (include work at home) 1 = Not at all
2 = A little bit
3 = Somewhat
4 = Quite a bit
5 = Very much
48 In the past 7 days I am satisfied with the amount of time I spend doing work (include work at home) 1 = Not at all
2 = A little bit
3 = Somewhat
4 = Quite a bit
5 = Very much
49 In the past 7 days I am satisfied with the amount of time I spend performing my daily routines 1 = Not at all
2 = A little bit
3 = Somewhat
4 = Quite a bit
5 = Very much
50 In the past 7 days I am satisfied with my ability to work 1 = Not at all
2 = A little bit
3 = Somewhat
4 = Quite a bit
5 = Very much
51 In the past 7 days I am bothered by limitations in performing my work 1 = Not at all
2 = A little bit
3 = Somewhat
4 = Quite a bit
5 = Very much

Sheet 3: FORM B_ASSIST DEV (n=13)



On average, it takes 30 minutes to complete the Neuro-QOL survey






1 PF Screen Items 2 & 3 How much DIFFICULTY do you currently have sitting down on and standing up from a chair with arms with your walking aid? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do
2 PF Screen Items 2 & 3 How much DIFFICULTY do you currently have walking on uneven surfaces (e.g., grass, dirt road or sidewalk) with your walking aid? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do
3 PF Screen Items 2 & 3 How much DIFFICULTY do you currently have sitting down or standing up from a low, soft couch with your walking aid? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do
4 PF Screen Items 3 & 4 How much DIFFICULTY do you currently have sitting down on an armless straight chair, using a wheelchair? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do
5 PF Screen Items 3 & 4 How much DIFFICULTY do you currently have propelling / driving a wheelchair for at least 15 minutes? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do
6 PF Screen Items 2 & 3 How much DIFFICULTY do you currently have going up and down three flights of stairs inside, using a handrail with your walking aid? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do
7 PF Screen Items 2 & 3 How much DIFFICULTY do you currently have going up and down a flight of stairs inside, using a handrail with your walking aid? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do
8 PF Screen Items 2 & 3 How much DIFFICULTY do you currently have getting into and out of a truck, bus, shuttle van, or sport utility vehicle with your walking aid? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do
9 PF Screen items 3 & 4 How much DIFFICULTY do you currently have getting into and out of a truck, bus, shuttle van, or sport utility vehicle from a wheelchair? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do
10 PF Screen Items 2 & 3 How much DIFFICULTY do you currently have descending 3-5 stairs without a handrail with your walking aid? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do
11 PF Screen Items 2 & 3 Are you able to go for a walk of at least 15 minutes with your walking aid? 5 = Without any difficulty
4 = With a little difficulty
3 = With some difficulty
2 = With much difficulty
1 = Unable to do
12 PF Screen Items 2 & 3 Are you able to get in and out of a car with your walking aid? 5 = Without any difficulty
4 = With a little difficulty
3 = With some difficulty
2 = With much difficulty
1 = Unable to do
13 PF Screen Items 3 & 4 Are you able to get in and out of a car from a wheelchair? 5 = Without any difficulty
4 = With a little difficulty
3 = With some difficulty
2 = With much difficulty
1 = Unable to do

Sheet 4: FORM B_PF SCREEN (n=1)

Which of the 4 Statements Best Describes You?


I never use a walking device or wheelchair. 1
I use a cane, walker or other walking device at least some of the time, but I never use a wheelchair. 2
I use a walking device at least some of the time and a wheelchair at least some of the time. 3
I use a wheelchair all of the time. I never walk. 4

Sheet 5: FORM B_MOBILITY (n=37)

1 PF Screen Items 1, 2 or 3 How much DIFFICULTY do you currently have standing up from an armless straight chair (e.g., dining room chair)? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do

2 PF Screen Items 1, 2 or 3 How much DIFFICULTY do you currently have sitting down on an armless straight chair (e.g., dining room chair)? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do

3 PF Screen Items 1, 2 or 3 How much DIFFICULTY do you currently have sitting down on and standing up from a chair with arms? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do

4 PF Screen Items 1, 2 or 3 How much DIFFICULTY do you currently have moving from sitting at the side of the bed to lying down on your back? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do

5 PF Screen Items 1, 2 or 3 How much DIFFICULTY do you currently have moving from lying on your back to sitting on the side of the bed? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do

6 PF Screen Items 1, 2 or 3 How much DIFFICULTY do you currently have standing up from a low, soft couch? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do

7 PF Screen Items 1, 2 or 3 How much DIFFICULTY do you currently have sitting down on a low, soft couch? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do

8 PF Screen Items 1, 2 or 3 How much DIFFICULTY do you currently have going up and down a flight of stairs inside, using a handrail? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do

9 PF Screen Items 1, 2 or 3 How much DIFFICULTY do you currently have walking on uneven surfaces (e.g., grass, dirt road or sidewalk)? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do

10 PF Screen Items 1, 2 or 3 How much DIFFICULTY do you currently have opening a window above shoulder height, while standing? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do

11 PF Screen Items 1, 2 or 3 How much DIFFICULTY do you currently have walking around one floor of your home? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do

12 PF Screen Items 1, 2 or 3 How much DIFFICULTY do you currently have getting into and out of a truck, bus, shuttle van, or sport utility vehicle? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do

13 PF Screen Items 1, 2 or 3 How much DIFFICULTY do you currently have running 45 minutes? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do

14 PF Screen Items 1, 2 or 3 How much DIFFICULTY do you currently have running up and down an incline? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do

15 PF Screen Items 1, 2 or 3 How much DIFFICULTY do you currently have walking 45 minutes on an even surface? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do

16 PF Screen Items 1, 2 or 3 How much DIFFICULTY do you currently have taking a 20-minute brisk walk, without stopping to rest? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do

17 PF Screen Items 1, 2 or 3 How much DIFFICULTY do you currently have walking on a slippery surface, outdoors? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do

18 PF Screen Items 1, 2 or 3 How much DIFFICULTY do you currently have getting into and out of a kneeling position? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do

19 PF Screen Items 1, 2 or 3 How much DIFFICULTY do you currently have using an escalator? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do

20 PF Screen Items 1, 2 or 3 How much DIFFICULTY do you currently have crossing the road at a 4-lane traffic light with curbs? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do

21 PF Screen Items 1, 2 or 3 How much DIFFICULTY do you currently have climbing stairs step over step without a handrail? (alternating feet)? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do

22 PF Screen Items 1, 2 or 3 How much DIFFICULTY do you currently have going up and down three flights of stairs inside, using a handrail? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do

23 PF Screen Items 1, 2 or 3 How much DIFFICULTY do you currently have walking in a dark room without falling? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do

24 PF Screen Items 1, 2 or 3 How much DIFFICULTY do you currently have walking in a busy place (e.g., crowded store) without losing your balance? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do

25 PF Screen Items 1, 2 or 3 Are you able to push open a heavy door? 5 = Without any Difficulty
4 = With a Little Difficulty
3 = With Some Difficulty
2 = With Much Difficulty
1 = Unable to Do

26 PF Screen Items 1, 2 or 3 Are you able to get in and out of a car? 5 = Without any Difficulty
4 = With a Little Difficulty
3 = With Some Difficulty
2 = With Much Difficulty
1 = Unable to Do

27 PF Screen Items 1, 2 or 3 Are you able to run at a fast pace for two miles? 5 = Without any Difficulty
4 = With a Little Difficulty
3 = With Some Difficulty
2 = With Much Difficulty
1 = Unable to Do

28 PF Screen Items 1, 2 or 3 Are you able to go for a walk of at least 15 minutes? 5 = Without any Difficulty
4 = With a Little Difficulty
3 = With Some Difficulty
2 = With Much Difficulty
1 = Unable to Do

29 PF Screen Items 1, 2 or 3 Are you able to run or jog for 10 minutes? 5 = Without any Difficulty
4 = With a Little Difficulty
3 = With Some Difficulty
2 = With Much Difficulty
1 = Unable to Do

30 PF Screen Items 1, 2 or 3 Are you able to step up and down curbs? 5 = Without any Difficulty
4 = With a Little Difficulty
3 = With Some Difficulty
2 = With Much Difficulty
1 = Unable to Do

31 PF Screen Items 1, 2 or 3 Are you able to get up off the floor from lying on your back without help? 5 = Without any Difficulty
4 = With a Little Difficulty
3 = With Some Difficulty
2 = With Much Difficulty
1 = Unable to Do

32 PF Screen Items 1, 2 or 3 Are you able to get out of bed into a chair? 5 = Without any Difficulty
4 = With a Little Difficulty
3 = With Some Difficulty
2 = With Much Difficulty
1 = Unable to Do

33 PF Screen Items 1, 2 or 3 Are you able to run errands and shop? 5 = Without any Difficulty
4 = With a Little Difficulty
3 = With Some Difficulty
2 = With Much Difficulty
1 = Unable to Do

34 PF Screen Items 1, 2 or 3 Are you able to jump up and down? 5 = Without any Difficulty
4 = With a Little Difficulty
3 = With Some Difficulty
2 = With Much Difficulty
1 = Unable to Do

35 PF Screen Items 1, 2 or 3 Are you able to run for 5 minutes? 5 = Without any Difficulty
4 = With a Little Difficulty
3 = With Some Difficulty
2 = With Much Difficulty
1 = Unable to Do

36 PF Screen Items 1, 2 or 3 How difficult is it for you to go for a walk of at least 15 minutes? 5 = Without any Difficulty
4 = With a Little Difficulty
3 = With Some Difficulty
2 = With Much Difficulty
1 = Unable to Do

37 PF Screen Items 1, 2 or 3 Are you able to get on and off the toilet? 5 = Without any Difficulty
4 = With a Little Difficulty
3 = With Some Difficulty
2 = With Much Difficulty
1 = Unable to Do


Sheet 6: FORM B_UPPER EXT (n=44)

1
How much DIFFICULTY do you currently have using a fork to eat a meal? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do
2
How much DIFFICULTY do you currently have applying spreads to bread using a knife? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do
3
How much DIFFICULTY do you currently have using a spoon to eat a meal? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do
4
How much DIFFICULTY do you currently have putting on a pullover shirt? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do
5
How much DIFFICULTY do you currently have taking off a pullover shirt? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do
6
How much DIFFICULTY do you currently have removing wrappings from small objects? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do
7
How much DIFFICULTY do you currently have chopping or slicing vegetables (e.g., onions or peppers)? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do
8
How much DIFFICULTY do you currently have reaching behind your back to put a belt through a loop? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do
9 Male only item How much DIFFICULTY do you currently have shaving your neck and face safely and thoroughly with an electric razor? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do
10 Female only item How much DIFFICULTY do you currently have shaving your legs and underarms safely and thoroughly with an electric razor? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do
11
How much DIFFICULTY do you currently have playing cards or Bingo or other light recreational activities? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do
12
How much DIFFICULTY do you currently have picking up a gallon carton of milk with one hand and setting it on the table? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do
13
How much DIFFICULTY do you currently have pounding a nail with a hammer to hang a picture? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do
14
How much DIFFICULTY do you currently have holding a screw and screwing it in tight with a manual screwdriver? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do
15
How much DIFFICULTY do you currently have opening medications or vitamin containers (e.g., childproof containers, small bottles)? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do
16
How much DIFFICULTY do you currently have cleaning yourself after a bowel movement? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do
17
How much DIFFICULTY do you currently have pulling up and fastening your pants after a bowel movement? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do
18
How much DIFFICULTY do you currently have putting a Band-Aid or gauze pad on yourself? 5 = No Difficulty
4 = A Little Difficulty
3 = Some Difficulty
2 = A Lot of Difficulty
1 = Can't Do
19
Are you able to open previously opened jars? 5 = Without Any Difficulty
4 = With a Little Difficulty
3 = With Some Difficulty
2 = With Much Difficulty
1 = Unable to Do
20
Are you able to brush your teeth? 5 = Without Any Difficulty
4 = With a Little Difficulty
3 = With Some Difficulty
2 = With Much Difficulty
1 = Unable to Do
21
Are you able to press with your index finger (for example ringing a doorbell)? 5 = Without Any Difficulty
4 = With a Little Difficulty
3 = With Some Difficulty
2 = With Much Difficulty
1 = Unable to Do
22
Are you able to squeeze a new tube of toothpaste? 5 = Without Any Difficulty
4 = With a Little Difficulty
3 = With Some Difficulty
2 = With Much Difficulty
1 = Unable to Do
23
Are you able to hold a plate full of food? 5 = Without Any Difficulty
4 = With a Little Difficulty
3 = With Some Difficulty
2 = With Much Difficulty
1 = Unable to Do
24
Are you able to remove something from your back pocket? 5 = Without Any Difficulty
4 = With a Little Difficulty
3 = With Some Difficulty
2 = With Much Difficulty
1 = Unable to Do
25
Are you able to wash your face with a washcloth? 5 = Without Any Difficulty
4 = With a Little Difficulty
3 = With Some Difficulty
2 = With Much Difficulty
1 = Unable to Do
26
Are you able to water a house plant? 5 = Without Any Difficulty
4 = With a Little Difficulty
3 = With Some Difficulty
2 = With Much Difficulty
1 = Unable to Do
27
Are you able to open a can with a hand can opener? 5 = Without Any Difficulty
4 = With a Little Difficulty
3 = With Some Difficulty
2 = With Much Difficulty
1 = Unable to Do
28
Are you able to open and close a zipper? 5 = Without Any Difficulty
4 = With a Little Difficulty
3 = With Some Difficulty
2 = With Much Difficulty
1 = Unable to Do
29
Are you able to turn a key in a lock? 5 = Without Any Difficulty
4 = With a Little Difficulty
3 = With Some Difficulty
2 = With Much Difficulty
1 = Unable to Do
30
Are you able to write with a pen or pencil? 5 = Without Any Difficulty
4 = With a Little Difficulty
3 = With Some Difficulty
2 = With Much Difficulty
1 = Unable to Do
31
Are you able to pull on trousers? 5 = Without Any Difficulty
4 = With a Little Difficulty
3 = With Some Difficulty
2 = With Much Difficulty
1 = Unable to Do
32
Are you able to button your shirt? 5 = Without Any Difficulty
4 = With a Little Difficulty
3 = With Some Difficulty
2 = With Much Difficulty
1 = Unable to Do
33
Are you able to wash and dry your body? 5 = Without Any Difficulty
4 = With a Little Difficulty
3 = With Some Difficulty
2 = With Much Difficulty
1 = Unable to Do
34
Are you able to change the bulb in a table lamp? 5 = Without Any Difficulty
4 = With a Little Difficulty
3 = With Some Difficulty
2 = With Much Difficulty
1 = Unable to Do
35
Are you able to cut a piece of paper with scissors? 5 = Without Any Difficulty
4 = With a Little Difficulty
3 = With Some Difficulty
2 = With Much Difficulty
1 = Unable to Do
36
Are you able to pick up coins from a table top? 5 = Without Any Difficulty
4 = With a Little Difficulty
3 = With Some Difficulty
2 = With Much Difficulty
1 = Unable to Do
37
Are you able to shampoo your hair? 5 = Without Any Difficulty
4 = With a Little Difficulty
3 = With Some Difficulty
2 = With Much Difficulty
1 = Unable to Do
38
Are you able to trim your fingernails? 5 = Without Any Difficulty
4 = With a Little Difficulty
3 = With Some Difficulty
2 = With Much Difficulty
1 = Unable to Do
39
Are you able to cut your toe nails? 5 = Without Any Difficulty
4 = With a Little Difficulty
3 = With Some Difficulty
2 = With Much Difficulty
1 = Unable to Do
40
Are you able to tie your shoelaces? 5 = Without Any Difficulty
4 = With a Little Difficulty
3 = With Some Difficulty
2 = With Much Difficulty
1 = Unable to Do
41
Are you able to bend down and pick up clothing from the floor? 5 = Without Any Difficulty
4 = With a Little Difficulty
3 = With Some Difficulty
2 = With Much Difficulty
1 = Unable to Do
42
Are you able to change a light bulb overhead? 5 = Without Any Difficulty
4 = With a Little Difficulty
3 = With Some Difficulty
2 = With Much Difficulty
1 = Unable to Do
43
Are you able to open a tight or new jar? 5 = Without Any Difficulty
4 = With a Little Difficulty
3 = With Some Difficulty
2 = With Much Difficulty
1 = Unable to Do
44
Are you able to make a phone call using a touch tone key-pad? 5 = Without Any Difficulty
4 = With a Little Difficulty
3 = With Some Difficulty
2 = With Much Difficulty
1 = Unable to Do

Sheet 7: FORM C_PPF (n=27)



On average, it takes 30 minutes to complete the Neuro-QOL survey




1 Lately I felt happy about the future 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
2 Lately I was able to enjoy life 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
3 Lately I felt a sense of purpose in my life 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
4 Lately I could laugh and see the humor in situations 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
5 Lately I was able to be at ease and feel relaxed   1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
6 Lately I looked forward with enjoyment to upcoming events 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
7 Lately Many areas of my life were interesting to me 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
8 Lately I felt emotionally stable 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
9 Lately I was able to relax 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
10 Lately I felt lovable 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
11 Lately I felt confident 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
12 Lately I felt hopeful 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
13 Lately I had a good life 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
14 Lately I had a sense of well-being 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
15 Lately My life was satisfying 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
16 Lately I had a sense of balance in my life 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
17 Lately My life had meaning 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
18 Lately My life was peaceful 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
19 Lately My life was worth living 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
20 Lately My life had purpose 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
21 Lately I was living life to the fullest 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
22 Lately I felt cheerful 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
23 Lately In most ways my life was close to my ideal. 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
24 Lately I had good control of my thoughts. 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
25 Lately I had good control of my emotions. 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
26 Lately Even when things were going badly, I still had hope. 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
27 Lately I felt loved and wanted. 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always

Sheet 8: FORM C_DEP (n=31)

1 In the past 7 days I felt lonely even when I was with other people 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
2 In the past 7 days I felt worthless 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
3 In the past 7 days I felt that I had nothing to look forward to 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
4 In the past 7 days I felt helpless 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
5 In the past 7 days I withdrew from other people 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
6 In the past 7 days I felt that everything I did was an effort 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
7 In the past 7 days I felt that nothing could cheer me up 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
8 In the past 7 days I was critical of myself for my mistakes 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
9 In the past 7 days I felt like crying 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
10 In the past 7 days I felt sad 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
11 In the past 7 days I felt that I wanted to give up on everything 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
12 In the past 7 days I felt lonely 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
13 In the past 7 days I felt depressed 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
14 In the past 7 days I felt discouraged about the future 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
15 In the past 7 days I wished I were dead and away from it all 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
16 In the past 7 days I thought about suicide 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
17 In the past 7 days I had crying spells 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
18 In the past 7 days I found that things in my life were overwhelming 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
19 In the past 7 days I felt unhappy 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
20 In the past 7 days I felt unloved 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
21 In the past 7 days I felt I had no reason for living 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
22 In the past 7 days I felt that others would be better off if I were dead 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
23 In the past 7 days I felt hopeless 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
24 In the past 7 days I felt that nothing was interesting 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
25 In the past 7 days I felt pessimistic 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
26 In the past 7 days I had trouble keeping my mind on what I was doing 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
27 In the past 7 days I felt that my life was empty 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
28 In the past 7 days I felt emotionally exhausted 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
29 In the past 7 days I felt like I needed help for my depression 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
30 In the past 7 days I had trouble enjoying things that I used to enjoy 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always

Sheet 9: FORM C_ANX (n=28)

1 In the past 7 days I was afraid of what the future holds for me 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
2 In the past 7 days I felt fearful about my future 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
3 In the past 7 days I felt anxious 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
4 In the past 7 days I worried about my physical health 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
5 In the past 7 days I felt like I needed help for my anxiety 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
6 In the past 7 days I had a racing or pounding heart 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
7 In the past 7 days I felt nervous when my normal routine was disturbed 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
8 In the past 7 days I had trouble falling asleep 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
9 In the past 7 days I had sudden feelings of panic 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
10 In the past 7 days My sleep was restless 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
11 In the past 7 days I was easily startled 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
12 In the past 7 days I felt fidgety 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
13 In the past 7 days I felt something awful would happen 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
14 In the past 7 days I felt worried 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
15 In the past 7 days I felt nervous when I was left alone 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
16 In the past 7 days I felt terrified 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
17 In the past 7 days I suddenly felt scared for no reason 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
18 In the past 7 days I worried about dying 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
19 In the past 7 days I was preoccupied with my worries 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
20 In the past 7 days My worries overwhelmed me 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
21 In the past 7 days I felt shy 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
22 In the past 7 days I felt nervous 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
23 In the past 7 days Many situations made me worry 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
24 In the past 7 days I had trouble sleeping 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
25 In the past 7 days I had trouble relaxing 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
26 In the past 7 days I felt uneasy 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
27 In the past 7 days I felt tense 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always
28 In the past 7 days I had difficulty calming down 1 = Never
2 = Rarely
3 = Sometimes
4 = Often
5 = Always

Sheet 10: FORM D_COG (n=88)



On average, it takes 30 minutes to complete the Neuro-QOL survey




1 How much DIFFICULTY do you currently have writing notes to yourself, such as appointments or 'to do' lists? 5=None 4=A Little 3=Somewhat 2=A lot 1=Cannot Do
2 How much DIFFICULTY do you currently have composing a brief note or e-mail to someone? 5=None 4=A Little 3=Somewhat 2=A lot 1=Cannot Do
3 How much DIFFICULTY do you currently have understanding familiar people during ordinary conversations? 5=None 4=A Little 3=Somewhat 2=A lot 1=Cannot Do
4 How much DIFFICULTY do you currently have understanding family and friends on the phone? 5=None 4=A Little 3=Somewhat 2=A lot 1=Cannot Do
5 How much DIFFICULTY do you currently have making yourself understood to familiar people over the phone? 5=None 4=A Little 3=Somewhat 2=A lot 1=Cannot Do
6 How much DIFFICULTY do you currently have making yourself understood to other people during ordinary conversations? 5=None 4=A Little 3=Somewhat 2=A lot 1=Cannot Do
7 How much DIFFICULTY do you currently have describing something that has happened to you so that others can understand you? 5=None 4=A Little 3=Somewhat 2=A lot 1=Cannot Do
8 How much DIFFICULTY do you currently have carrying on a conversation with a small group of familiar people (e.g., family or a few friends)? 5=None 4=A Little 3=Somewhat 2=A lot 1=Cannot Do
9 How much DIFFICULTY do you currently have putting words together to form grammatically correct sentences? 5=None 4=A Little 3=Somewhat 2=A lot 1=Cannot Do
10 How much DIFFICULTY do you currently have organizing what you want to say? 5=None 4=A Little 3=Somewhat 2=A lot 1=Cannot Do
11 How much DIFFICULTY do you currently have speaking clearly enough to use the telephone? 5=None 4=A Little 3=Somewhat 2=A lot 1=Cannot Do
12 How much DIFFICULTY do you currently have reading simple material (e.g., a menu or the TV or radio guide)? 5=None 4=A Little 3=Somewhat 2=A lot 1=Cannot Do
13 How much DIFFICULTY do you currently have reading the newspaper or magazine? 5=None 4=A Little 3=Somewhat 2=A lot 1=Cannot Do
14 How much DIFFICULTY do you currently have understanding information on food labels? 5=None 4=A Little 3=Somewhat 2=A lot 1=Cannot Do
15 How much DIFFICULTY do you currently have keeping track of time (eg., using a clock)? 5=None 4=A Little 3=Somewhat 2=A lot 1=Cannot Do
16 How much DIFFICULTY do you currently have checking the accuracy of financial documents, (e,g., bills, checkbook, or bank statements)? 5=None 4=A Little 3=Somewhat 2=A lot 1=Cannot Do
17 How much DIFFICULTY do you currently have counting the correct amount of money when making purchases? 5=None 4=A Little 3=Somewhat 2=A lot 1=Cannot Do
18 How much DIFFICULTY do you currently have doing calculations in your head while shopping (e.g., 30% off, etc.)? 5=None 4=A Little 3=Somewhat 2=A lot 1=Cannot Do
19 How much DIFFICULTY do you currently have using information on the bill to figure out where to call if you have a problem? 5=None 4=A Little 3=Somewhat 2=A lot 1=Cannot Do
20 How much DIFFICULTY do you currently have carrying on a conversation with a familiar person in a noisy environment (e.g., at a party or meeting)? 5=None 4=A Little 3=Somewhat 2=A lot 1=Cannot Do
21 How much DIFFICULTY do you currently have following a series of dialing instructions (e.g., a recorded message "Press 1 for...")? 5=None 4=A Little 3=Somewhat 2=A lot 1=Cannot Do
22 How much DIFFICULTY do you currently have reading and following complex instructions (e.g., directions for a new medication)? 5=None 4=A Little 3=Somewhat 2=A lot 1=Cannot Do
23 How much DIFFICULTY do you currently have looking up a phone number or address in the phone book? 5=None 4=A Little 3=Somewhat 2=A lot 1=Cannot Do
24 How much DIFFICULTY do you currently have planning for and keeping appointments that are not part of your weekly routine, (e.g., a therapy or doctor appointment, or a social gathering with friends and family)? 5=None 4=A Little 3=Somewhat 2=A lot 1=Cannot Do
25 How much DIFFICULTY do you currently have managing your time to do most of your daily activities? 5=None 4=A Little 3=Somewhat 2=A lot 1=Cannot Do
26 How much DIFFICULTY do you currently have planning an activity several days in advance (e.g., a meal, trip, or visit to friends)? 5=None 4=A Little 3=Somewhat 2=A lot 1=Cannot Do
27 How much DIFFICULTY do you currently have taking care of complicated tasks like managing a checking account or getting appliances fixed? 5=None 4=A Little 3=Somewhat 2=A lot 1=Cannot Do
28 How much DIFFICULTY do you currently have keeping important personal papers such as bills, insurance documents and tax forms organized? 5=None 4=A Little 3=Somewhat 2=A lot 1=Cannot Do
29 How much DIFFICULTY do you currently have handling an unfamiliar problem (e.g., getting the refrigerator fixed)? 5=None 4=A Little 3=Somewhat 2=A lot 1=Cannot Do
30 How much DIFFICULTY do you currently have planning for and completing regularly scheduled weekly tasks, such as taking out the trash or doing laundry? 5=None 4=A Little 3=Somewhat 2=A lot 1=Cannot Do
31 How much DIFFICULTY do you currently have getting things organized? 5=None 4=A Little 3=Somewhat 2=A lot 1=Cannot Do
32 How much DIFFICULTY do you currently have planning what to do in the day? 5=None 4=A Little 3=Somewhat 2=A lot 1=Cannot Do
33 How much DIFFICULTY do you currently have explaining how to do something involving several steps to another person? 5=None 4=A Little 3=Somewhat 2=A lot 1=Cannot Do
34 How much DIFFICULTY do you currently have using a local street map to locate a new store or doctor's office? 5=None 4=A Little 3=Somewhat 2=A lot 1=Cannot Do
35 How much DIFFICULTY do you currently have dialing familiar numbers such as a family member or doctor (without losing your place or misdialing)? 5=None 4=A Little 3=Somewhat 2=A lot 1=Cannot Do
36 How much DIFFICULTY do you currently have reading a long book (over 100 pages) over a number of days? 5=None 4=A Little 3=Somewhat 2=A lot 1=Cannot Do
37 How much DIFFICULTY do you currently have remembering to take medications at the appropriate time? 5=None 4=A Little 3=Somewhat 2=A lot 1=Cannot Do
38 How much DIFFICULTY do you currently have remembering where things were placed or put away (e.g., keys)? 5=None 4=A Little 3=Somewhat 2=A lot 1=Cannot Do
39 How much DIFFICULTY do you currently have remembering a list of 4 or 5 errands without writing it down? 5=None 4=A Little 3=Somewhat 2=A lot 1=Cannot Do
40 How much DIFFICULTY do you currently have learning new tasks or instructions? 5=None 4=A Little 3=Somewhat 2=A lot 1=Cannot Do
41 How much DIFFICULTY do you currently have using a map to tell where to go? 5=None 4=A Little 3=Somewhat 2=A lot 1=Cannot Do
42 How much DIFFICULTY do you currently have understanding pictures that explain how to assemble something? 5=None 4=A Little 3=Somewhat 2=A lot 1=Cannot Do
43 In the past 7 days I got confused, for example, I did not know where I was 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)
44 In the past 7 days I had difficulty paying attention for a long period of time 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)
45 In the past 7 days I felt like my mind went blank 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)
46 In the past 7 days I made simple mistakes more easily 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)
47 In the past 7 days After I made a mistake, I got stuck and couldn’t figure out a new way to go 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)
48 In the past 7 days I had trouble recognizing my mistakes right away 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)
49 In the past 7 days I had trouble saying what I mean in conversations with others 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)
50 In the past 7 days I was told that I start talking before the other person finishes 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)
51 In the past 7 days I was told that I repeat myself 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)
52 In the past 7 days I was a worse listener than usual 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)
53 In the past 7 days Words I wanted to use seemed to be on the “tip of my tongue” 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)
54 In the past 7 days I had trouble finding the right word(s) to express myself 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)
55 In the past 7 days I used the wrong word when I referred to an object 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)
56 In the past 7 days I communicated by gestures, for example, moving my head, pointing or sign language 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)
57 In the past 7 days My speech was understood only by a few people who know me well 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)
58 In the past 7 days I had to repeat myself so others could understand me 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)
59 In the past 7 days I slurred or stuttered while speaking 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)
60 In the past 7 days I had to talk very slowly to make myself understood 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)
61 In the past 7 days My speech was difficult for others to understand 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)
62 In the past 7 days I had trouble recalling the name of an object 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)
63 In the past 7 days I had trouble recognizing familiar words on a page 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)
64 In the past 7 days I had to read something several times to understand it 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)
65 In the past 7 days I had trouble keeping track of what I was doing if I was interrupted 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)
66 In the past 7 days I had difficulty doing more than one thing at a time 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)
67 In the past 7 days I had trouble remembering whether I did things I was supposed to do, like taking a medicine or buying something I needed 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)
68 In the past 7 days I had trouble remembering new information, like phone numbers or simple instructions 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)
69 In the past 7 days I walked into a room and forgot what I meant to get or do there 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)
70 In the past 7 days I had trouble remembering the name of a familiar person 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)
71 In the past 7 days I forgot to do things like turn off the stove or turn on my alarm clock" 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)
72 In the past 7 days I had trouble thinking clearly 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)
73 In the past 7 days I reacted slowly to things that were said or done 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)
74 In the past 7 days I had trouble forming thoughts 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)
75 In the past 7 days My thinking was slow 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)
76 In the past 7 days My thinking was confused 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)
77 In the past 7 days, I had to work really hard to pay attention or I would make a mistake 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)
78 In the past 7 days, I had trouble adding or subtracting numbers in my head 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)
79 In the past 7 days, I made mistakes when writing down phone numbers 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)
80 In the past 7 days, I had trouble concentrating 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)
81 In the past 7 days, I had trouble spelling words correctly when writing 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)
82 In the past 7 days, I had trouble keeping track of the day or date 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)
83 In the past 7 days, I had trouble getting started on very simple tasks 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)
84 In the past 7 days, I had trouble making decisions 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)
85 In the past 7 days, When I had something to do that takes a long time, I had trouble deciding where to start 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)
86 In the past 7 days, I had trouble planning out steps of a task 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)
87 In the past 7 days, I needed medical instructions repeated because I could not keep them straight 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)
88 In the past 7 days, When I was reading I needed to use a ruler or my finger to keep track of which line I was on 1=Never 2=Rarely (once) 3=Sometimes (two or three times) 4=Often (about once a day) 5=Very often (several times a day)

Sheet 11: FORM E_Emotional Distress N=46



On average, it takes 30 minutes to complete the Neuro-QOL survey




1 In the past 7 days I felt too sad to do things with friends 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
2 In the past 7 days I become anxious when I go back to the hospital or clinic 0 = not at all
1 = a little bit
2 = somewhat
3 = quite a bit
4 = very much
3 In the past 7 days I worry about how my health will affect my future. 0 = not at all
1 = a little bit
2 = somewhat
3 = quite a bit
4 = very much
4 In the past 7 days I felt sad. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
5 In the past 7 days I felt like eating 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
6 In the past 7 days Because of my health, I worry about having a boyfriend or girlfriend. 0 = not at all
1 = a little bit
2 = somewhat
3 = quite a bit
4 = very much
7 In the past 7 days I thought that my life was bad. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
8 In the past 7 days I was bored. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
9 In the past 7 days I felt lonely. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
10 In the past 7 days I worry about getting a good job because of my medical condition 0 = not at all
1 = a little bit
2 = somewhat
3 = quite a bit
4 = very much
11 In the past 7 days I felt frustrated 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
12 In the past 7 days Being angry made it hard for me to be with my friends 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
13 In the past 7 days It was hard to do schoolwork because I was angry 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
14 In the past 7 days I felt angry. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
15 In the past 7 days I was so mad that I felt like throwing something. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
16 In the past 7 days I was so mad that I felt like hitting something. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
17 In the past 7 days I was so mad that I felt like yelling at someone. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
18 In the past 7 days I was so mad that I felt like breaking things. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
19 In the past 7 days I was so mad that I acted grouchy towards other people. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
20 In the past 7 days I get nervous more easily than other people 0 = not at all
1 = a little bit
2 = somewhat
3 = quite a bit
4 = very much
21 In the past 7 days I worried when I was away from my family 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
22 In the past 7 days I felt afraid to go out alone 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
23 In the past 7 days Being worried made it hard for me to be with my friends 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
24 In the past 7 days It was hard to do schoolwork because I was nervous or worried 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
25 In the past 7 days I got scared easily. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
26 In the past 7 days I felt afraid. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
27 In the past 7 days I was worried that I might die. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
28 In the past 7 days I worried when I was at home. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
29 In the past 7 days I felt worried. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
30 In the past 7 days I felt nervous. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
31 In the past 7 days I was less interested in doing things I usually enjoy 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
32 In the past 7 days My mood swings from good feelings to bad feelings 0 = not at all
1 = a little bit
2 = somewhat
3 = quite a bit
4 = very much
33 In the past 7 days I had trouble sleeping. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
34 In the past 7 days It was hard for me to care about anything 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
35 In the past 7 days I wanted to be by myself. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
36 In the past 7 days It was hard for me to have fun. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
37 In the past 7 days I felt that no one loved me. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
38 In the past 7 days I cried more often than usual. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
39 In the past 7 days I felt alone. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
40 In the past 7 days I felt like I couldn't do anything right. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
41 In the past 7 days I felt everything in my life went wrong. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
42 In the past 7 days I felt too sad to do my schoolwork 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
43 In the past 7 days I worry that my health might get worse 0 = not at all
1 = a little bit
2 = somewhat
3 = quite a bit
4 = very much
44 In the past 7 days Because of my health, I worry about being able to go to college 0 = not at all
1 = a little bit
2 = somewhat
3 = quite a bit
4 = very much
45 In the past 7 days Because of my health, I worry about getting a job to support myself 0 = not at all
1 = a little bit
2 = somewhat
3 = quite a bit
4 = very much
46 In the past 7 days I worry about doing well in school 0 = not at all
1 = a little bit
2 = somewhat
3 = quite a bit
4 = very much

Sheet 12: FORM E_Social Function n=38

1 In the past 7 days I got along with my classmates. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
2 In the past 7 days I wished I had more friends. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
3 In the past 7 days I liked being around other kids my age. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
4 In the past 7 days I had trouble getting along with other kids my age. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
5 In the past 7 days I had trouble getting along with my family. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
6 In the past 7 days I was mean to other people. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
7 In the past 7 days I teased other kids. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
8 In the past 7 days I got along with my parents or guardians. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
9 In the past 7 days I felt accepted by other kids my age. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
10 In the past 7 days I was able to talk openly with my friends. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
11 In the past 7 days I felt close to my friends. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
12 In the past 7 days I was able to count on my friends. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
13 In the past 7 days I felt loved by my parents or guardians. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
14 In the past 7 days I was happy at home. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
15 In the past 7 days My parents or guardians spent enough time with me. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
16 In the past 7 days I got along well with my teachers. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
17 In the past 7 days I felt different from other kids my age. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
18 In the past 7 days I shared with other kids (food, games, pens, etc.). 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
19 In the past 7 days I was able to stand up for myself. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
20 In the past 7 days I felt comfortable with others my age. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
21 In the past 7 days My teachers accepted me. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
22 In the past 7 days My teachers respected me. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
23 In the past 7 days I worried about losing friends. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
24 In the past 7 days I got into fights (hitting, kicking, pushing) with other kids. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
25 In the past 7 days My parents or guardians seem to know what's important to me. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
26 No timeframe I think I have fewer friends than other people my age. 0 = not at all
1 = a little bit
2 = somewhat
3 = quite a bit
4 = very much
27 No timeframe I feel lonely. 0 = not at all
1 = a little bit
2 = somewhat
3 = quite a bit
4 = very much
28 In the past 7 days I was happy with the friends I had. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
29 In the past 7 days My friends ignored me. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
30 In the past 7 days I felt comfortable talking with my friends. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
31 In the past 7 days I wanted to spend time with my friends. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
32 In the past 7 days I spent time with my friends. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
33 In the past 7 days I did things with other kids my age. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
34 In the past 7 days I felt comfortable talking with my parents or guardians. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
35 In the past 7 days Because of my health, I missed out on important activities. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
36 In the past 7 days My friends and I helped each other out. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
37 In the past 7 days I argued with my parents or other adults. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
38 In the past 7 days I had fun with my friends. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always

Sheet 13: FORM F_PF-screening n=1

On average, it takes 30 minutes to complete the Neuro-QOL survey


Which of the 4 Statements Best Describes You?


I never use a walking device or wheelchair. 1
I use a cane, walker or other walking device at least some of the time, but I never use a wheelchair. 2
I use a walking device at least some of the time and a wheelchair at least some of the time. 3
I use a wheelchair all of the time. I never walk. 4

Sheet 14: FORM F_PF-Mobility n=39

1 In the past 7 days I could keep my balance while walking for 30 minutes 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
2 In the past 7 days I could get down on my knees without holding on to something. 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
3 In the past 7 days I could keep up when I played with other kids. 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
4 In the past 7 days I could walk for 15 minutes 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
5 In the past 7 days I could walk between rooms 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
6 In the past 7 days I could run as fast as others my own age. 0 = not at all
1 = a little bit
2 = somewhat
3 = quite a bit
4 = very much
7 In the past 7 days I could get on and off the toilet. 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
8 In the past 7 days I could get on and off the toilet without using my arms. 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
9 In the past 7 days I could get on and off a low chair 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
10 In the past 7 days I could get in and out of an adult-sized chair 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
11 In the past 7 days I could get on and off a chair without using my arms. 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
12 In the past 7 days I could walk for 30 minutes 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
13 In the past 7 days I could get up from the floor by myself 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
14 In the past 7 days I could sit on a bench without support for 15 minutes 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
15 In the past 7 days I could sit on a bench without back support for 30 minutes 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
16 In the past 7 days I could keep my balance while walking for 15 minutes 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
17 In the past 7 days I could stand on my tiptoes to reach for something 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
18 In the past 7 days I could stand on my tiptoes to put something (e.g., 5 lb bag of sugar) on a shelf 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
19 In the past 7 days I could turn my head all the way to the side to look at someone or something 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
20 In the past 7 days I fall down easily 0 = not at all
1 = a little bit
2 = somewhat
3 = quite a bit
4 = very much
21 In the past 7 days I could walk on slightly uneven surfaces (such as cracked pavement) 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
22 In the past 7 days I lose my balance easily 0 = not at all
1 = a little bit
2 = somewhat
3 = quite a bit
4 = very much
23 In the past 7 days I have trouble keeping up with other kids my age when walking 0 = not at all
1 = a little bit
2 = somewhat
3 = quite a bit
4 = very much
24 In the past 7 days I could walk on rough, uneven surfaces (such as lawns, gravel driveway) 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
25 In the past 7 days I could walk up and down ramps or hills 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
26 In the past 7 days I could walk up and down curbs 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
27 In the past 7 days I could run for 15 minutes 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
28 In the past 7 days I could run for 30 minutes. 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
29 In the past 7 days I could get in and out of a bus 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
30 In the past 7 days I could get in and out of a car. 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
31 In the past 7 days I could walk across the room. 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
32 In the past 7 days I could walk while wearing a backpack full of books. 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
33 In the past 7 days I could bend over to pick something up. 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
34 In the past 7 days I could do sports that others my age can do. 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
35 In the past 7 days I could do exercise that others my age can do. 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
36 In the past 7 days I could carry bags (such as shopping bags) while going up a full flight of stairs 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
37 In the past 7 days I could carry bags (such as shopping bags) while going down a full flight of stairs 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
38 In the past 7 days I could ride a bicycle 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
39 In the past 7 days I could walk up 2-3 stairs 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble

Sheet 15: FORM F_PF-UE ADL n=41

1 In the past 7 days I was able to open small containers like snack bags or vitamins (regular screw top) 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
2 In the past 7 days I was able to wash and dry my hands without help 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
3 In the past 7 days I was able to use my fingers to point to something 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
4 In the past 7 days I was able to take off my socks 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
5 In the past 7 days I was able to put on and fasten my pants by myself 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
6 In the past 7 days I was able to button and unbutton my shirt 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
7 In the past 7 days I was able to unzip my pants 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
8 In the past 7 days I was able to hold a full cup of water in my hand. 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
9 In the past 7 days I was able to wash my hair without help 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
10 In the past 7 days I was able to lift a cup of water to my mouth without spilling 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
11 In the past 7 days I was able to use a spoon to bring food up to my mouth 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
12 In the past 7 days I was able to use a knife to spread butter or jelly on bread 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
13 In the past 7 days I was able to wipe myself thoroughly after using the toilet 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
14 In the past 7 days I was able to pull my pants back up after using the toilet 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
15 In the past 7 days I was able to hold a plate full of food 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
16 In the past 7 days I was able to carry a tray of food in a cafeteria or restaurant 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
17 In the past 7 days I was able to pick up a gallon of milk with one hand and set it on the table 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
18 In the past 7 days I was able to get in and out of a tub without help 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
19 In the past 7 days I was able to cut a piece of paper in half with scissors 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
20 In the past 7 days I was able to style my hair by myself 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
21 In the past 7 days I was able to cover my nose when sneezing 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
22 In the past 7 days I was able to use a computer mouse 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
23 In the past 7 days I was able to open a can of soda 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
24 In the past 7 days I was able to take a shower by myself. 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
25 In the past 7 days I was able to take a bath by myself. 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
26 In the past 7 days I was able to change positions in my bed. 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
27 In the past 7 days I was able to write a short note by using a pencil or pen. 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
28 In the past 7 days I was able to communicate with friends using e-mail or text messaging 0 = Never
1 = Almost Never
2 = Sometimes
3 = Often
4 = Almost Always
29 In the past 7 days I was able to make a phone call using a touch tone key-pad 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
30 In the past 7 days I was able to get out of bed by myself. 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
31 In the past 7 days I was able to get into bed by myself. 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
32 In the past 7 days I was able to put on my shoes by myself. 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
33 In the past 7 days I was able to open a jar by myself. 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
34 In the past 7 days I was able to put toothpaste on my toothbrush by myself. 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
35 In the past 7 days I was able to brush my teeth by myself. 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
36 In the past 7 days I was able to pull open heavy doors. 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
37 In the past 7 days I was able to open the rings in school binders. 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
38 In the past 7 days I was able to dry my back with a towel. 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
39 In the past 7 days I was able to put on my clothes by myself. 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
40 In the past 7 days I was able to zip up my clothes. 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble

Sheet 16: FORM F_PF-walking aids n=11

1 In the past 7 days With a walking aid I could walk for 15 minutes 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
2 In the past 7 days With a walking aid I could walk for 30 minutes 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
3 In the past 7 days With a walking aid I could walk on slightly uneven surfaces (cracked pavement) 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
4 In the past 7 days With a walking aid I could walk on rough, uneven surfaces (lawns, gravel driveway) 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
5 In the past 7 days With a walking aid I could walk up and down inclines or ramps 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
6 In the past 7 days With a walking aid I could walk up and down curbs 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
7 In the past 7 days With a walking aid I could open and close inside or outside doors to walk between rooms
0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
8 In the past 7 days With a walking aid I could walk within a room 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
9 In the past 7 days With a walking aid I could walk across the room. 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
10 In the past 7 days With a walking aid I could walk up stairs without holding on to anything. 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
11 In the past 7 days With a walking aid I could get in and out of a car. 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble

Sheet 17: FORM F_PF - Wheel Chair n=21

1 In the past 7 days I could move up and down curbs using a wheelchair 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
2 In the past 7 days I could move up and down inclines or ramps using a wheelchair 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
3 In the past 7 days I could move on rough, uneven surfaces (lawns, gravel driveway) using a wheelchair 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
4 In the past 7 days I could move between my wheelchair and another seat such as a chair or bed 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
5 In the past 7 days I could move around within a room, including making turns in my wheelchair 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
6 In the past 7 days I could manage getting on and off the tub bench from a wheelchair 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
7 In the past 7 days I could manage getting on and off the toilet from a wheelchair 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
8 In the past 7 days I could stand up from an armless straight chair using my wheelchair 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
9 In the past 7 days I could move on slightly uneven surfaces (cracked pavement) 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
10 In the past 7 days I could move for 30 minutes using a wheelchair 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
11 In the past 7 days I could park a wheelchair in a narrow space (e.g., in an elevator) 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
12 In the past 7 days I could back out of an elevator in a wheelchair if there was no room to turn around 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
13 In the past 7 days I could do a wheelie (e.g., popping front wheels off the floor and balancing on back wheels) using my wheelchair 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
14 In the past 7 days I could reach for a high object from my wheelchair 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
15 In the past 7 days I could reverse direction in my wheelchair 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
16 In the past 7 days I could open a door that faced away from my wheelchair 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
17 In the past 7 days I could open a door that was facing my wheelchair 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
18 In the past 7 days I could lock and unlock my wheelchair brakes 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
19 In the past 7 days I could manage the armrests on my wheelchair 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
20 In the past 7 days I could manage the footrests on my wheelchair. 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
21 In the past 7 days I could move for 15 minutes using a wheelchair 0 = With no trouble
1 = With a little trouble
2 = With some trouble
3 = With a lot of trouble
File Typeapplication/vnd.ms-excel
Authorvictord
Last Modified Bycurriem
File Modified2008-02-27
File Created2007-05-10

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