Form 1 Survey

Quality of Life Outcomes in Neurological Disorders (NINDS)

APPENDIX 1 NEURO-QOL OMB

Neuro-QOL Form

OMB: 0925-0592

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OMB# 0925-XXX;Exp: XX/XXXX

Neuro-QOL Sociodemographic & Clinical Forms Date Last Modified 2/5/2021

Neuro-QOL Adult Sociodemographic Form


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



1


What is your telephone area code

(where you currently live)?


__________________


2

What is your age?


__________________


3

What is your gender?

1=Male
2=Female


4

Are you of Spanish/Hispanic/Latino origin?

0=No
1=Yes



5


What is your racial or ethnic background? (Please mark all that apply)

1=White
2=Black or African-American
3=American Indian/Alaska Native
4=Asian
5=Native Hawaiian/Other Pacific Islander


6

What is your current relationship status?

1=Never Married
2=Married
3=Living with partner in committed relationship
4=Separated
5=Divorced
6=Widowed


7


What is the highest grade in school that you completed?


1=5th grade or less
2= 6th grade
3=7th grade
4=8th grade
5=Some high school
6=High school grad/GED
7=Some college/Technical degree/AA
8=College degree (BA/BS)
9=Advanced degree (MA, PhD, MD)


8


What is your current occupational status? (Please mark all that apply)

1=Homemaker
2=Unemployed
3=Retired
4=On disability
5= On leave of absence
6=Full-time employed
7=Part-time employed
8=Full-time student


9


What is your family household income (from all sources)?

1=Less than $20,000
2=Between $20,000 and $49,999
3=Between $50,000 and $99,999
4=$100,000 or more


10

What is your height?

______(feet) _______(inches)

11

What is your weight in pounds?


___________________


12

Mobility

1=I have no problems in walking about
2=I have some problems in walking about
3=I am confined to bed


13

Self-Care

1=I have no problems with self-care
2=I have some problems with washing or dressing myself
3=I am unable to wash or dress myself



14


Usual Activities (e.g. work, study, housework, family or leisure activities)

1=I have no problems with performing my usual activities
2=I have some problems with performing my usual activities
3=I am unable to perform my usual activities



15


Please indicate which statement below best describes your current activity level

0=I have normal activity, without symptoms
1=I have some symptoms, but do not require bed rest during the

waking day
2=I require bed rest for less than 50% of the waking day
3=I require bed rest for more than 50% of the waking day
4=I am unable to get out of bed


16

Pain/Discomfort

1=I have no pain or discomfort
2=I have moderate pain or discomfort
3=I have extreme pain or discomfort


17

Anxiety/Depression

1=I am not anxious or depressed
2=I am moderately anxious or depressed
3=I am extremely anxious or depressed


18




In the past 30 days, have you used or taken medication for which a prescription is needed? Include only those products prescribed by a health professional such as a doctor or dentist.

0=No
1=Yes
2=Don't Know


19


How many different times did you stay in any hospital overnight or longer during the past 12 months?


_______________


20




During the past 30 days, for about how many days did poor physical or mental health keep you from doing your usual activities such as self-care, work, or recreation?



________________




Neuro-QOL Adult Clinical Form


***Note that each patient will not necessarily complete each of the following questions, but only those that apply***


1


Have you ever been told by a doctor or a health professional that you have high blood pressure (hypertension)?

0 = No
1 = Yes

2


Are any of your current activities limited by your high blood pressure (hypertension)?

0 = No
1 = Yes

3


Have you ever been told by a doctor or a health professional that you had chest pain (angina)?

0 = No
1 = Yes

4


Are any of your current activities limited by your chest pain (angina)?

0 = No
1 = Yes

5


Have you ever been told by a doctor or a health professional that you have hardening of the arteries (coronary artery disease)?

0 = No
1 = Yes

6


Are any of your current activities limited by your hardening of the arteries (coronary artery disease)?

0 = No
1 = Yes

7


Have you ever been told by a doctor or a health professional that you have heart failure or congestive heart failure?

0 = No
1 = Yes

8


Are any of your current activities limited by your heart failure or congestive heart failure?

0 = No
1 = Yes

9


Have you ever been told by a doctor or a health professional that you had a heart attack (myocardial infarction)?

0 = No
1 = Yes

10


Are any of your current activities limited by your heart attack (myocardial infarction)?

0 = No
1 = Yes

11


Have you ever been told by a doctor or a health professional that you had a stroke or transient ischemic attack (TIA)?

0 = No
1 = Yes

12


Are any of your current activities limited by your stroke or transient ischemic attack (TIA)?

0 = No
1 = Yes

13


How many years ago did you have your stroke or transient ischemic attack (TIA)?

_____________

14



Compare your overall stroke-related symptoms now with what you experienced one year ago. Are they better, worse or about the same?

1=Better
2=Worse
3=About the Same

15


Have you ever been told by a doctor or a health professional that you have migraines or severe headaches?

0 = No
1 = Yes

16


Are any of your current activities limited by your migraines or severe headaches?

0 = No
1 = Yes

17


Have you ever been told by a doctor or a health professional that you have diabetes or high blood sugar or sugar in your urine?

0 = No
1 = Yes

18


Are any of your current activities limited by your diabetes or high blood sugar or sugar in your urine?

0 = No
1 = Yes

19

How many years have you had diabetes?

______________

20


Has your diabetes caused a problem for any of the following parts of your body: eyes, kidneys or feet?

0=No
1=Yes
2=Not Sure

21

Have you ever been hospitalized because of your diabetes?

0=No
1=Yes
2=Not Sure

22


Have you ever been told by a doctor or a health professional that you have cancer (other than non-melanoma skin cancer)?

0 = No
1 = Yes

23


Are any of your current activities limited by your cancer (other than non-melanoma skin cancer)?

0 = No
1 = Yes

24


Please select your "primary" cancer diagnosis from the list below (usually where the cancer started)

1=Bone/muscle (e.g. Sarcomas)

2=Brain 3=Breast

4=Melanoma

5=Esophagus or Stomach 6=Gynecologic (e.g. Cervical, Ovarian, Uterine) 7=Head/Neck 8=Hodgkin's Lymphoma 9=Leukemia 10=Liver 11=Lung 12=Colon or Rectum

13 =Multiple Myeloma

14=Non-Hodgkin's Lymphoma

15=Non Melanoma Skin

16=Pancreas

17=Prostate

18=Urologic(e.g. Bladder, Kidney, Testis)

19=Unknown or Other

25


Have you had a recurrence of your cancer (i.e., has your cancer come back)?

0=No
1=Yes
2=Not Sure




26

Has your cancer spread to any lymph nodes?

0=No
1=Yes
2=Not Sure

27


Has your cancer spread to another part of your body (other than to any lymph nodes)?

0=No
1=Yes
2=Not Sure

28


Do you currently have any numbness, tingling, or pain in your hands or feet?

0=No
1=Yes

29


Have you ever been told by a doctor or a health professional that you have depression?

0 = No
1 = Yes

30

Are any of your current activities limited by your depression?

0 = No
1 = Yes

31


Have you received treatment from a mental health specialist (for example a psychiatrist, psychologist, social worker, or other therapist) for your depression?

0=No
1=Yes

32


To what extent does your depression interfere with your relationships with family or friends?

0=Not at all

1=A little bit

2=Somewhat

3= Quite a bit

4=Very much

33


To what extent does your depression interfere with maintaining your responsibilities at work or at home?

0=Not at all
1=A little bit
2=Somewhat
3= Quite a bit
4=Very much

34


Have you ever been told by a doctor or a health professional that you have anxiety?

0 = No
1 = Yes

35

Are any of your current activities limited by your anxiety?

0 = No
1 = Yes

36



Have you received treatment from a mental health specialist (for example a psychiatrist, psychologist, social worker, or other therapist) for your anxiety?

0=No
1=Yes

37


To what extent does your anxiety interfere with your relationships with family or friends?

0=Not at all
1=A little bit
2=Somewhat
3= Quite a bit
4=Very much

38


To what extent does your anxiety interfere with maintaining your responsibilities at work or at home?

0=Not at all
1=A little bit
2=Somewhat
3= Quite a bit
4=Very much

39


Have you ever been told by a doctor or a health professional that you have an alcohol or drug problem?

0 = No
1 = Yes

40


Are any of your current activities limited by your alcohol or drug problem?

0 = No
1 = Yes

41



Have you received treatment from a mental health specialist (for example a psychiatrist, psychologist, social worker, or other therapist) for your alcohol or drug problem?

0=No

1=Yes

42


To what extent does your alcohol or drug problem interfere with your relationships with family and friends?

0=Not at all
1=A little bit
2=Somewhat
3= Quite a bit
4=Very much

43


To what extent does your alcohol or drug problem interfere with maintaining your responsibilities at work or at home?

0=Not at all
1=A little bit
2=Somewhat
3= Quite a bit
4=Very much

44


Have you ever been told by a doctor or a health professional that you have a sleep disorder?

0 = No
1 = Yes

45


Are any of your current activities limited by your sleep disorder?

0 = No
1 = Yes

46


What type of sleep disorder was diagnosed? (Please mark all that apply)

1=Insomnia
2=Narcolepsy
3=Obstructive sleep apnea
4=Idiopathic hypersomnia
5=Restless Legs Syndrome
6=Sleep terrors
7=Periodic limb movement disorder
8=Sleepwalking
9=Delayed sleep phase syndrome
10=Nightmares 11=Advanced sleep phase syndrome
12=REM sleep behavior disorder
13=Shift work sleep disorder

47

Has your sleep disorder been treated?

0=No
1=Yes
2=Not Sure

48


What type of treatment did you receive? (Please mark all that apply)

1=Medication

2=CPAP, Bilevel pressure

3=Oral appliance

4=Behavioral

5=Over-the-counter or non-prescription treatment

6=Other

49

Did the treatment help you?

0=Not at all
1=A little bit
2=Somewhat
3= Quite a bit
4=Very much

50


Have you ever been told by a doctor or a health professional that you have HIV or AIDS?

0 = No
1 = Yes

51

Are any of your current activities limited by your HIV or AIDS?

0 = No
1 = Yes

52


Have you ever been told by a doctor or a health professional that you have a spinal cord injury?

0 = No
1 = Yes

53


Are any of your current activities limited by your spinal cord injury?

0 = No
1 = Yes

54

How long ago was your spinal cord injury?

1=Less than two years ago
2=Between two and five years ago
3=Between six and ten years ago
4=Between 11 and 20 years ago
5=More than 20 years ago

55

At what level is your spinal cord injury?

1=Lumbar
2=Thoracic
3=Cervical

56

Is your spinal cord injury complete or incomplete?

1=Complete
2=Incomplete

57


Have you ever been told by a doctor or a health professional that you have Multiple Sclerosis (MS)?

0 = No

1 = Yes

58


Are any of your current activities limited by your Multiple Sclerosis (MS)?

0 = No
1 = Yes

59

How long ago was your MS diagnosed?

1=Less than two years ago
2=Between two and five years ago
3=Between six and ten years ago
4=Between 11 and 20 years ago
5=More than 20 years ago

60



Compare your overall symptoms now with what you experienced one year ago. Is your MS better, worse or about the same?

1=Better
2=Worse
3=About the Same

61


Are you taking disease-modifying drugs for your MS such as Avonex, Betaseron, Copaxone or Rebif?

0=No
1=Yes

62


Have you ever been told by a doctor or a health professional that you had Parkinson's Disease?

0 = No
1 = Yes

63


Are any of your current activities limited by your Parkinson's Disease?

0 = No
1 = Yes

64

How long ago was your Parkinson's disease diagnosed?

1=Less than two years ago
2=Between two and five years ago
3=Between six and ten years ago
4=Between 11 and 20 years ago
5=More than 20 years ago

65



Compare your overall symptoms now with what you experienced one year ago. Is your Parkinson's disease better, worse or about the same?

1=Better
2=Worse
3=About the Same

66


Have you ever been told by a doctor or a health professional that you had epilepsy?

0 = No
1 = Yes

67

Are any of your current activities limited by your epilepsy?

0 = No

1 = Yes

68

How long ago was your epilepsy diagnosed?

1=Less than two years ago
2=Between two and five years ago
3=Between six and ten years ago
4=Between 11 and 20 years ago
5=More than 20 years ago

69



Compare your overall symptoms now with what you experienced one year ago. Is your epilepsy better, worse or about the same?

1=Better
2=Worse
3=About the Same

70



Have you ever been told by a doctor or a health professional that you had Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrig's disease?

0 = No
1 = Yes

71


Are any of your current activities limited by your Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrig's disease?

0 = No
1 = Yes

72

How long ago was your ALS diagnosed?

1=Less than 1 year ago
2=Between 1 -- 2 years ago
3=Between 3 -- 5 years ago
4=Between 6 -- 10 years ago
5=More than 10 years ago

73



Compare your overall symptoms now with what you experienced one year ago. Is your ALS better, worse or about the same?

1=Better
2=Worse
3=About the Same

74

Do you have children under 20?

0 = No
1 = Yes

75


Have you ever been told by a doctor or a health professional that your child had epilepsy?

0 = No
1 = Yes

76

Are any of your child's current activities limited by epilepsy?

0 = No
1 = Yes

77

How long ago was your child's epilepsy diagnosed?

1=Less than two years ago

2=Between two and five years ago

3=Between six and ten years ago

4=Between 11 and 20 years ago

5=More than 20 years ago

78



Compare your child's overall symptoms now with what he/she experienced one year ago. Is your child's epilepsy better, worse or about the same?

1=Better
2=Worse
3=About the Same

79


Have you ever been told by a doctor or a health professional that your child had muscular dystrophy?

0 = No
1 = Yes

80


Are any of your child's current activities limited by muscular dystrophy?

0 = No
1 = Yes

81


How long ago was your child's muscular dystrophy diagnosed?

1=Less than two years ago
2=Between two and five years ago
3=Between six and ten years ago
4=Between 11 and 20 years ago
5=More than 20 years ago

82



Compare your child's overall symptoms now with what he/she experienced one year ago. Is your child's muscular dystrophy better, worse or about the same?

1=Better
2=Worse
3=About the Same



Neuro-QOL Sociodemographic Form (PEDIATRIC VERSION


1


What is your telephone area code (where you currently live)


__________


2

How old are you?


__________


3

What is your gender?

1=Male
2=Female


4

Are you of Spanish/Hispanic/Latino origin?

0=No
1=Yes


5


What is your racial or ethnic background? (Please mark all that apply)

1=White
2=Black or African-American
3=American Indian/Alaska Native
4=Asian
5=Native Hawaiian/Other Pacific Islander

6

Are you attending school now (including home school)?


1=Yes

2=No


If yes, what grade are you in? __________

If no, what is the highest grade in school that you

completed?_________

7


What is your current occupational status? (Please mark all that apply)


1=Full-time employed
2=Part-time employed
3=Full-time student

4=Part-time student

5=none of above


8

What is your height?

______(feet) _______(inches)

9

What is your weight in pounds?

_____________

10


How many different times did you stay in any hospital overnight or longer during the past 12 months?




12


File Typeapplication/msword
File TitleNeuro-QOL Online Sociodemographic Form
Authorvictord
Last Modified ByCSMoy
File Modified2007-12-20
File Created2007-12-20

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