Form 1 Survey

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?

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